Dear Mr. Sparks,
My husband and I had been married almost six years when we decided to
start a family. We were absolutely thrilled when we found out we were
expecting. I will never forget our very first ultrasound. My husband
held my hand as he stood next to me (I later thought it might have been a
better idea for him to be sitting when his knees began to give way!)
and we saw our little “peanut” for the first time. It was truly magical!
We found out we were expecting a boy during our second ultrasound. It
wasn’t until the third that we received the diagnosis—congenital
diaphragmatic hernia. Our first indication something was wrong came when
the technician became quiet. We grew increasingly concerned as the
silence continued. She finally said she was trying to get a certain view
of his heart, but nothing more. Our OB was in an emergency surgery that
day so we were going to see an MA instead. The second indication
something was wrong came when the technician said she was going to get
one of the doctors to see us. We were taken into another room where the
doctor sat down with us and said they believed our son had a
diaphragmatic hernia. They were already calling a local perinatologist
to schedule an ultrasound to confirm. After the confirmation, we learned
a great deal about CDH and what was required: delivering at a hospital
with a level III NICU, ECMO team, and pediatric surgeon. It was
recommended that we do an amniocentesis to check for additional
abnormalities. Being first-time-expectant parents and so very naïve to
CDH at the time, we would have jumped off a cliff if that had been
recommended. One decision we never had to consider was terminating the
pregnancy—that was never an option for us. A bit of relief came with the
amnio results—our son had no additional abnormalities. All future
ultrasounds, which there were a lot of, would be done with the
perinatologist so he could closely monitor our son.
I began having contractions early in my pregnancy and had to be
monitored more closely. It may not have been for the best reason, but we
loved the non-stress tests as we could hear the strength of our son’s
heart. I was put on bed rest for a couple of weeks in hopes that I would
make it to 34 weeks gestation. Much to the surprise of our doctor, 34
weeks came and went. We decided to schedule an induction at 39 weeks to
ensure our OB and the NICU team would be prepared for the arrival of our
son.
Rylan Matthew Salazar was born April 30, 2012 at 1:35 a.m. There were a
few things we knew to expect after birth. We knew not to expect to hear
him cry. We knew the NICU team would begin working on him right away.
What I never expected was to hold my son. I know it was only for a brief
moment, but I am eternally grateful for that moment and will never
forget the NNP who handed my son to me. Shortly after that amazing
moment, Rylan was whisked away to the NICU, my husband following closely
behind. I do not remember how long he was gone, but it was long enough
for him to watch the NICU team struggle to stabilize his firstborn
child. He stood back and watched the rapidly growing number of lines and
pumps and machines being inserted and connected to Rylan. It wasn’t
until one of the doctors realized he had been quietly observing the
organized chaos that he walked my husband back to our room. The next few
days (and weeks and months) seemed to blur together.
Rylan was put on ECMO his second day of life and taken off one week
later, his due date. His hernia was repaired two days later. He was
given blood thinners after a blood clot was unintentionally discovered
in his inferior vena cava and left iliac. On June 1, Rylan was extubated
and I was able to hold him for the first time since he was born. Not
surprisingly, I held him for as long as I was allowed. My husband held
him for the very first time on June 2, 8 days before his birthday. On
June 26, Rylan underwent surgery for a g-tube, Nissen fundoplication,
and to have his stomach (which was midline) tacked to the left side of
his abdomen. He began physical therapy on June 12. We were moved to the
Graduate NICU on July 4—it truly was Independence Day!! On July 11, in
preparation for taking Rylan home, I began to practice giving him the
shots he needed for his blood clot (fortunately, we did not have to
continue the shots at home). July 17 was the first time we brought our
sweet little cherub home. We have since been admitted three times for a
bowel resection, the flu, to have a second repair to his diaphragm, and
to have his Nissen redone. We will soon be back in the hospital for what
we hope to be his last surgery. His eye muscles did not develop
correctly and need to be adjusted so that his vision does not become
impaired in the future.
From the beginning of our journey, we were told it would take weeks or
months for Rylan to overcome each individual hurdle. He beat every
expectation and came home in less than half the time they anticipated it
would take. One of our doctors nicknamed him “Rhino” within his first
week of life. He couldn’t have a better nickname! He is such a strong
little boy. Rylan requires different medications as he has severe
reflux, struggles with feeding, and has chronic lung disease. Even with
everything he has been through, he is such a happy little boy. He truly
is our world and we are so blessed by him every day.
As parents of a child with CDH, we have different milestones, firsts,
and exciting moments. When Rylan was in the NICU, we were thrilled to
participate in his cares—taking his temperature, switching the location
of his pulse ox, wiping his eyes with saline, swabbing his mouth with
nystatin, and changing his diaper (depending on the comfort of the
nurse). We were excited to take home the first blood pressure cuff he
grew out of. We celebrated when he was finally home more days than he
had been in the hospital. We have cried out of pure joy more times than
we can count: the day Rylan finally tolerated being on a conventional
ventilator; when he was extubated; each time a chest tube, IV, pump,
etc. was removed; the first time we heard him cry, sneeze, hiccup,
squeak, or make any noise from his mouth other than the noise his ET
tube made when it had a leak; when he began to pee on his own without
lasix; when he was moved into a “big boy” crib; the first time we were
able to feed him mommy’s milk (with a 1 ml syringe); when he was well
enough to move to the Graduate NICU; when we were given a date for
discharge; when we found out we would not have to give him shots at home
for his clot; the first time our son became “cordless” and we were able
carry him around the unit; when we brought him home for the first time;
the first time he drank from a bottle; and the first time he tried
pureed food. Our most recent milestones: on February 27, he sat by
himself for the first time and on February 28, his echocardiogram showed
no signs of pulmonary hypertension and he no longer needs oxygen during
the day!
When we first met with a neonatologist and were given a tour of the
NICU, he introduced us to the family of another Cherub. Their daughter
had her repair the day before and was doing very well! We are so
grateful for the love and prayers we received from them and their family
and friends. As we left the hospital that day, the first thing we heard
on the radio was a story about a baby boy who survived CDH. Even
through all the uncertainty and helplessness we had been feeling, that
day was a day filled with hope for the future, hope for the survival of
our son. CDH can be exhausting and terrifying. We wish to bring other
families hope with Rylan’s story and will continue to keep all touched
by CDH in our thoughts and prayers!
Written by Rylan's parents, Martin and Andrea Salazar (Colorado)
A crazy quest to raise awareness for the 1000's of children fighting Congenital Diaphragmatic Hernia.
Friday, July 31, 2015
Thursday, July 30, 2015
July 30 - Dear Nicholas Sparks (Guest Blogger Maricella Rodriguez)
Dear Mr. Sparks,
When we found out we were expecting, we were both elated and afraid. We had lost a baby 4 months earlier at 12 weeks into the pregnancy. However this pregnancy was very different; everything was picture perfect. It was a textbook pregnancy. I had been taking prenatal vitamins before conception. I stopped eating fast food, caffeine, and junk food. The doctors assured us that all was well with the baby. At 20 weeks we had a scare. A routine ultrasound showed that the baby was at risk of having Down syndrome. We were thrilled when the amnio came back normal. The doctors decided that the baby was healthy and further ultrasounds were not needed. I felt uneasy, that something was not right. I asked for another u/s, but my OB said that it was not medically necessary. I prayed that I was wrong. I didn’t take any of the baby shower gifts out of their boxes. These feelings I had I kept to myself.
At 35 weeks, I was induced due to decelerations in his heartbeat. I cried tears of joy when I saw my little baby boy. He looked exactly like his big brother. They let me hold him for one second and then grabbed him from me when his eyes rolled back. Our baby was unable to breath at birth. He was rushed to the NICU.
An X-ray revealed that Chris was born with a diaphragmatic hernia. This means there was a hole in his diaphragm, which allowed his abdominal organs to move into his chest. Our world collapsed when the doctors explained the severity of our baby's condition. As a result of this, his right lung was underdeveloped, and his left one was practically non-existent. His heart was displaced over to the right side of his chest.
Chris had surgery when he was 2 days old to repair his diaphragm and bring all of his abdominal organs back in their place. I suffered spinal leakage during a routine epidural and could not get out of my hospital bed. It was a few days before I could see my baby. I will never forget that feeling-- thinking that my baby was going to die, and I wasn’t able to be with him.
The day I had blood inserted into my spine to repair the damage, I went immediately to see Chris. Nothing could prepare me for that. He had tubes coming out of everywhere. He had a chest tube, a stomach tube, he was on a ventilator, and he had a central line. A central line is a catheter inserted into a main vein near his heart.
Chris recovered nicely from his surgery and was off oxygen in 4 weeks and ready to come home. We were thrilled and ready to move on with our lives. However, Chris developed severe reflux. He would throw up more than half his formula during each feeding. He was not gaining any weight. He developed a severe cough due to the formula entering his lungs, an aspirated pneumonia. We took him for an X-ray that revealed a partial right lung collapse, and back into the NICU he went.
Christopher associated eating with pain, and he started eating less and less. At this time he was 6 weeks old and had not gained a single pound since birth. He was diagnosed as “failure to thrive.”
Three days after he was readmitted, his abdomen swelled up, and he became very ill. An X-ray revealed he had necrotizing endocolotis. This is death of the small and large intestine. Once again our baby was critically ill. That night when we went to see him, the doctor was waiting for us along with a social worker.
Once again my baby had tubes coming out of everywhere. He had a stomach tube coming out of his nose, draining blood from his stomach. He also had bloody stools. I had to consent to an emergency blood transfusion. Another central line had to be inserted. Chris was put on 3 antibiotics, and he did not receive any food for 12 days, in order to rest his intestines. Chris never ate again. When he was 8 weeks old he had surgery to install a gastrostomy tube.
At this time a geneticist examined Christopher and determined that he has a genetic condition. He has performed a blood test for chromosome analysis that has come back normal. Chris had a muscle biopsy that came back normal. However, the geneticist is positive that Chris has a genetic condition. Further testing is presently pending. As of now, Chris is considered to have an unknown syndrome.
After an additional 6 weeks in the NICU, Chris came home on March 1, 2002. His reflux is still an issue. He is on a feeding pump and medication to control his reflux. He still has problems gaining weight and refuses to take anything orally. He is now 4 months old. He is finally starting to fit into a size 0-3 months. He just started wearing a size one diaper. We are so thankful and happy to have him in our lives. He is living proof of one of God’s miracles. Many people near and far prayed for Chris. We are very thankful for that. Yes, we still have a long road ahead of us. But each morning when I wake up, Chris greets me with one of his big toothless smiles, and I know that everything is going to be ok.
Written by Christopher's mom, Maricella Rodriguez (2002, New York)
When we found out we were expecting, we were both elated and afraid. We had lost a baby 4 months earlier at 12 weeks into the pregnancy. However this pregnancy was very different; everything was picture perfect. It was a textbook pregnancy. I had been taking prenatal vitamins before conception. I stopped eating fast food, caffeine, and junk food. The doctors assured us that all was well with the baby. At 20 weeks we had a scare. A routine ultrasound showed that the baby was at risk of having Down syndrome. We were thrilled when the amnio came back normal. The doctors decided that the baby was healthy and further ultrasounds were not needed. I felt uneasy, that something was not right. I asked for another u/s, but my OB said that it was not medically necessary. I prayed that I was wrong. I didn’t take any of the baby shower gifts out of their boxes. These feelings I had I kept to myself.
At 35 weeks, I was induced due to decelerations in his heartbeat. I cried tears of joy when I saw my little baby boy. He looked exactly like his big brother. They let me hold him for one second and then grabbed him from me when his eyes rolled back. Our baby was unable to breath at birth. He was rushed to the NICU.
An X-ray revealed that Chris was born with a diaphragmatic hernia. This means there was a hole in his diaphragm, which allowed his abdominal organs to move into his chest. Our world collapsed when the doctors explained the severity of our baby's condition. As a result of this, his right lung was underdeveloped, and his left one was practically non-existent. His heart was displaced over to the right side of his chest.
Chris had surgery when he was 2 days old to repair his diaphragm and bring all of his abdominal organs back in their place. I suffered spinal leakage during a routine epidural and could not get out of my hospital bed. It was a few days before I could see my baby. I will never forget that feeling-- thinking that my baby was going to die, and I wasn’t able to be with him.
The day I had blood inserted into my spine to repair the damage, I went immediately to see Chris. Nothing could prepare me for that. He had tubes coming out of everywhere. He had a chest tube, a stomach tube, he was on a ventilator, and he had a central line. A central line is a catheter inserted into a main vein near his heart.
Chris recovered nicely from his surgery and was off oxygen in 4 weeks and ready to come home. We were thrilled and ready to move on with our lives. However, Chris developed severe reflux. He would throw up more than half his formula during each feeding. He was not gaining any weight. He developed a severe cough due to the formula entering his lungs, an aspirated pneumonia. We took him for an X-ray that revealed a partial right lung collapse, and back into the NICU he went.
Christopher associated eating with pain, and he started eating less and less. At this time he was 6 weeks old and had not gained a single pound since birth. He was diagnosed as “failure to thrive.”
Three days after he was readmitted, his abdomen swelled up, and he became very ill. An X-ray revealed he had necrotizing endocolotis. This is death of the small and large intestine. Once again our baby was critically ill. That night when we went to see him, the doctor was waiting for us along with a social worker.
Once again my baby had tubes coming out of everywhere. He had a stomach tube coming out of his nose, draining blood from his stomach. He also had bloody stools. I had to consent to an emergency blood transfusion. Another central line had to be inserted. Chris was put on 3 antibiotics, and he did not receive any food for 12 days, in order to rest his intestines. Chris never ate again. When he was 8 weeks old he had surgery to install a gastrostomy tube.
At this time a geneticist examined Christopher and determined that he has a genetic condition. He has performed a blood test for chromosome analysis that has come back normal. Chris had a muscle biopsy that came back normal. However, the geneticist is positive that Chris has a genetic condition. Further testing is presently pending. As of now, Chris is considered to have an unknown syndrome.
After an additional 6 weeks in the NICU, Chris came home on March 1, 2002. His reflux is still an issue. He is on a feeding pump and medication to control his reflux. He still has problems gaining weight and refuses to take anything orally. He is now 4 months old. He is finally starting to fit into a size 0-3 months. He just started wearing a size one diaper. We are so thankful and happy to have him in our lives. He is living proof of one of God’s miracles. Many people near and far prayed for Chris. We are very thankful for that. Yes, we still have a long road ahead of us. But each morning when I wake up, Chris greets me with one of his big toothless smiles, and I know that everything is going to be ok.
Written by Christopher's mom, Maricella Rodriguez (2002, New York)
Wednesday, July 29, 2015
July 29 - Dear Nicholas Sparks (Guest Blogger Sandra Kennell)
Dear Mr. Sparks,
My story starts in July 1997, it was my 20 week scan & I was told the baby wasn't in the right position to see the chest wall & could I come back the next week. The following week I was told my son had a severe diaphragmatic hernia to the left side & was very unlikely to survive so it would be best if I terminate my pregnancy! Well as you could imagine I was devastated, I refused to terminate & was referred to a hospital with better equipment, I developed polyhydramnios & was kept in hospital for 7 weeks before my son was delivered by c/section which was on the November 20, 1997. He weighed 10 lbs, 10 oz & we called him Cameron Anthony after his dad. The doctors made it clear there wasn't much hope as it was a bad hernia. He held on for 18 hours but then lost the fight on the November 21, 97. I still don't regret not having the termination, otherwise I would never have seen my son's big chubby face. Eleven months later, I had another son who was stillborn. This time through a totally different reason. You wouldn't believe my terror at being told I'd lost another child. They are now together at the crematorium & I visit almost every week. I went on to have a healthy boy & girl to go with my 9 year old son but it doesn't get any easier & I'll never forget.
Sincerely,
Cameron's mom, Sandra Kennell (Great Britain)
My story starts in July 1997, it was my 20 week scan & I was told the baby wasn't in the right position to see the chest wall & could I come back the next week. The following week I was told my son had a severe diaphragmatic hernia to the left side & was very unlikely to survive so it would be best if I terminate my pregnancy! Well as you could imagine I was devastated, I refused to terminate & was referred to a hospital with better equipment, I developed polyhydramnios & was kept in hospital for 7 weeks before my son was delivered by c/section which was on the November 20, 1997. He weighed 10 lbs, 10 oz & we called him Cameron Anthony after his dad. The doctors made it clear there wasn't much hope as it was a bad hernia. He held on for 18 hours but then lost the fight on the November 21, 97. I still don't regret not having the termination, otherwise I would never have seen my son's big chubby face. Eleven months later, I had another son who was stillborn. This time through a totally different reason. You wouldn't believe my terror at being told I'd lost another child. They are now together at the crematorium & I visit almost every week. I went on to have a healthy boy & girl to go with my 9 year old son but it doesn't get any easier & I'll never forget.
Sincerely,
Cameron's mom, Sandra Kennell (Great Britain)
Tuesday, July 28, 2015
July 28 - Dear Nicholas Sparks (Guest Blogger Lori Crisorio-Rivera)
Dear Mr. Sparks,
I was about 28 weeks pregnant with my son Dylan when he was diagnosed with CDH. I was absolutely devastated. He is my first child and my baby shower was 2 weeks away. What was I to tell everyone? Dr. Geis was very informative and compassionate but he warned us that ECMO is a possibility.
Dylan's left-sided hernia was very large. His stomach and intestines were in his chest cavity, pushing his heart over to the right. I had to have many non-stress tests, fluid checks, and level 2 ultrasounds. I started praying everyday, sometimes for 2-3 hours a day and saying the rosary was part of my everyday routine along with novenas to St. Gerard (Patron Saint of Pregnant Mothers) and St. Jude (Patron Saint of Lost Causes). I promised St. Jude my son's middle name would be Jude in honor of this wonderful saint. I also started to attend church every day, realizing the sacred importance of the Eucharist. God helped me get through this very stressful time in my life for I was only 21 and never had to experience anything this traumatic.
My OB-GYN planned a vaginal delivery at 39 weeks by induction. While I was being induced my son's heart rate started to drop, so they had to perform an urgent C-Section. The doctors told me that the first couple of minutes after the birth were critical for Dylan. He was finally born at 5:04pm weighing 7lbs 15ozs. Immediately after he was born the team of neonatalogists whisked him away. My husband and I never got see him until the next day. Dylan was stable that night. In the morning Dr Robinson performed the hernia repair. The doctor informed me that this hernia was worse than they had suspected. The doctor had to patch Dylan's diaphragm with gortex. Even though the surgery was a success my son's lungs were too small to sustain him. Ventilators couldn't do the job so they had to bag him manually. It was then that they told me he had to go on ECMO but he had to be flown by plane to Buffalo Children's Hospital. Because I had a C-Section I wasn't allowed to immediately. I was heartbroken. My husband and mother went the next day to Buffalo to be with him. A few days later, terrified of seeing him on ECMO, I flew to Buffalo. My husband, my mother, and I couldn't stop crying. He looked like a sleeping angel on that machine. I wanted to be with him every second. His first run on ECMO (about 4 days) went ok. They took him off as soon as they could to avoid complication, but after they took him off his health quickly started to deteriorate. He dropped below his birth weight. They tried nitric oxide and an oscillator, but nothing worked. Meanwhile, my husband, my mother, and I stayed at the Ronald McDonald House for the duration in Buffalo.
The doctors had to rush Dylan back on ECMO a second time but they informed me that he could never go on it again. While Dylan was on his second ECMO run (about 9 days), he started to develop pulmonary hypertension, blood clots to his UA/UV line, he had to have several blood transfusions, and he had to be on lasix constantly for fluid retention. Then he developed pneumonia and both of his lungs collapsed. Worst of all Dylan developed seizures due to a cranial hemorrhage caused by the large amounts of heparin administered. We were told that Dylan had to come off ECMO because if the head bleed got any worse he would become a vegetable. They megadosed him with antibiotics hoping to kill the pneumonia so he could breathe with a ventilator when he came off. But Dylan developed a yeast infection in his blood due to all the antibiotics. I prayed to Saint Jude and begged God to let him live. Thank God he came off ECMO successfully. Dylan immediately started to experience withdrawal from all the morphine he was given for ECMO.
Dylan had to get a cat-scan to see the extent of brain damage from the result of being on ECMO. The cat-scan revealed that the bleed was severe on the left-side and moderate on the right side of his brain. We were then introduced to a developmental doctor who told us Dylan would probably have Cerebral Palsy, be blind, and deaf. My husband and I thought the nightmare would never end. We felt like running away. Our son fought so hard to get this for we knew we couldn't give up. We just loved him so much. None the less, he started to do well enough to be flown back to Albany Medical Center. Dylan also had gastric reflux and oral trauma due to the invasiveness of the ventilator so he had to be fed through a NG-tube. At two months Dylan was off of the oxygen but it was a long hard battle to get him to drink from a bottle. He wouldn't drink much so his formula had to be thickened to 36 calories and he had to have MCT oil added to help him gain weight. They weaned him off of the Phenobarbital for the seizures and he seemed to do OK. Finally, at 3 months old Dylan was able to come home. We were so happy. When he turned 6 months old, after his DTP shot, Dylan started to have uncontrollable seizures. Once again my husband and I were in another nightmare. For 9 months Dylan was given many different medications but none of them could control the seizures.
Two weeks before the Christmas of ’96, Dylan refused to eat due to the medication. It was making him so sick. Dylan was back in the hospital. And we were told he might have to have brain surgery to stop the seizures. I was very depressed and started to have anxiety attacks. I just cried all the time. But I didn't stop praying. Miraculously the doctor found the right combination of medicine (Phenobarbital and Lamictal) and his seizures were completely controlled. He got to come home for Christmas. We were thrilled. Two months later Dylan had a Mic-Key feeding tube put in and started to do much better.
Well, the summer of '97 I was pregnant again. I had to have a level 2 ultrasound at 16 weeks to rule out CDH but they said it was too early. I went back at 20 weeks and the doctors noticed the baby was very small for gestation (the 5th percentile). The doctors thought that either it was a genetic abnormality or my placenta wasn't giving the baby enough nutrition. They said if the baby stopped growing they'd have to deliver the baby early. We were devastated again. Thank God this baby didn't have CDH. I started praying the rosary every day and vowed to have this baby's middle name be Mary after the Blessed Mother. I had to have continuous level 2 ultrasounds to monitor the baby's growth and weight gain. Well I am happy to say that on April 29, 1998 I gave birth to a beautiful healthy baby girl named Kayleigh Mary Crisorio-Rivera. I swear it was due to the Rosary.
I am also happy to report that Dylan proved many doctors wrong. He can see, hear, and he is almost walking. He has developmental delays but probably always will. Dylan will start school this September at the Center for the Disabled. Dylan is such a beautiful and loveable child. He loves to be cuddled and sung to. He adores his grandparents. We are truly blessed to have these two children. Dylan is an angel sent by God.
Sincerely,
Dylan's mom, Lori Crisorio-Rivera (New York)
I was about 28 weeks pregnant with my son Dylan when he was diagnosed with CDH. I was absolutely devastated. He is my first child and my baby shower was 2 weeks away. What was I to tell everyone? Dr. Geis was very informative and compassionate but he warned us that ECMO is a possibility.
Dylan's left-sided hernia was very large. His stomach and intestines were in his chest cavity, pushing his heart over to the right. I had to have many non-stress tests, fluid checks, and level 2 ultrasounds. I started praying everyday, sometimes for 2-3 hours a day and saying the rosary was part of my everyday routine along with novenas to St. Gerard (Patron Saint of Pregnant Mothers) and St. Jude (Patron Saint of Lost Causes). I promised St. Jude my son's middle name would be Jude in honor of this wonderful saint. I also started to attend church every day, realizing the sacred importance of the Eucharist. God helped me get through this very stressful time in my life for I was only 21 and never had to experience anything this traumatic.
My OB-GYN planned a vaginal delivery at 39 weeks by induction. While I was being induced my son's heart rate started to drop, so they had to perform an urgent C-Section. The doctors told me that the first couple of minutes after the birth were critical for Dylan. He was finally born at 5:04pm weighing 7lbs 15ozs. Immediately after he was born the team of neonatalogists whisked him away. My husband and I never got see him until the next day. Dylan was stable that night. In the morning Dr Robinson performed the hernia repair. The doctor informed me that this hernia was worse than they had suspected. The doctor had to patch Dylan's diaphragm with gortex. Even though the surgery was a success my son's lungs were too small to sustain him. Ventilators couldn't do the job so they had to bag him manually. It was then that they told me he had to go on ECMO but he had to be flown by plane to Buffalo Children's Hospital. Because I had a C-Section I wasn't allowed to immediately. I was heartbroken. My husband and mother went the next day to Buffalo to be with him. A few days later, terrified of seeing him on ECMO, I flew to Buffalo. My husband, my mother, and I couldn't stop crying. He looked like a sleeping angel on that machine. I wanted to be with him every second. His first run on ECMO (about 4 days) went ok. They took him off as soon as they could to avoid complication, but after they took him off his health quickly started to deteriorate. He dropped below his birth weight. They tried nitric oxide and an oscillator, but nothing worked. Meanwhile, my husband, my mother, and I stayed at the Ronald McDonald House for the duration in Buffalo.
The doctors had to rush Dylan back on ECMO a second time but they informed me that he could never go on it again. While Dylan was on his second ECMO run (about 9 days), he started to develop pulmonary hypertension, blood clots to his UA/UV line, he had to have several blood transfusions, and he had to be on lasix constantly for fluid retention. Then he developed pneumonia and both of his lungs collapsed. Worst of all Dylan developed seizures due to a cranial hemorrhage caused by the large amounts of heparin administered. We were told that Dylan had to come off ECMO because if the head bleed got any worse he would become a vegetable. They megadosed him with antibiotics hoping to kill the pneumonia so he could breathe with a ventilator when he came off. But Dylan developed a yeast infection in his blood due to all the antibiotics. I prayed to Saint Jude and begged God to let him live. Thank God he came off ECMO successfully. Dylan immediately started to experience withdrawal from all the morphine he was given for ECMO.
Dylan had to get a cat-scan to see the extent of brain damage from the result of being on ECMO. The cat-scan revealed that the bleed was severe on the left-side and moderate on the right side of his brain. We were then introduced to a developmental doctor who told us Dylan would probably have Cerebral Palsy, be blind, and deaf. My husband and I thought the nightmare would never end. We felt like running away. Our son fought so hard to get this for we knew we couldn't give up. We just loved him so much. None the less, he started to do well enough to be flown back to Albany Medical Center. Dylan also had gastric reflux and oral trauma due to the invasiveness of the ventilator so he had to be fed through a NG-tube. At two months Dylan was off of the oxygen but it was a long hard battle to get him to drink from a bottle. He wouldn't drink much so his formula had to be thickened to 36 calories and he had to have MCT oil added to help him gain weight. They weaned him off of the Phenobarbital for the seizures and he seemed to do OK. Finally, at 3 months old Dylan was able to come home. We were so happy. When he turned 6 months old, after his DTP shot, Dylan started to have uncontrollable seizures. Once again my husband and I were in another nightmare. For 9 months Dylan was given many different medications but none of them could control the seizures.
Two weeks before the Christmas of ’96, Dylan refused to eat due to the medication. It was making him so sick. Dylan was back in the hospital. And we were told he might have to have brain surgery to stop the seizures. I was very depressed and started to have anxiety attacks. I just cried all the time. But I didn't stop praying. Miraculously the doctor found the right combination of medicine (Phenobarbital and Lamictal) and his seizures were completely controlled. He got to come home for Christmas. We were thrilled. Two months later Dylan had a Mic-Key feeding tube put in and started to do much better.
Well, the summer of '97 I was pregnant again. I had to have a level 2 ultrasound at 16 weeks to rule out CDH but they said it was too early. I went back at 20 weeks and the doctors noticed the baby was very small for gestation (the 5th percentile). The doctors thought that either it was a genetic abnormality or my placenta wasn't giving the baby enough nutrition. They said if the baby stopped growing they'd have to deliver the baby early. We were devastated again. Thank God this baby didn't have CDH. I started praying the rosary every day and vowed to have this baby's middle name be Mary after the Blessed Mother. I had to have continuous level 2 ultrasounds to monitor the baby's growth and weight gain. Well I am happy to say that on April 29, 1998 I gave birth to a beautiful healthy baby girl named Kayleigh Mary Crisorio-Rivera. I swear it was due to the Rosary.
I am also happy to report that Dylan proved many doctors wrong. He can see, hear, and he is almost walking. He has developmental delays but probably always will. Dylan will start school this September at the Center for the Disabled. Dylan is such a beautiful and loveable child. He loves to be cuddled and sung to. He adores his grandparents. We are truly blessed to have these two children. Dylan is an angel sent by God.
Sincerely,
Dylan's mom, Lori Crisorio-Rivera (New York)
Monday, July 27, 2015
July 27 - Dear Nicholas Sparks (Guest Blogger Teresa Kelly)
Dear Mr. Sparks,
I'm not quite sure where to begin. It's now been a little over 3 months since we lost our son to CDH. It's taken me a while to come to some sort of terms with our loss in order to be ready to tell our story. I feel that it's important to tell our story not only to help us heal and to remember our beautiful baby boy but, also to help anyone out there who might be going through what we went through. I know that after our son was diagnosed with CDH, I spent hours daily on this site and it really helped me!
I was 23 weeks pregnant when I went in for my 2nd trimester sonogram. As the technician did the sonogram, I knew something was WRONG! She evaded my questions and was very reluctant to give me a picture of the baby. The worst part was that I had taken our 6-year-old daughter with me. She was so excited about finally having a brother or sister. We were hoping to find out the sex of the baby. That, too, was not told to us. I was simply told that my doctor would be contacting me to go over the results. I had the sonogram on a Friday afternoon so, needless to say my doctor had already gone home and wasn't able to tell me anything that day. I went home and worried the whole weekend-knowing in the back of my mind something was wrong. On Monday morning, I called my doctor during my break from work and my worst fears were realized. She informed me that the sonogram showed a great deal of fluid in the baby's abdomen. I asked what this meant and she said she wasn't sure but, would like me to go for a more intense sonogram. I called immediately and tried to schedule an appointment-they tried to tell me that I was going to have to wait for nearly a week-I told them there was NO WAY that I was going to wait a week after hearing this news-so they finally scheduled me the following day. That night I went home and searched all over the internet for these symptoms to see what it could possibly be but, found nothing. I backtracked through my pregnancy a million times to find things that went wrong. In my first trimester, I spotted a couple of times but, it was dismissed by my doctor as nothing major. The pregnancy appeared fine. The second trimester I gained weight very rapidly despite eating right and exercising-I gained very little weight with my daughter. My doctor insisted that I was merely eating too much even though I told her I was NOT.
The next day came and my husband and I went together. We were taken into a room and within minutes the technician had the doctor in the room. He showed us all of the fluid and explained that our baby had CDH and it was very serious. He said another doctor was going to talk with us and explain what this meant and what our options were. We were taken to another room where we sat a while and cried until the doctor came in she explained that our son had CDH and it was very serious. He had liver in his chest area and he was under cardiac arrest from his liver pushing on his heart. She said that I had polyhydramnios with very large amounts of amniotic fluid. She felt that the fluid was going to put me into an early labor and the baby would die at birth or else the baby was going to die in the womb. She did also say that there were some doctors in San Francisco doing experimental surgery and some doctors at Children's Hospital that could tell me more about CDH and the chances for our baby. She felt they were slim to none. We were offered a late termination that would have to be done in the next 3 days-as I was in the last week possible. I don't know how I remember any of what she told us because I was in such a state of shock! We left there having decided we could not take the chance with my life and we did not feel we had the strength to bear watching our son die-we were going to L.A. to terminate.
The next 3 days were grueling. I cried continuously, threw up constantly, and prayed God would take my son naturally and not force me to make this decision. I took it upon myself to go to Children's hospital and find a doctor who dealt with babies with CDH. She was such an amazing person. Without ever knowing me-she left what she was doing and talked for nearly an hour to me-she told me of all of the wonderful things that they can do to help these babies-but, she also told me that my case seemed to be very severe-she even cried with me. She even went as far as to give me her home and office number to talk further if I wished. She truly was an angel of mercy. The day came, we went to L.A. with my sister at our side. We went into the clinic and I broke down and lost complete control. There was no way I could abort a baby that I wanted so badly and had PLANNED to have. I loved my baby! We left and I thank God every single day of my life for walking me out of that clinic.
The remainder of the pregnancy was very difficult but, I would never reverse my decision to continue the pregnancy! We had so much love and support from our families, friends, and colleagues. My polyhydramnios got far worse! My care was taken over by specialists. The specialists gave us very little hope but, for the same token would not tell us that there was no hope either. They did nothing to help me with the horrible discomfort from the polyhydramnios-I had gained 60 pounds. The weight was coming on at about 8-10 pounds a week. My legs were so swollen that I could not bend my ankles or knees. I could not sleep-I cried it hurt so bad. I went into the triage dept. at the hospital a couple of times but, my doctor did nothing-saying that if she drained the fluid it would just prolong the pregnancy and inducing me was illegal. We were so frustrated! We decided that we wanted a second opinion! I knew my rights with the insurance company and insisted on a second opinion. It took a while but, we were finally scheduled for a second opinion in my 29th week.
It only took this wonderful doctor a matter of minutes to tell us that both my condition and the baby's had become very severe. He asked if he could be blunt and then told us that our son had no chance of surviving. He also told us that he was far too large to deliver naturally. His abdomen had become so swollen he was off of the charts and this was only my 29th week. He told us how severe my polyhydramnios was. We immediately signed our care over to him that day. He drained some of my fluid and scheduled me for a c-section 2 days later.
With our families at our side every step of the way, we went into the operating room-my husband holding my hand the entire time. The operation was difficult because of the size of our son. The staff was so understanding and compassionate. They delivered our son and pre-warned us about the severity of his appearance. The nurses held and cuddled him as they would any other baby. One nurse even asked if she could bless him. They showed us our son. We named him Joshua-meaning saved by God. Although he did not live-we feel that he is alive with God and is therefore, saved. After the surgery, a couple of wonderful nurses brought us our son to touch and hold him. We didn't think that we had the strength for this but, it turned out to be the one thing that I am most thankful for. It did not matter to me what Joshua looked like-he was so beautiful to us. He was our son and we loved him and will always love him! Although he never breathed-he had a slight heart beat for about an hour-it stopped right after they took him away from us. I think that he was holding on to meet us. The nurses made a memory box for us that is my most treasured possession. I look at Joshua's pictures daily and still cry often but, I know that he is with God and my mother in heaven and is in no more pain.
Written by Joshua's mom, Teresa Kelly (California)
I'm not quite sure where to begin. It's now been a little over 3 months since we lost our son to CDH. It's taken me a while to come to some sort of terms with our loss in order to be ready to tell our story. I feel that it's important to tell our story not only to help us heal and to remember our beautiful baby boy but, also to help anyone out there who might be going through what we went through. I know that after our son was diagnosed with CDH, I spent hours daily on this site and it really helped me!
I was 23 weeks pregnant when I went in for my 2nd trimester sonogram. As the technician did the sonogram, I knew something was WRONG! She evaded my questions and was very reluctant to give me a picture of the baby. The worst part was that I had taken our 6-year-old daughter with me. She was so excited about finally having a brother or sister. We were hoping to find out the sex of the baby. That, too, was not told to us. I was simply told that my doctor would be contacting me to go over the results. I had the sonogram on a Friday afternoon so, needless to say my doctor had already gone home and wasn't able to tell me anything that day. I went home and worried the whole weekend-knowing in the back of my mind something was wrong. On Monday morning, I called my doctor during my break from work and my worst fears were realized. She informed me that the sonogram showed a great deal of fluid in the baby's abdomen. I asked what this meant and she said she wasn't sure but, would like me to go for a more intense sonogram. I called immediately and tried to schedule an appointment-they tried to tell me that I was going to have to wait for nearly a week-I told them there was NO WAY that I was going to wait a week after hearing this news-so they finally scheduled me the following day. That night I went home and searched all over the internet for these symptoms to see what it could possibly be but, found nothing. I backtracked through my pregnancy a million times to find things that went wrong. In my first trimester, I spotted a couple of times but, it was dismissed by my doctor as nothing major. The pregnancy appeared fine. The second trimester I gained weight very rapidly despite eating right and exercising-I gained very little weight with my daughter. My doctor insisted that I was merely eating too much even though I told her I was NOT.
The next day came and my husband and I went together. We were taken into a room and within minutes the technician had the doctor in the room. He showed us all of the fluid and explained that our baby had CDH and it was very serious. He said another doctor was going to talk with us and explain what this meant and what our options were. We were taken to another room where we sat a while and cried until the doctor came in she explained that our son had CDH and it was very serious. He had liver in his chest area and he was under cardiac arrest from his liver pushing on his heart. She said that I had polyhydramnios with very large amounts of amniotic fluid. She felt that the fluid was going to put me into an early labor and the baby would die at birth or else the baby was going to die in the womb. She did also say that there were some doctors in San Francisco doing experimental surgery and some doctors at Children's Hospital that could tell me more about CDH and the chances for our baby. She felt they were slim to none. We were offered a late termination that would have to be done in the next 3 days-as I was in the last week possible. I don't know how I remember any of what she told us because I was in such a state of shock! We left there having decided we could not take the chance with my life and we did not feel we had the strength to bear watching our son die-we were going to L.A. to terminate.
The next 3 days were grueling. I cried continuously, threw up constantly, and prayed God would take my son naturally and not force me to make this decision. I took it upon myself to go to Children's hospital and find a doctor who dealt with babies with CDH. She was such an amazing person. Without ever knowing me-she left what she was doing and talked for nearly an hour to me-she told me of all of the wonderful things that they can do to help these babies-but, she also told me that my case seemed to be very severe-she even cried with me. She even went as far as to give me her home and office number to talk further if I wished. She truly was an angel of mercy. The day came, we went to L.A. with my sister at our side. We went into the clinic and I broke down and lost complete control. There was no way I could abort a baby that I wanted so badly and had PLANNED to have. I loved my baby! We left and I thank God every single day of my life for walking me out of that clinic.
The remainder of the pregnancy was very difficult but, I would never reverse my decision to continue the pregnancy! We had so much love and support from our families, friends, and colleagues. My polyhydramnios got far worse! My care was taken over by specialists. The specialists gave us very little hope but, for the same token would not tell us that there was no hope either. They did nothing to help me with the horrible discomfort from the polyhydramnios-I had gained 60 pounds. The weight was coming on at about 8-10 pounds a week. My legs were so swollen that I could not bend my ankles or knees. I could not sleep-I cried it hurt so bad. I went into the triage dept. at the hospital a couple of times but, my doctor did nothing-saying that if she drained the fluid it would just prolong the pregnancy and inducing me was illegal. We were so frustrated! We decided that we wanted a second opinion! I knew my rights with the insurance company and insisted on a second opinion. It took a while but, we were finally scheduled for a second opinion in my 29th week.
It only took this wonderful doctor a matter of minutes to tell us that both my condition and the baby's had become very severe. He asked if he could be blunt and then told us that our son had no chance of surviving. He also told us that he was far too large to deliver naturally. His abdomen had become so swollen he was off of the charts and this was only my 29th week. He told us how severe my polyhydramnios was. We immediately signed our care over to him that day. He drained some of my fluid and scheduled me for a c-section 2 days later.
With our families at our side every step of the way, we went into the operating room-my husband holding my hand the entire time. The operation was difficult because of the size of our son. The staff was so understanding and compassionate. They delivered our son and pre-warned us about the severity of his appearance. The nurses held and cuddled him as they would any other baby. One nurse even asked if she could bless him. They showed us our son. We named him Joshua-meaning saved by God. Although he did not live-we feel that he is alive with God and is therefore, saved. After the surgery, a couple of wonderful nurses brought us our son to touch and hold him. We didn't think that we had the strength for this but, it turned out to be the one thing that I am most thankful for. It did not matter to me what Joshua looked like-he was so beautiful to us. He was our son and we loved him and will always love him! Although he never breathed-he had a slight heart beat for about an hour-it stopped right after they took him away from us. I think that he was holding on to meet us. The nurses made a memory box for us that is my most treasured possession. I look at Joshua's pictures daily and still cry often but, I know that he is with God and my mother in heaven and is in no more pain.
Written by Joshua's mom, Teresa Kelly (California)
Sunday, July 26, 2015
July 26 - Dear Nicholas Sparks (Guest Blogger Janice Crawford)
Dear Mr. Sparks,
So let's begin with Ange's story. First I guess that it is important to know that I am a single mother of two very special children. My first child Shane was born October 6 1991, other than being a preemie and only weighing 4 pounds 4 ounces he was normal and was in the hospital 5 days.
For my 31st birthday in June of 1990 I was delighted and hurt at the same time. I had developed blood poisoning and went to the local hospital ER room to be treated and before they started the treatment they did a pregnancy test. Much to my surprise with a 9 year old son and now very single I learned that we should expect a new baby probably in January to start a new year. My first visit to the doctor at less than 6 weeks to confirm the pregnancy I had a ultrasound there wasn't even a baby at this point just a yolk sack but I was very much pregnant and a little scared. One child at this point I thought was enough and Shane (my son) wasn't sure if he wanted a new baby brother or sister. All of my doctor's visits were normal and things were going great. I was getting very excited about having a new baby.
One week before Thanksgiving I had a ultrasound done at my request to try and determine what the sex of the baby would be. On the day of the ultrasound my mother and son were present and we were very excited about finding out what the baby would be. My son was amazed at the "railroad tracks" (spine) and then as the baby started turning and moving he was even more the only downfall was it's a girl. As the test progressed the technician finally stopped and spit out a roll of pictures and left the room. Thinking the test was done I proceeded to get dressed only to be told a few minutes later that in the excitement of showing my son and mother the baby that she had gotten the test in the wrong order. So we tried again and she spit more pictures out and left the room again. Only this time when she returned she told me that I needed to have a seat and see the doctor I knew something was wrong. After 10 minutes of waiting I was taken to the doctors office to 4 or 5 books on his desk and hear that he didn't know how to start with what was wrong and had to do some digging before telling me that my daughter had a Diaphragmatic Hernia (like I new what that was). I was also told that I wouldn't be seen at this office anymore because they were not prepared to deal with a condition they knew nothing about. I was seen at The hospital the Monday after Thanksgiving and went through more ultrasounds and a amniocentesis at the end of a very long day with more tests than I can remember I was told that if the amniocentesis showed any other defects that they would refuse to do anything to save the baby. Her hernia was so severe that they didn't think she had any lung at all on her right side and her heart was pushed into her back. At this time she was given a 10% survival rate. For the next 2 ½ months I went to the hospital 3 times a week for stress test and more ultrasounds.
I guess I went through the normal stress and strain wondering if I had done something to cause this to happen to my baby. After 2 months of soul searching and finally believing the doctors I finally decided it wasn't my fault after all. Me and Shane (my son) decided that we needed to pick a name. After a lot of looking and listening, we heard a song and decided that it was our name so we finally had Angelia Danielle Crawford named after Richard Marx's "Angelia." I decided that if nothing else it would look nice on a head stone. At this point we were being told that her chances were now at 2%. Finally on January 23rd we were admitted into the hospital to have a c-section (my choice after already having one and not wanting to add stress) for the next morning. So on January 24, 1991, at 11:36am, Angelia was born. My mother got to see her first since I was under. I was awakened in the recovery room and tried to get up, only to be sedated again. I woke up in my room and found a picture taped to my bed. All the tubes and wires were hard to take. I went to see her about 3:00pm and was totally unprepared for the sight even though I had been in the NICU unit when I was about 8 ½ months along. She was huge compared to my first child and it was hard to believe she was as sick as they said. On the foot of her bed was a sign that read ANGEL. I asked her nurse, Amy Vining, (my angel) who had told them her name. She said no one, they just decided as she was brought into the unit that she looked like an angel. I wonder sometimes if that was their way of telling me that they didn't think she would make it. As I went in to see her for the first time, I noticed that her feet were laying the wrong way. She also had clubfeet. At The hospital, up till this point, the surgery was done as soon as possible after birth, but her doctor, Dr. Shorner, (as close to God as anyone on this earth in my eyes) decided to wait for 3 days to give her a chance to gain her strength. So for 3 days we hoped and prayed that she would make it till her scheduled surgery date and then we prayed she would make it through surgery. She did, and thank God we never had to put her on ECMO. She was vent dependent for 2 weeks. Since I had her at the hospital and a c-section, I was a patient for 7 days. After I was discharged, I stayed with a Aunt and some cousins until she was moved into a room on the 5th floor. I moved into her room on February 4th and our siege began. As soon as she was put in a room her feet were cast up to her thighs and she started refluxing. Of course her doctors residents really didn't think she was so when they checked her cast because her toes were turning blue, she promptly refluxed in his face. Case closed about reflux. When Angel was 5 weeks old, I went back to the clinic and was told that I had cervical cancer and had to make some choices. Freeze the cervix and have it checked out every 6 months or I could have everything taken out. My choice was not to deal, so I had it taken out. At 2 months Angel had her 1st nissen and no help, well maybe for one week, then back to reflux. Angel had never nursed or had a bottle. As soon as you get in front of her face she would start refluxing. Actually she had projectile reflux with this. We were told not to handle her as every time she was moved (and even when she wasn't), she would start refluxing. In April I came down with a massive infection and was readmitted. She came down with pneumonia in May of 91 and at the same time one of the other babies on the floor beside us died. Stevie's mom, Denise, and I had become very close and this was hard on all of us. The day Stevie was viewed at the funeral home Angel had a night where she threw up blood and we called the resident on call to come check her and he was to busy in the PICU unit taking care of sick kids so I had a fit and insisted that her surgeon be called since his resident was too busy .
Well he finally came and told me nothing was wrong but he would do a blood crit and, low and behold, she had to have a blood transfusion. Last time that resident was allowed in my room. We had another nissen within 2 weeks because she was still refluxing. At this time they also put in a feeding tube. Angel had a central line until this point and we were finally able to leave the room without dragging a pole with us. This was heaven. We had never been allowed to leave the hall in front of her room until this point. I noticed that Angel was looking really yellow and we did some blood work to find out that she had a very rare form of hepatitis J or K Something they didn't even know how to treat. Her billerium soared at this point and she turned an ugly shade of green. Some of the nurses thought that the central line and her hepatitis were the main culprit. I really wondered about the last blood transfusion at this point. By this time I had been at the hospital for 5 months and didn't know when we would be allowed to go home. This had taken its toll on everyone in my family. My son not only had a sister who was very sick but he had lost his mother for 5 months. I never left the hospital for more than 4 weekends at this time. I was so tired of the hospital, I couldn't stand it. I would call my family and cry because I just wanted to go home and I didn't feel anyone was telling me anything. As I became more depressed her surgeon (unknown to me) had requested that I be reserved a room at South because they thought I would be having a nervous breakdown. I didn't just learn that I could go over to the library and do all the research I wanted, I was pulling up case files and then going back and asking all kinds of questions. When the doctors found out what I was doing they had all the medlines restricted to medical personnel only but by then it was too late I really started pushing to go home on my birthday, which was June 25th.
By this time I was, and had been doing, all of Angel's care for at least 3 months. I was finally released on July 1st,, only because Angels liver was so bad that she was on top of the liver transplant list and her surgeon decided that I should be able to go home because within 3 or 4 weeks she would have to be readmitted to wait for a transplant. He wanted me to say that I had been able to take her home. After 2 days, one of the nurses who had been taking care of her came to visit and we went to the NC Zoo, which was about 10 miles from my home. We went and got everything so I could feed Angel, except her formula, and of course she got hungry. She cried for about 45 minutes until we got home and fed her. Then she started refluxing again. Patricia, her nurse from the hospital, cried as much as I did and told me to call the hospital because she would have to go back. I did call all I could get was a resident who didn't know what to do so I stayed home and just dealt with the reflux. There was nothing they could do I couldn't, so when they called back 2 days later to tell me to bring her back, I refused. After 3 weeks she went back for a checkup and her billerium had dropped just 1 point but it was enough for me and I refused to have her readmitted. Her second checkup in 2 weeks showed it had dropped another point so we came off the transplant list and did a lot of praying. She still had reflux after every feed so I discussed options and was told there was none. Angel refluxed a lot when she was 9 months old and turned blue so we were back in the hospital for 1 month. This time I had a pediatric resident who came to my room and begged me to bring her to him. At this point she didn't have a pediatrician because none in my hometown knew what her condition was so therefore they wouldn't see her as a patient. So I finally got a pediatrician even though he was over an hour away.
Dr. Steve Novack was a Godsend. He was willing to help me make adjustments with Angel's feeds and go through a lot of questions about what would be normal for her. At 10 months, Angel got chicken pox. For 3 days I didn't sleep- nothing but try to make her comfortable. Finally I called Steve and was told to bring her to the ER (for my sake not hers). When we got there, we were put in isolation in the ER and then a whole herd of residents came in to see her. When Steve finally got down to see her he admitted her (worse case he had ever seen). Once in an isolation room on the 5th floor they started her on Aclyvir, a miracle drug in my opinion (used for herpes outbreaks). That night I could tell it was helping. We finally went home after 5 days.
Angel was still refluxing seriously and so finally when she was 11 months and 2 weeks we were readmitted for a 3rd or 4th nissen. I can't keep count. My original surgeon, Dr. Shorner, had left the hospital and gone to Dartmouth (our loss their gain) and we had a new surgeon.
We did not get along at all. I knew that Angel had severe scaring and that this next surgery would be long one. He didn't agree and told me that there was nothing in her charts to say otherwise and this surgery would last about 4 hours so I finally said, whatever. Within 1 hour of surgery they came to tell me that he had cancelled all other surgeries for the day and it would be awhile (8 hours) when he was done. It was a different story- all the sudden I knew what I was talking about. We were there for 5 days and then discharged (he didn't believe in keeping patients for 5 days). Well a day before discharge Angel started having severe loose stools, which I knew wasn't good but I was wrong again in his opinion, so home we went. At this time before we left, standing in the hall talking to one of the nurses who was eating potato chips, Angel reached over and took one and put it in her mouth chewed and swallowed. A first for her; she had never put anything in her mouth, not toys, fingers, nothing. I was a little freaked because we were told coming out of surgery nothing by mouth for 4 weeks. Well for the next 5 days we were in the pediatricians office every other day for dehydration. Finally when I started getting very upset, Dr. Novack called the hospital and was informed that Angel had a stool sample done the day we were discharged and it came back the next day with rotovirus. None of the staff had bothered to call. So back we went for 3 weeks (with one very mad mom). When we finally got that worked out she had turned 1 year old so the next step was off formula and onto pediasure. Pediasure at this time was hard to get and it took me 2 weeks before the order came in at my home this was also on a Friday and so at 1:00pm when I finally got it in my hands I called Dr. Novack and asked how to switch. Just change it over at the next feed he said. So at 5:00 that day I did and as soon as I put it in the feeding tube she started screaming so I called the hospital. Dr. Novack was gone for the weekend and I ended up with a doctor from the NICU, who promptly told me that nothing was wrong. I was overreacting and Angel proceeded to code. So I gave him a few choice words and called a ambulance. When the first responder got there and took one look at her foley cath coming out of her stomach and all these scars he panicked and told me he didn't know what to do. I panicked and told him to ignore everything except that she was wasn't breathing and had no heartbeat, which he did. They took her downstairs and put her on the back of a pick up until the ambulance got there and off to a different Hospital we went. When we got there they panicked, which made me worse and wanted to air flight her back to the first hospital. For the next hour the hospital and I argued with them and finally after being told that they could get here there before they could get the helicopter there (not to mention I couldn't ride) they agreed to put her on the ambulance and sent her. The ambulance driver had never been to this hospital and didn't even know how to get there. With directions from mom and 3 nurses we finally got on the road. Angel coded 4 times in the ambulance. When we got there a strange kind of peace came over me (being home I guess). After a rough night with 5 more codes, the next morning she was fine. After 4 weeks we were sent home with no explanation as to what happened. My opinion; vegal nerve reaction.
She was still refluxing some and so we started playing with her feeds and finally ended up with no more bolus feeds. Instead we went on a pump over night. This worked perfectly and she quit refluxing. We started seeing an OT for feeding. The first thing was fluid, after this we started solid foods (chips and fries), junk food slowly she started eating. The whole process took 1 ½ years. I wouldn't pull the G-tube until we had gone without it for a year. She has never been on the scale as far as her weight- always under and she still is.
She had her feet operated on when she was 1 and learned to walk with a 5 pound cast on both legs. This has never seemed to make any difference to her. She just got up and went. We still have splints and probably always will, even though these are just inside her shoes and not noticeable. She doesn't jump and run as much as the other kids, but she does her share. We see the ortho doctor every 2 years and he is very pleased with her progress.
She had to have her eyes operated on in 1999. They roll and she can't focus without seeing double and when she tries to focus, they turn. That drives me crazy and now that we are a year out, it seems to be happening again. So we will probably have to have it done again.
Now we are up to the present and I just found out July 6th 2000 that she has a severe hearing loss in both ears at high frequency sounds, so now we are going to get hearing aids. Her pediatrician has confirmed that the antibiotics she was on as a baby has caused this. We are still taking it one day at a time and thanking God we have that day.
We lost my mother on Nov. 29, 1999, and this has been hard on all of us. My mother was very involved in Ange's life and Angel thought of her as another mother. She was there day in and day out. Angel has started asking a lot of questions about her scars and things that happened over the years and I just try to be as honest as possible. My mom was better at that than I am. We are moving into our new house the first of Oct. and hopefully we will turn a new corner and things will get better.
Sincerely,
Angelias mom, Janice Crawford (North Carolina)
So let's begin with Ange's story. First I guess that it is important to know that I am a single mother of two very special children. My first child Shane was born October 6 1991, other than being a preemie and only weighing 4 pounds 4 ounces he was normal and was in the hospital 5 days.
For my 31st birthday in June of 1990 I was delighted and hurt at the same time. I had developed blood poisoning and went to the local hospital ER room to be treated and before they started the treatment they did a pregnancy test. Much to my surprise with a 9 year old son and now very single I learned that we should expect a new baby probably in January to start a new year. My first visit to the doctor at less than 6 weeks to confirm the pregnancy I had a ultrasound there wasn't even a baby at this point just a yolk sack but I was very much pregnant and a little scared. One child at this point I thought was enough and Shane (my son) wasn't sure if he wanted a new baby brother or sister. All of my doctor's visits were normal and things were going great. I was getting very excited about having a new baby.
One week before Thanksgiving I had a ultrasound done at my request to try and determine what the sex of the baby would be. On the day of the ultrasound my mother and son were present and we were very excited about finding out what the baby would be. My son was amazed at the "railroad tracks" (spine) and then as the baby started turning and moving he was even more the only downfall was it's a girl. As the test progressed the technician finally stopped and spit out a roll of pictures and left the room. Thinking the test was done I proceeded to get dressed only to be told a few minutes later that in the excitement of showing my son and mother the baby that she had gotten the test in the wrong order. So we tried again and she spit more pictures out and left the room again. Only this time when she returned she told me that I needed to have a seat and see the doctor I knew something was wrong. After 10 minutes of waiting I was taken to the doctors office to 4 or 5 books on his desk and hear that he didn't know how to start with what was wrong and had to do some digging before telling me that my daughter had a Diaphragmatic Hernia (like I new what that was). I was also told that I wouldn't be seen at this office anymore because they were not prepared to deal with a condition they knew nothing about. I was seen at The hospital the Monday after Thanksgiving and went through more ultrasounds and a amniocentesis at the end of a very long day with more tests than I can remember I was told that if the amniocentesis showed any other defects that they would refuse to do anything to save the baby. Her hernia was so severe that they didn't think she had any lung at all on her right side and her heart was pushed into her back. At this time she was given a 10% survival rate. For the next 2 ½ months I went to the hospital 3 times a week for stress test and more ultrasounds.
I guess I went through the normal stress and strain wondering if I had done something to cause this to happen to my baby. After 2 months of soul searching and finally believing the doctors I finally decided it wasn't my fault after all. Me and Shane (my son) decided that we needed to pick a name. After a lot of looking and listening, we heard a song and decided that it was our name so we finally had Angelia Danielle Crawford named after Richard Marx's "Angelia." I decided that if nothing else it would look nice on a head stone. At this point we were being told that her chances were now at 2%. Finally on January 23rd we were admitted into the hospital to have a c-section (my choice after already having one and not wanting to add stress) for the next morning. So on January 24, 1991, at 11:36am, Angelia was born. My mother got to see her first since I was under. I was awakened in the recovery room and tried to get up, only to be sedated again. I woke up in my room and found a picture taped to my bed. All the tubes and wires were hard to take. I went to see her about 3:00pm and was totally unprepared for the sight even though I had been in the NICU unit when I was about 8 ½ months along. She was huge compared to my first child and it was hard to believe she was as sick as they said. On the foot of her bed was a sign that read ANGEL. I asked her nurse, Amy Vining, (my angel) who had told them her name. She said no one, they just decided as she was brought into the unit that she looked like an angel. I wonder sometimes if that was their way of telling me that they didn't think she would make it. As I went in to see her for the first time, I noticed that her feet were laying the wrong way. She also had clubfeet. At The hospital, up till this point, the surgery was done as soon as possible after birth, but her doctor, Dr. Shorner, (as close to God as anyone on this earth in my eyes) decided to wait for 3 days to give her a chance to gain her strength. So for 3 days we hoped and prayed that she would make it till her scheduled surgery date and then we prayed she would make it through surgery. She did, and thank God we never had to put her on ECMO. She was vent dependent for 2 weeks. Since I had her at the hospital and a c-section, I was a patient for 7 days. After I was discharged, I stayed with a Aunt and some cousins until she was moved into a room on the 5th floor. I moved into her room on February 4th and our siege began. As soon as she was put in a room her feet were cast up to her thighs and she started refluxing. Of course her doctors residents really didn't think she was so when they checked her cast because her toes were turning blue, she promptly refluxed in his face. Case closed about reflux. When Angel was 5 weeks old, I went back to the clinic and was told that I had cervical cancer and had to make some choices. Freeze the cervix and have it checked out every 6 months or I could have everything taken out. My choice was not to deal, so I had it taken out. At 2 months Angel had her 1st nissen and no help, well maybe for one week, then back to reflux. Angel had never nursed or had a bottle. As soon as you get in front of her face she would start refluxing. Actually she had projectile reflux with this. We were told not to handle her as every time she was moved (and even when she wasn't), she would start refluxing. In April I came down with a massive infection and was readmitted. She came down with pneumonia in May of 91 and at the same time one of the other babies on the floor beside us died. Stevie's mom, Denise, and I had become very close and this was hard on all of us. The day Stevie was viewed at the funeral home Angel had a night where she threw up blood and we called the resident on call to come check her and he was to busy in the PICU unit taking care of sick kids so I had a fit and insisted that her surgeon be called since his resident was too busy .
Well he finally came and told me nothing was wrong but he would do a blood crit and, low and behold, she had to have a blood transfusion. Last time that resident was allowed in my room. We had another nissen within 2 weeks because she was still refluxing. At this time they also put in a feeding tube. Angel had a central line until this point and we were finally able to leave the room without dragging a pole with us. This was heaven. We had never been allowed to leave the hall in front of her room until this point. I noticed that Angel was looking really yellow and we did some blood work to find out that she had a very rare form of hepatitis J or K Something they didn't even know how to treat. Her billerium soared at this point and she turned an ugly shade of green. Some of the nurses thought that the central line and her hepatitis were the main culprit. I really wondered about the last blood transfusion at this point. By this time I had been at the hospital for 5 months and didn't know when we would be allowed to go home. This had taken its toll on everyone in my family. My son not only had a sister who was very sick but he had lost his mother for 5 months. I never left the hospital for more than 4 weekends at this time. I was so tired of the hospital, I couldn't stand it. I would call my family and cry because I just wanted to go home and I didn't feel anyone was telling me anything. As I became more depressed her surgeon (unknown to me) had requested that I be reserved a room at South because they thought I would be having a nervous breakdown. I didn't just learn that I could go over to the library and do all the research I wanted, I was pulling up case files and then going back and asking all kinds of questions. When the doctors found out what I was doing they had all the medlines restricted to medical personnel only but by then it was too late I really started pushing to go home on my birthday, which was June 25th.
By this time I was, and had been doing, all of Angel's care for at least 3 months. I was finally released on July 1st,, only because Angels liver was so bad that she was on top of the liver transplant list and her surgeon decided that I should be able to go home because within 3 or 4 weeks she would have to be readmitted to wait for a transplant. He wanted me to say that I had been able to take her home. After 2 days, one of the nurses who had been taking care of her came to visit and we went to the NC Zoo, which was about 10 miles from my home. We went and got everything so I could feed Angel, except her formula, and of course she got hungry. She cried for about 45 minutes until we got home and fed her. Then she started refluxing again. Patricia, her nurse from the hospital, cried as much as I did and told me to call the hospital because she would have to go back. I did call all I could get was a resident who didn't know what to do so I stayed home and just dealt with the reflux. There was nothing they could do I couldn't, so when they called back 2 days later to tell me to bring her back, I refused. After 3 weeks she went back for a checkup and her billerium had dropped just 1 point but it was enough for me and I refused to have her readmitted. Her second checkup in 2 weeks showed it had dropped another point so we came off the transplant list and did a lot of praying. She still had reflux after every feed so I discussed options and was told there was none. Angel refluxed a lot when she was 9 months old and turned blue so we were back in the hospital for 1 month. This time I had a pediatric resident who came to my room and begged me to bring her to him. At this point she didn't have a pediatrician because none in my hometown knew what her condition was so therefore they wouldn't see her as a patient. So I finally got a pediatrician even though he was over an hour away.
Dr. Steve Novack was a Godsend. He was willing to help me make adjustments with Angel's feeds and go through a lot of questions about what would be normal for her. At 10 months, Angel got chicken pox. For 3 days I didn't sleep- nothing but try to make her comfortable. Finally I called Steve and was told to bring her to the ER (for my sake not hers). When we got there, we were put in isolation in the ER and then a whole herd of residents came in to see her. When Steve finally got down to see her he admitted her (worse case he had ever seen). Once in an isolation room on the 5th floor they started her on Aclyvir, a miracle drug in my opinion (used for herpes outbreaks). That night I could tell it was helping. We finally went home after 5 days.
Angel was still refluxing seriously and so finally when she was 11 months and 2 weeks we were readmitted for a 3rd or 4th nissen. I can't keep count. My original surgeon, Dr. Shorner, had left the hospital and gone to Dartmouth (our loss their gain) and we had a new surgeon.
We did not get along at all. I knew that Angel had severe scaring and that this next surgery would be long one. He didn't agree and told me that there was nothing in her charts to say otherwise and this surgery would last about 4 hours so I finally said, whatever. Within 1 hour of surgery they came to tell me that he had cancelled all other surgeries for the day and it would be awhile (8 hours) when he was done. It was a different story- all the sudden I knew what I was talking about. We were there for 5 days and then discharged (he didn't believe in keeping patients for 5 days). Well a day before discharge Angel started having severe loose stools, which I knew wasn't good but I was wrong again in his opinion, so home we went. At this time before we left, standing in the hall talking to one of the nurses who was eating potato chips, Angel reached over and took one and put it in her mouth chewed and swallowed. A first for her; she had never put anything in her mouth, not toys, fingers, nothing. I was a little freaked because we were told coming out of surgery nothing by mouth for 4 weeks. Well for the next 5 days we were in the pediatricians office every other day for dehydration. Finally when I started getting very upset, Dr. Novack called the hospital and was informed that Angel had a stool sample done the day we were discharged and it came back the next day with rotovirus. None of the staff had bothered to call. So back we went for 3 weeks (with one very mad mom). When we finally got that worked out she had turned 1 year old so the next step was off formula and onto pediasure. Pediasure at this time was hard to get and it took me 2 weeks before the order came in at my home this was also on a Friday and so at 1:00pm when I finally got it in my hands I called Dr. Novack and asked how to switch. Just change it over at the next feed he said. So at 5:00 that day I did and as soon as I put it in the feeding tube she started screaming so I called the hospital. Dr. Novack was gone for the weekend and I ended up with a doctor from the NICU, who promptly told me that nothing was wrong. I was overreacting and Angel proceeded to code. So I gave him a few choice words and called a ambulance. When the first responder got there and took one look at her foley cath coming out of her stomach and all these scars he panicked and told me he didn't know what to do. I panicked and told him to ignore everything except that she was wasn't breathing and had no heartbeat, which he did. They took her downstairs and put her on the back of a pick up until the ambulance got there and off to a different Hospital we went. When we got there they panicked, which made me worse and wanted to air flight her back to the first hospital. For the next hour the hospital and I argued with them and finally after being told that they could get here there before they could get the helicopter there (not to mention I couldn't ride) they agreed to put her on the ambulance and sent her. The ambulance driver had never been to this hospital and didn't even know how to get there. With directions from mom and 3 nurses we finally got on the road. Angel coded 4 times in the ambulance. When we got there a strange kind of peace came over me (being home I guess). After a rough night with 5 more codes, the next morning she was fine. After 4 weeks we were sent home with no explanation as to what happened. My opinion; vegal nerve reaction.
She was still refluxing some and so we started playing with her feeds and finally ended up with no more bolus feeds. Instead we went on a pump over night. This worked perfectly and she quit refluxing. We started seeing an OT for feeding. The first thing was fluid, after this we started solid foods (chips and fries), junk food slowly she started eating. The whole process took 1 ½ years. I wouldn't pull the G-tube until we had gone without it for a year. She has never been on the scale as far as her weight- always under and she still is.
She had her feet operated on when she was 1 and learned to walk with a 5 pound cast on both legs. This has never seemed to make any difference to her. She just got up and went. We still have splints and probably always will, even though these are just inside her shoes and not noticeable. She doesn't jump and run as much as the other kids, but she does her share. We see the ortho doctor every 2 years and he is very pleased with her progress.
She had to have her eyes operated on in 1999. They roll and she can't focus without seeing double and when she tries to focus, they turn. That drives me crazy and now that we are a year out, it seems to be happening again. So we will probably have to have it done again.
Now we are up to the present and I just found out July 6th 2000 that she has a severe hearing loss in both ears at high frequency sounds, so now we are going to get hearing aids. Her pediatrician has confirmed that the antibiotics she was on as a baby has caused this. We are still taking it one day at a time and thanking God we have that day.
We lost my mother on Nov. 29, 1999, and this has been hard on all of us. My mother was very involved in Ange's life and Angel thought of her as another mother. She was there day in and day out. Angel has started asking a lot of questions about her scars and things that happened over the years and I just try to be as honest as possible. My mom was better at that than I am. We are moving into our new house the first of Oct. and hopefully we will turn a new corner and things will get better.
Sincerely,
Angelias mom, Janice Crawford (North Carolina)
Saturday, July 25, 2015
July 25 - Dear Nicholas Sparks (Guest Blogger Melissa Johnson)
Dear Mr. Sparks,
My husband and I found out that we were expecting our second child in October of 1997. We were so excited, we had been trying for a while, and I finally went on a fertility drug called Clomid. The pregnancy was going so perfect; I had absolutely no problems. We did a test called Tri-Screen to determine if there were any birth defects. The test came back high risk in Down Syndrome, we were devastated. We went in to my OB/GYN and I had an amniocentesis, and an ultrasound at 16 weeks. The ultrasound showed nothing abnormal, but he said we would have to wait for the amnio to come back to be certain. Fortunately all the chromosomes were normal, and we found out we were expecting another boy! We had already decided on names before I even got pregnant. His name would be Matthew Ryan. Four weeks later we went in for our regular 20-week ultrasound. I knew something was wrong by the look of the technician's face. He brought our OB/GYN in, and they told us that our baby's stomach was up by his heart, and his heart was pushed over to the other side of his chest. They suspected CDH, and that he could possibly die from this. My husband and I were again completely devastated. They sent us to a specialist to get a second opinion, and they confirmed again that it was definitely CDH, and that some of his liver was up also which made his chances of surviving very small. They gave us three options we could terminate the pregnancy, and there is no possible way we were going to that. Option two would be to go full term, and see what happens. They gave him an optimistic 20% chance of surviving. The doctor explained to us in great detail about ECMO, and what could happen on ECMO. Option three would be to have fetal surgery. They would make an incision from hip to hip, then poke three or four different holes in my uterus for scopes. They would then put clips on his throat to keep the amniotic fluid from escaping his mouth, and then that would make his lungs grow by forcing the intestines, stomach, and liver down. We went out to the University of California San Francisco where they did this surgery and met with Dr. Harrison and his team.
The team had to decide whether we would be a candidate or not, because they only did this surgery on the worst cases, and unfortunately we were a candidate. We decided we would go through with the fetal surgery, because we believed and still do to this day that was the only chance our son had at surviving, and I would do anything to give my son a chance at life, even if that meant sacrificing mine. We also felt that if we didn't go through with the surgery, and our son died we may never be able to forgive ourselves. But if our son died even with the surgery we could at least live with ourselves knowing that we tried everything in our power to save him. We live in Colorado so this also meant me living in San Francisco until he was able to come home. This was an experimental surgery, and we were not sure our insurance company would pay for it, luckily they did. Matthew would be the 12th to have this surgery done with the endoscopic scopes at UCSF. They did the surgery about four weeks later, I was 26 weeks. The surgery went wonderfully the only problem was that the machine that clips his trachea had jammed. It tore his trachea, which they said they wouldn't be able to tell how bad it was until he was born. Matthew and I had done wonderfully, and they started seeing lung growth just a few days after the surgery, which they said was remarkable since they usually see it after at least a week. After the surgery I would have to be on bedrest until Matthew was born, we got a room at the Ronald McDonald House a week after the surgery. Three days after we arrived at the House my water broke. I was very scared because I was only 27 weeks along. I managed to hold off for three more weeks. On May 14, 1998, I was 30 weeks along and developed an infection so they had to take him by C-Section. This C-Section is different than most, they put me under anesthesia so I don't remember anything but what they told me. When he was delivered still attached to me they took the clips off of his trachea, and quickly stitched it up. They said the tear was not as bad as they had originally thought. Then they cut the cord, and quickly intubated him, and he was rushed to the ICN. The first thing I asked when I came to was "Is my baby alive?" The nurse said that he was doing better than they had expected him to, Matthew was on a conventional ventilator. Matthew had 50% of his left lung, and almost 100% of his right lung, so the fetal surgery had worked. We were so happy, but Matthew was not out of the woods yet. They wouldn't let me see him until I was totally out of my anesthesia. They brought me a picture of him, but I was so loaded up on all of the drugs that my vision was blurry, and I couldn't even see what he looked like. They finally wheeled me into the ICN to see him, and he was beautiful. All I could see was my son; I didn't even see the tubes and wires going in out of his little body. The second that I saw him I thanked God for sending him to us, we are so blessed. He was so tiny he weighed 2lbs. 10oz. and was 15 inches long. Later that night they had to put him on a high frequency ventilator, he was on that for about a week and a half in total. They would put him back on the conventional, but then he would fail, and have to go back to the high frequency ventilator. He did that a few times. A week after he was born he had his CDH repair using a Gortex patch. We were very fortunate that Matthew was not born with any other birth defects, because we were told when there is one birth defect there could be others. We were so afraid when he would stop breathing and turn blue, and the doctors would have to do CPR on him. That has happened to us so many times that I can't even count. No baby should ever have to go through something like this.
The next few months were spent weaning him off of his ventilator. My husband and my other son would come out every other week. That was so hard being away from them, but we managed somehow.
We were stronger than we ever thought we could be. I got to finally hold my son for the first time after a month, I will never forget what that felt like, I can't even explain it. It was just so wonderful my son had even made it this long. The doctors said he was doing wonderfully, and that we would probably be home by our due date which was July 21st. That day came and went they had tried to extubate Matthew a few times, and he even pulled it out himself a couple of times, but he just couldn't support himself. They did what is called a bronchoscope. They looked down Matthew's trachea with a scope, and found that he had a floppy airway, which they call tracheomalacia. They said he would eventually grow out of that as he gets stronger, so they decided to transport us back to Denver. I was sad to leave I had been there for four months, and had made friends, but I was so excited that we would finally be coming home to our family. We were transported by jet to the hospital where the surgeon that recommended Dr. Harrison was. We had to get used to new nurses, doctors, surgeons, and the way they did things. They tried to extubate him numerous times; the longest he lasted was three days. That was so wonderful not to have a tube down his throat. They did another bronchoscope, and found some scar tissue blocking his trachea caused by the fetal surgery. It is like breathing through a straw, and having 75% of it blocked. They would have to do surgery to repair it. This surgery would be bigger than any surgery he had done. Because of where the scar tissue was located they would have to open him up like open heart surgery, and he would most likely have to go on a heart and lung machine. Then they would have to break his sternum to get to where they needed to take out the scar tissue, and reconstruct his trachea. His trachea was curved so they also had to straighten it, and they used some cartilage from his ribs. We were terrified, but I believed he would do fine. He did, and he came out of surgery fighting, literally. They didn't even have to use the heart-lung machine (ECMO) he was so strong during the whole thing. The surgery was successful. They tried to extubate him, and he still could not do it. They looked again, and found that he had severe tracheomalacia. They decided to do a tracheostomy. After they put in his trach, it was like he was a different baby. He could do so much more now. Matthew had been refluxing, which they said was normal for CDH babies. They did a Nissen-Fundoplication, and also put a G-Tube in. After that surgery he started to gain more weight, which is what he needs to eventually get his trach out. He has tolerated his feeds, and we are currently working on giving him fruit and vegetables. In the last week he has tried some crackers. He doesn't take much, but it is a start. He is getting better about gagging when it goes down his throat. He is sitting without support now, and we are trying to build up strength in his legs for him to stand. They say developmentally he is where he should be for his corrected age. Matthew is a little over 11 months now, and just came home for the first time. He had been ready to come home for a couple of months, but in Denver there was a huge shortage of home nurses. Matthew was home for four days, and then had to go back in the hospital. He got a blood infection, and then we learned his patch came loose. Some of his bowel and colon were up in his chest. He recovered from the surgery, and came home after two weeks in the hospital. If there is any advice that I can give it would be to be there for your baby, and give them the love and strength that they need. With your love and support behind them they will overcome anything. Through the eleven months of my son being in the hospital I have missed two days, and that was because I was sick, and didn't want him to get infected, otherwise I have been at the hospital every day of his life. The one thing that kept us going was Matthew's smile. He came out of his 16 surgeries with a smile. I would recommend if you know that your baby has CDH before he/she is born to tour the N.I.C.U., and possibly see a baby on ECMO. We did, and I think that helped us out so much, it wasn't such a shock when the time came because we knew what to expect. I feel very fortunate that we had found out that Matthew had CDH during the pregnancy, because I feel it gave us time to prepare as much as we could. It would be nice to hear from parents who are thinking about doing the fetal surgery or who have had it done, and what your baby's outcome was. I would also like to hear from parents who have children with a tracheostomy, if you could give us some advice, and how long your child had it, or will have to have it. We believe miracles can happen, because Matthew is living proof of that. The name Matthew means "Gift of God", and we thank God every day for his tremendous gift to us. I don't think I deserve such a gift. That gives me even more reason to protect and love him with all of my heart and soul.
____________________________________________________________________________________
Since I wrote Matthew's story too much has happened. Matthew came home from the hospital in April 1999. He had to go back in the hospital a week after he came home. His patch had broke so they had to repair his hernia patch. He came home a week later, and was able to spend his 1st birthday at home with all of his family. It was so wonderful. Matthew had no problems for the next three months. On July 10th Matthew stopped breathing, and his ventilator alarm never went off. He was taking a nap, and we usually checked on him every 15 to 20 minutes. My husband did CPR until the paramedics came. They were able to get his heart beating again. Matthew suffered severe brain damage, because he was without oxygen for at least 10 minutes. They said he would probally never come out of his coma. We waited two days to see if there would be any changes, and it was only getting worse. His brain was swelling more and more. On July 12, 1999 we decided to let him go. That was the hardest thing we have ever done. I hope none of you will ever have to make that awful decision. We knew we did the right thing, and we know Matthew is in a better place. In heaven there are no tubes, surgeries, or pain. He will be with us in our hearts forever.
Sincerely,
Matthew's mom, Melissa Johnson (Colorado)
My husband and I found out that we were expecting our second child in October of 1997. We were so excited, we had been trying for a while, and I finally went on a fertility drug called Clomid. The pregnancy was going so perfect; I had absolutely no problems. We did a test called Tri-Screen to determine if there were any birth defects. The test came back high risk in Down Syndrome, we were devastated. We went in to my OB/GYN and I had an amniocentesis, and an ultrasound at 16 weeks. The ultrasound showed nothing abnormal, but he said we would have to wait for the amnio to come back to be certain. Fortunately all the chromosomes were normal, and we found out we were expecting another boy! We had already decided on names before I even got pregnant. His name would be Matthew Ryan. Four weeks later we went in for our regular 20-week ultrasound. I knew something was wrong by the look of the technician's face. He brought our OB/GYN in, and they told us that our baby's stomach was up by his heart, and his heart was pushed over to the other side of his chest. They suspected CDH, and that he could possibly die from this. My husband and I were again completely devastated. They sent us to a specialist to get a second opinion, and they confirmed again that it was definitely CDH, and that some of his liver was up also which made his chances of surviving very small. They gave us three options we could terminate the pregnancy, and there is no possible way we were going to that. Option two would be to go full term, and see what happens. They gave him an optimistic 20% chance of surviving. The doctor explained to us in great detail about ECMO, and what could happen on ECMO. Option three would be to have fetal surgery. They would make an incision from hip to hip, then poke three or four different holes in my uterus for scopes. They would then put clips on his throat to keep the amniotic fluid from escaping his mouth, and then that would make his lungs grow by forcing the intestines, stomach, and liver down. We went out to the University of California San Francisco where they did this surgery and met with Dr. Harrison and his team.
The team had to decide whether we would be a candidate or not, because they only did this surgery on the worst cases, and unfortunately we were a candidate. We decided we would go through with the fetal surgery, because we believed and still do to this day that was the only chance our son had at surviving, and I would do anything to give my son a chance at life, even if that meant sacrificing mine. We also felt that if we didn't go through with the surgery, and our son died we may never be able to forgive ourselves. But if our son died even with the surgery we could at least live with ourselves knowing that we tried everything in our power to save him. We live in Colorado so this also meant me living in San Francisco until he was able to come home. This was an experimental surgery, and we were not sure our insurance company would pay for it, luckily they did. Matthew would be the 12th to have this surgery done with the endoscopic scopes at UCSF. They did the surgery about four weeks later, I was 26 weeks. The surgery went wonderfully the only problem was that the machine that clips his trachea had jammed. It tore his trachea, which they said they wouldn't be able to tell how bad it was until he was born. Matthew and I had done wonderfully, and they started seeing lung growth just a few days after the surgery, which they said was remarkable since they usually see it after at least a week. After the surgery I would have to be on bedrest until Matthew was born, we got a room at the Ronald McDonald House a week after the surgery. Three days after we arrived at the House my water broke. I was very scared because I was only 27 weeks along. I managed to hold off for three more weeks. On May 14, 1998, I was 30 weeks along and developed an infection so they had to take him by C-Section. This C-Section is different than most, they put me under anesthesia so I don't remember anything but what they told me. When he was delivered still attached to me they took the clips off of his trachea, and quickly stitched it up. They said the tear was not as bad as they had originally thought. Then they cut the cord, and quickly intubated him, and he was rushed to the ICN. The first thing I asked when I came to was "Is my baby alive?" The nurse said that he was doing better than they had expected him to, Matthew was on a conventional ventilator. Matthew had 50% of his left lung, and almost 100% of his right lung, so the fetal surgery had worked. We were so happy, but Matthew was not out of the woods yet. They wouldn't let me see him until I was totally out of my anesthesia. They brought me a picture of him, but I was so loaded up on all of the drugs that my vision was blurry, and I couldn't even see what he looked like. They finally wheeled me into the ICN to see him, and he was beautiful. All I could see was my son; I didn't even see the tubes and wires going in out of his little body. The second that I saw him I thanked God for sending him to us, we are so blessed. He was so tiny he weighed 2lbs. 10oz. and was 15 inches long. Later that night they had to put him on a high frequency ventilator, he was on that for about a week and a half in total. They would put him back on the conventional, but then he would fail, and have to go back to the high frequency ventilator. He did that a few times. A week after he was born he had his CDH repair using a Gortex patch. We were very fortunate that Matthew was not born with any other birth defects, because we were told when there is one birth defect there could be others. We were so afraid when he would stop breathing and turn blue, and the doctors would have to do CPR on him. That has happened to us so many times that I can't even count. No baby should ever have to go through something like this.
The next few months were spent weaning him off of his ventilator. My husband and my other son would come out every other week. That was so hard being away from them, but we managed somehow.
We were stronger than we ever thought we could be. I got to finally hold my son for the first time after a month, I will never forget what that felt like, I can't even explain it. It was just so wonderful my son had even made it this long. The doctors said he was doing wonderfully, and that we would probably be home by our due date which was July 21st. That day came and went they had tried to extubate Matthew a few times, and he even pulled it out himself a couple of times, but he just couldn't support himself. They did what is called a bronchoscope. They looked down Matthew's trachea with a scope, and found that he had a floppy airway, which they call tracheomalacia. They said he would eventually grow out of that as he gets stronger, so they decided to transport us back to Denver. I was sad to leave I had been there for four months, and had made friends, but I was so excited that we would finally be coming home to our family. We were transported by jet to the hospital where the surgeon that recommended Dr. Harrison was. We had to get used to new nurses, doctors, surgeons, and the way they did things. They tried to extubate him numerous times; the longest he lasted was three days. That was so wonderful not to have a tube down his throat. They did another bronchoscope, and found some scar tissue blocking his trachea caused by the fetal surgery. It is like breathing through a straw, and having 75% of it blocked. They would have to do surgery to repair it. This surgery would be bigger than any surgery he had done. Because of where the scar tissue was located they would have to open him up like open heart surgery, and he would most likely have to go on a heart and lung machine. Then they would have to break his sternum to get to where they needed to take out the scar tissue, and reconstruct his trachea. His trachea was curved so they also had to straighten it, and they used some cartilage from his ribs. We were terrified, but I believed he would do fine. He did, and he came out of surgery fighting, literally. They didn't even have to use the heart-lung machine (ECMO) he was so strong during the whole thing. The surgery was successful. They tried to extubate him, and he still could not do it. They looked again, and found that he had severe tracheomalacia. They decided to do a tracheostomy. After they put in his trach, it was like he was a different baby. He could do so much more now. Matthew had been refluxing, which they said was normal for CDH babies. They did a Nissen-Fundoplication, and also put a G-Tube in. After that surgery he started to gain more weight, which is what he needs to eventually get his trach out. He has tolerated his feeds, and we are currently working on giving him fruit and vegetables. In the last week he has tried some crackers. He doesn't take much, but it is a start. He is getting better about gagging when it goes down his throat. He is sitting without support now, and we are trying to build up strength in his legs for him to stand. They say developmentally he is where he should be for his corrected age. Matthew is a little over 11 months now, and just came home for the first time. He had been ready to come home for a couple of months, but in Denver there was a huge shortage of home nurses. Matthew was home for four days, and then had to go back in the hospital. He got a blood infection, and then we learned his patch came loose. Some of his bowel and colon were up in his chest. He recovered from the surgery, and came home after two weeks in the hospital. If there is any advice that I can give it would be to be there for your baby, and give them the love and strength that they need. With your love and support behind them they will overcome anything. Through the eleven months of my son being in the hospital I have missed two days, and that was because I was sick, and didn't want him to get infected, otherwise I have been at the hospital every day of his life. The one thing that kept us going was Matthew's smile. He came out of his 16 surgeries with a smile. I would recommend if you know that your baby has CDH before he/she is born to tour the N.I.C.U., and possibly see a baby on ECMO. We did, and I think that helped us out so much, it wasn't such a shock when the time came because we knew what to expect. I feel very fortunate that we had found out that Matthew had CDH during the pregnancy, because I feel it gave us time to prepare as much as we could. It would be nice to hear from parents who are thinking about doing the fetal surgery or who have had it done, and what your baby's outcome was. I would also like to hear from parents who have children with a tracheostomy, if you could give us some advice, and how long your child had it, or will have to have it. We believe miracles can happen, because Matthew is living proof of that. The name Matthew means "Gift of God", and we thank God every day for his tremendous gift to us. I don't think I deserve such a gift. That gives me even more reason to protect and love him with all of my heart and soul.
____________________________________________________________________________________
Since I wrote Matthew's story too much has happened. Matthew came home from the hospital in April 1999. He had to go back in the hospital a week after he came home. His patch had broke so they had to repair his hernia patch. He came home a week later, and was able to spend his 1st birthday at home with all of his family. It was so wonderful. Matthew had no problems for the next three months. On July 10th Matthew stopped breathing, and his ventilator alarm never went off. He was taking a nap, and we usually checked on him every 15 to 20 minutes. My husband did CPR until the paramedics came. They were able to get his heart beating again. Matthew suffered severe brain damage, because he was without oxygen for at least 10 minutes. They said he would probally never come out of his coma. We waited two days to see if there would be any changes, and it was only getting worse. His brain was swelling more and more. On July 12, 1999 we decided to let him go. That was the hardest thing we have ever done. I hope none of you will ever have to make that awful decision. We knew we did the right thing, and we know Matthew is in a better place. In heaven there are no tubes, surgeries, or pain. He will be with us in our hearts forever.
Sincerely,
Matthew's mom, Melissa Johnson (Colorado)
Friday, July 24, 2015
July 24 - Dear Nicholas Sparks (Guest Blogger Jo Cowan)
Dear Mr. Sparks,
This is the story of Finn Solomon Cowan, our beautiful son. My husband Neil and I decided in the spring of 1999 that we wanted a baby, and so I took my folic acid, ate healthily, exercised moderately and did all the things I was supposed to do. That's why it seemed SO unfair when, at the 20-week scan, we were given the terrible news that our baby had a left-sided diaphragmatic hernia. Like most people, we were just debating whether or not to find out the sex of the baby, when we were hit with this bombshell. I can never find the words to describe how dreadful it is to be carrying a longed-for baby that has only been given a 50% chance of survival. One of the worst things was that everyone, obviously, could tell that I was pregnant and used to ask when it was due, whether it was a boy or a girl, what we were going to call it and so on. It was so difficult to answer. All my friends and work colleagues knew how serious the situation was, but to casual acquaintances all I could do was to answer quickly, not tell them the real truth, and change the subject.
We had a number of scans at Liverpool Women's Hospital, and an amniocentesis to find out if there were any related chromosomal problems. Three very long weeks of waiting. Fortunately there were no other problems, and in the meantime we read up on CDH and tried to keep as well and positive as possible. We were offered the possibility of a termination, and whilst I considered it, Neil didn't, so we just had the rest of the pregnancy to wait and wait and wait. In a way I wished I hadn't known about the problems, so that I could have enjoyed the pregnancy properly. It also spoiled my second pregnancy, because I was so afraid it would happen again. However I do know that the lady who did the original scan saved my baby's life because I am certain that if I had just delivered normally then he would have died because they would not have been aware that there were any problems. So I had to know about the problems because the medical staff had to know. Waking up every day knowing that all I could think about was my precious baby, yet I had to go to work and be professional and normal and try and be positive. I was realistic about the 50% diagnosis. Neil and I could talk about what would happen if our baby died. No one else was able to talk about it with us. It was too hard for them. I can't blame them. Almost all of our friends and family were supportive, but I found false positivity the hardest to deal with ("It'll all work out in the end!!" "Cheer up!") There was a very good chance that it wouldn't work out, and I wanted people to be realistic. I couldn't support any of our families through their distress, I had to be selfish and do it my own way. For instance, both my mum and mother-in-law wanted to buy baby clothes and equipment; it was their way of coping, to pretend that everything was normal and carry on, but I just couldn't deal with that, so I had to refuse. Similarly I couldn't deal with antenatal classes and so we had a couple of hours alone with an antenatal teacher, instead of going in a big group like everyone else.
I was induced two weeks early, so that all the medical staff could be available for the birth. The baby "Finn" was lovely, with black hair and dark blue eyes. We were able to have a quick look at him before he was taken away to be stabilised. He seemed very alert, looking around at everything. Later on we were able to go and see him. He was covered in wires and machinery. To me, he wasn't real. I didn't feel any connection to him. I knew I should, but it was like looking at someone else's baby. I tried hard to feel any emotion, especially when I was trying to produce some breastmilk, as the nurses advised me to look at his photo, but I just couldn't feel any connection to him at all.
The day after his birth, he was transferred to Alder Hey Hospital in Liverpool. He went in an ambulance, and we were told there wasn't really room for us to go with him. To this day I don't know why we didn't insist. When we got there, he had obviously been very unstable in the ambulance and the staff seemed very panicky. One re-iterated the chances of his survival at 50%. I thought he was saying that he thought things were going to be OK, but now I can see that he was probably trying to prepare us for the worst. I think I was on a hormone-induced high from the birth. I felt really out of it and wasn't really aware of how serious things were.
Finn was now on an oscillating ventilator, more "heavy duty" than conventional ventilation. He had two nurses looking after him, just him, day and night. Again, at the time I just thought, "Oh, that's nice!" but now I can see that it was because he was so ill. This was two or three days before Christmas, my emotions were all over the place. We spent every minute with him. (We were staying in Ronald McDonald House, next door to the hospital, so that we could be close by. I am so glad we didn't have to travel home and back every day. I am also so grateful that we didn't have any other children to look after.)
Eventually the doctors were able to stabilise him, he went back onto conventional ventilation on Christmas Day, and then on Boxing Day he had his operation. I had to sign the consent form, and it was so hard to do. As he was wheeled away, he was clutching my finger in that really strong way that babies have, and I had to pull him off so that he could go. I just remember crying and crying and wondering would he be back to us, would he be OK.
The operation lasted just over two hours. Neil and I were in the waiting room when the surgeon came in. I just had to look at his face to find out how the operation had gone. He had the biggest smile I had ever seen; he was genuinely delighted for us. Things had gone well and we were able to see Finn soon afterwards. His scar was small and neat and he seemed settled.
The next few days were good. He was of course kept ventilated, sedated and paralysed, but once or twice he opened his eyes and looked around. The play therapist had stuck some black-and-white pictures onto his incubator and he seemed to be really interested in those. However, we still didn't know if he was going to survive. I learned not to ask that big question, because no one could answer it, but to concentrate on the smaller issues like how much nutrition he was having, and what each machine or test was for. Apart from quick meal breaks, we spent every minute with him. We got to know the nurses pretty well. Almost without exception, they and the doctors and the rest of the staff were amazing, caring, supportive, helpful, informative, realistic, dedicated. How do you even begin to say thank you?
One evening we came back from dinner into Intensive Care and they wouldn't let us see him. There were curtains round his incubator, and lots of staff. We just sat and waited and waited and waited. Eventually they came out and took us over to him. He had suffered a pulmonary hypertensive crisis and looked terrible. I thought he was dead. He was white and still. He had to go back onto nitric oxide, a special gas which had helped him in the early days. It was such a setback, such a kick in the teeth, I felt floored by it, and unable to cope. I wasn't even able to phone my friends and family.
That, I think, was the worst day ever. I had been gradually allowing myself to hope that he would be OK, but now it felt like we were back to square one.
But he was strong, and gradually his blood gases improved and he needed less ventilator support. Finn began to open his eyes more as his medication was reduced, and he began to seem more like a real baby. I began to feel comfortable doing his "cares" changing his nappy, putting Vaseline on his lips, cleaning his eyes and nose.
At first I wasn't able to do those things for him because I thought the nurses were trying to get me to do it so that if he died, I would be able to know that I had looked after him. I thought it was one more indication that he wouldn't make it.
We celebrated New Year's Eve 1999 / 2000 the new millennium at his bedside, with fizzy grape juice from the nurses. It was so weird to know that the rest of the world was partying, while we were with our sick son in Intensive Care. But it felt right we were celebrating his life and the fact that he was with us, not looking forward to the future. One hour at a time that's what the doctors used to say to us.
Over the next few days he began to improve. He got very cross with his tubes, and tried on several occasions to pull them out! His ventilation was reduced to C-PAP and he tolerated more and more breastmilk (which I had been storing in the freezer at Ronald Macdonald House, along with the other residents' frozen pizzas!) One day, January the 9th, the doctors took his breathing tube out. It was so strange and lovely to be able to see his nose. Also had my first cuddle with him. He was 3 weeks old. From then on he began to grow stronger and stronger and he was moved out of intensive care to the neonatal ward, a less high-tech environment where we grew to know him as a baby rather than a collection of tubes and wires. I used to sit and cuddle him for hours, totally falling in love with him, and he learned to breastfeed. At last, 5 weeks after he was born, we took Finn home.
Although he is now a strong, happy, healthy 5 year old, in many ways the first year at home was just as scary as our time in hospital. I am going to write about that in the next edition.
Our son Finn survived a left-sided CDH and came home at 5 weeks old. We then breathed a sigh of relief and got on with the process of caring for a tiny baby who was often sick and had to take 4 different sorts of drugs to help his reflux. He was seen by specialists often for his breathing and his development. He had major problems putting weight on and is still only on the 2nd percentile – which means that 98% of kids his age are heavier than him. Weighing him seemed to be the only way that anyone medical could assess whether or not he was doing OK. I was breastfeeding him and I was told than my milk was "inadequate" (I'll never forget it) and that I should stop and put him on formula. It wasn't something I wanted to do, to say the least, but I had to give it a chance so that he could put on weight. However it didn't make any difference. He was on all sorts of special high-calorie milks, including Infatrini, and Maxijoule, but he still was sick every day or every other day and hardly put on any weight at all.
He ended up in hospital 5 times in that first year, with chest infections, which required oxygen, antibiotics, X rays and so on. He caught rotavirus (sickness and diarrhoea) from one stay. He was so skinny he had no reserves to draw on and a simple bug would bring him way down; a cold would go to his chest and he would be hospitalised again. At 18 months he had what was diagnosed as an asthma attack, and was really poorly, needing intravenous steroids. From then on he had an inhaler morning and night for 2 years. I have lost count of how many times we drove frantically up to the hospital in the middle of the night.
In spite of all this, Finn was a gorgeous baby boy who would "talk" to me all day and watch everything that was going on and take it all in. I always believed that he was "normal" mentally. However, I was beginning to notice that he wasn't developing as fast as other babies his age were. It was so hard to admit to myself. He didn't hold his head up, he hated being on his front, he was skinny and floppy and, at 8 months, couldn't sit. He hated solid food with "lumps" in and had to have everything pureed for ages until he was 2 or so.
He was referred for physiotherapy and went every week to a special school to swim in their pool, and then do exercises in a group afterwards. I HATED the thought that I was going to have a disabled child. I used to think about wheelchairs and special schools and just feel, "I don't want to be different. I don't want my baby to be different." I had worked with special needs kids in the past (I am a teacher) and loved it but I didn't want to be the mother of a child with special needs. My brother's son was younger than Finn, but could do more, as could my friends' children. It was so difficult to realise.
Gradually we took him off the drugs one by one, with the doctors' support. He began to get stronger, and one memorable day he sat for 8 seconds unaided. We took a whole roll of film that day! Looking back at it, he looks strong and healthy and bright. We loved him so much. He began to be less fussy with his food, although it was a long process. His first tooth came through and I started to worry less about him. He filled out and even started to look a bit chubby!
His physical development caught up quickly and he took his first steps at 10 and a half months, walking everywhere by 13 months. When I think about it, I don't know what started him getting so much better. Did he just grow out of being so ill, did I relax, did coming off the drugs that were supposed to be helping him do it what was it? I'll never know. But he was so great! He had a lovely laugh; he loved to be tickled, he loved feeding the ducks, he loved trains and cars and buses, and chocolate and biscuits and making a mess.
Around his first birthday we decided we wanted another baby. It took a lot of talking about; we couldn't have gone through everything we had been through again, this time with a toddler to look after too. I saw our GP and he referred us to a genetic counsellor who told us that, given our family history, the chances of having a baby with CDH again were only 2%. That still sounded quite high to us "1 in 50" but we crossed our fingers and started trying anyway.
Louis was born when Finn was 2 years old. He was a beautiful baby too- except everything went so well for him. He put on weight (in fact he was really chubby!), he fed beautifully, (my milk proved more than adequate this time and I fed him till he was 1!) he developed at the right pace - I was so pleased that I could do it all properly, I felt so much like I had something to prove and that I was succeeding this time where I had failed with Finn.
Finn was a difficult toddler (but then, so was Louis and just about every other 2 year old I have ever known!) but he turned into a wonderful child. He's now 5 and a half, loves school, hates fruit, loves watching videos. He does Tae Kwon-Do and has just learned to swim without armbands. He needs an inhaler when he has a cold, but is in general pretty robust and healthy and strong. He is skinny still, but he hasn't noticed that fact yet. His chest has some recession still and he has a "bulge" below his scar which balloons when he coughs or laughs (does anyone else have this?), but again he doesn't yet know that he looks slightly different. He knows his medical history and loves telling everyone about his operation and his "poorly tummy."
Finn is our little star, along with his brother, and we are delighted to have our two special boys.
Sincerely,
Finn's mom, Jo Cowan (Great Britain)
This is the story of Finn Solomon Cowan, our beautiful son. My husband Neil and I decided in the spring of 1999 that we wanted a baby, and so I took my folic acid, ate healthily, exercised moderately and did all the things I was supposed to do. That's why it seemed SO unfair when, at the 20-week scan, we were given the terrible news that our baby had a left-sided diaphragmatic hernia. Like most people, we were just debating whether or not to find out the sex of the baby, when we were hit with this bombshell. I can never find the words to describe how dreadful it is to be carrying a longed-for baby that has only been given a 50% chance of survival. One of the worst things was that everyone, obviously, could tell that I was pregnant and used to ask when it was due, whether it was a boy or a girl, what we were going to call it and so on. It was so difficult to answer. All my friends and work colleagues knew how serious the situation was, but to casual acquaintances all I could do was to answer quickly, not tell them the real truth, and change the subject.
We had a number of scans at Liverpool Women's Hospital, and an amniocentesis to find out if there were any related chromosomal problems. Three very long weeks of waiting. Fortunately there were no other problems, and in the meantime we read up on CDH and tried to keep as well and positive as possible. We were offered the possibility of a termination, and whilst I considered it, Neil didn't, so we just had the rest of the pregnancy to wait and wait and wait. In a way I wished I hadn't known about the problems, so that I could have enjoyed the pregnancy properly. It also spoiled my second pregnancy, because I was so afraid it would happen again. However I do know that the lady who did the original scan saved my baby's life because I am certain that if I had just delivered normally then he would have died because they would not have been aware that there were any problems. So I had to know about the problems because the medical staff had to know. Waking up every day knowing that all I could think about was my precious baby, yet I had to go to work and be professional and normal and try and be positive. I was realistic about the 50% diagnosis. Neil and I could talk about what would happen if our baby died. No one else was able to talk about it with us. It was too hard for them. I can't blame them. Almost all of our friends and family were supportive, but I found false positivity the hardest to deal with ("It'll all work out in the end!!" "Cheer up!") There was a very good chance that it wouldn't work out, and I wanted people to be realistic. I couldn't support any of our families through their distress, I had to be selfish and do it my own way. For instance, both my mum and mother-in-law wanted to buy baby clothes and equipment; it was their way of coping, to pretend that everything was normal and carry on, but I just couldn't deal with that, so I had to refuse. Similarly I couldn't deal with antenatal classes and so we had a couple of hours alone with an antenatal teacher, instead of going in a big group like everyone else.
I was induced two weeks early, so that all the medical staff could be available for the birth. The baby "Finn" was lovely, with black hair and dark blue eyes. We were able to have a quick look at him before he was taken away to be stabilised. He seemed very alert, looking around at everything. Later on we were able to go and see him. He was covered in wires and machinery. To me, he wasn't real. I didn't feel any connection to him. I knew I should, but it was like looking at someone else's baby. I tried hard to feel any emotion, especially when I was trying to produce some breastmilk, as the nurses advised me to look at his photo, but I just couldn't feel any connection to him at all.
The day after his birth, he was transferred to Alder Hey Hospital in Liverpool. He went in an ambulance, and we were told there wasn't really room for us to go with him. To this day I don't know why we didn't insist. When we got there, he had obviously been very unstable in the ambulance and the staff seemed very panicky. One re-iterated the chances of his survival at 50%. I thought he was saying that he thought things were going to be OK, but now I can see that he was probably trying to prepare us for the worst. I think I was on a hormone-induced high from the birth. I felt really out of it and wasn't really aware of how serious things were.
Finn was now on an oscillating ventilator, more "heavy duty" than conventional ventilation. He had two nurses looking after him, just him, day and night. Again, at the time I just thought, "Oh, that's nice!" but now I can see that it was because he was so ill. This was two or three days before Christmas, my emotions were all over the place. We spent every minute with him. (We were staying in Ronald McDonald House, next door to the hospital, so that we could be close by. I am so glad we didn't have to travel home and back every day. I am also so grateful that we didn't have any other children to look after.)
Eventually the doctors were able to stabilise him, he went back onto conventional ventilation on Christmas Day, and then on Boxing Day he had his operation. I had to sign the consent form, and it was so hard to do. As he was wheeled away, he was clutching my finger in that really strong way that babies have, and I had to pull him off so that he could go. I just remember crying and crying and wondering would he be back to us, would he be OK.
The operation lasted just over two hours. Neil and I were in the waiting room when the surgeon came in. I just had to look at his face to find out how the operation had gone. He had the biggest smile I had ever seen; he was genuinely delighted for us. Things had gone well and we were able to see Finn soon afterwards. His scar was small and neat and he seemed settled.
The next few days were good. He was of course kept ventilated, sedated and paralysed, but once or twice he opened his eyes and looked around. The play therapist had stuck some black-and-white pictures onto his incubator and he seemed to be really interested in those. However, we still didn't know if he was going to survive. I learned not to ask that big question, because no one could answer it, but to concentrate on the smaller issues like how much nutrition he was having, and what each machine or test was for. Apart from quick meal breaks, we spent every minute with him. We got to know the nurses pretty well. Almost without exception, they and the doctors and the rest of the staff were amazing, caring, supportive, helpful, informative, realistic, dedicated. How do you even begin to say thank you?
One evening we came back from dinner into Intensive Care and they wouldn't let us see him. There were curtains round his incubator, and lots of staff. We just sat and waited and waited and waited. Eventually they came out and took us over to him. He had suffered a pulmonary hypertensive crisis and looked terrible. I thought he was dead. He was white and still. He had to go back onto nitric oxide, a special gas which had helped him in the early days. It was such a setback, such a kick in the teeth, I felt floored by it, and unable to cope. I wasn't even able to phone my friends and family.
That, I think, was the worst day ever. I had been gradually allowing myself to hope that he would be OK, but now it felt like we were back to square one.
But he was strong, and gradually his blood gases improved and he needed less ventilator support. Finn began to open his eyes more as his medication was reduced, and he began to seem more like a real baby. I began to feel comfortable doing his "cares" changing his nappy, putting Vaseline on his lips, cleaning his eyes and nose.
At first I wasn't able to do those things for him because I thought the nurses were trying to get me to do it so that if he died, I would be able to know that I had looked after him. I thought it was one more indication that he wouldn't make it.
We celebrated New Year's Eve 1999 / 2000 the new millennium at his bedside, with fizzy grape juice from the nurses. It was so weird to know that the rest of the world was partying, while we were with our sick son in Intensive Care. But it felt right we were celebrating his life and the fact that he was with us, not looking forward to the future. One hour at a time that's what the doctors used to say to us.
Over the next few days he began to improve. He got very cross with his tubes, and tried on several occasions to pull them out! His ventilation was reduced to C-PAP and he tolerated more and more breastmilk (which I had been storing in the freezer at Ronald Macdonald House, along with the other residents' frozen pizzas!) One day, January the 9th, the doctors took his breathing tube out. It was so strange and lovely to be able to see his nose. Also had my first cuddle with him. He was 3 weeks old. From then on he began to grow stronger and stronger and he was moved out of intensive care to the neonatal ward, a less high-tech environment where we grew to know him as a baby rather than a collection of tubes and wires. I used to sit and cuddle him for hours, totally falling in love with him, and he learned to breastfeed. At last, 5 weeks after he was born, we took Finn home.
Although he is now a strong, happy, healthy 5 year old, in many ways the first year at home was just as scary as our time in hospital. I am going to write about that in the next edition.
Our son Finn survived a left-sided CDH and came home at 5 weeks old. We then breathed a sigh of relief and got on with the process of caring for a tiny baby who was often sick and had to take 4 different sorts of drugs to help his reflux. He was seen by specialists often for his breathing and his development. He had major problems putting weight on and is still only on the 2nd percentile – which means that 98% of kids his age are heavier than him. Weighing him seemed to be the only way that anyone medical could assess whether or not he was doing OK. I was breastfeeding him and I was told than my milk was "inadequate" (I'll never forget it) and that I should stop and put him on formula. It wasn't something I wanted to do, to say the least, but I had to give it a chance so that he could put on weight. However it didn't make any difference. He was on all sorts of special high-calorie milks, including Infatrini, and Maxijoule, but he still was sick every day or every other day and hardly put on any weight at all.
He ended up in hospital 5 times in that first year, with chest infections, which required oxygen, antibiotics, X rays and so on. He caught rotavirus (sickness and diarrhoea) from one stay. He was so skinny he had no reserves to draw on and a simple bug would bring him way down; a cold would go to his chest and he would be hospitalised again. At 18 months he had what was diagnosed as an asthma attack, and was really poorly, needing intravenous steroids. From then on he had an inhaler morning and night for 2 years. I have lost count of how many times we drove frantically up to the hospital in the middle of the night.
In spite of all this, Finn was a gorgeous baby boy who would "talk" to me all day and watch everything that was going on and take it all in. I always believed that he was "normal" mentally. However, I was beginning to notice that he wasn't developing as fast as other babies his age were. It was so hard to admit to myself. He didn't hold his head up, he hated being on his front, he was skinny and floppy and, at 8 months, couldn't sit. He hated solid food with "lumps" in and had to have everything pureed for ages until he was 2 or so.
He was referred for physiotherapy and went every week to a special school to swim in their pool, and then do exercises in a group afterwards. I HATED the thought that I was going to have a disabled child. I used to think about wheelchairs and special schools and just feel, "I don't want to be different. I don't want my baby to be different." I had worked with special needs kids in the past (I am a teacher) and loved it but I didn't want to be the mother of a child with special needs. My brother's son was younger than Finn, but could do more, as could my friends' children. It was so difficult to realise.
Gradually we took him off the drugs one by one, with the doctors' support. He began to get stronger, and one memorable day he sat for 8 seconds unaided. We took a whole roll of film that day! Looking back at it, he looks strong and healthy and bright. We loved him so much. He began to be less fussy with his food, although it was a long process. His first tooth came through and I started to worry less about him. He filled out and even started to look a bit chubby!
His physical development caught up quickly and he took his first steps at 10 and a half months, walking everywhere by 13 months. When I think about it, I don't know what started him getting so much better. Did he just grow out of being so ill, did I relax, did coming off the drugs that were supposed to be helping him do it what was it? I'll never know. But he was so great! He had a lovely laugh; he loved to be tickled, he loved feeding the ducks, he loved trains and cars and buses, and chocolate and biscuits and making a mess.
Around his first birthday we decided we wanted another baby. It took a lot of talking about; we couldn't have gone through everything we had been through again, this time with a toddler to look after too. I saw our GP and he referred us to a genetic counsellor who told us that, given our family history, the chances of having a baby with CDH again were only 2%. That still sounded quite high to us "1 in 50" but we crossed our fingers and started trying anyway.
Louis was born when Finn was 2 years old. He was a beautiful baby too- except everything went so well for him. He put on weight (in fact he was really chubby!), he fed beautifully, (my milk proved more than adequate this time and I fed him till he was 1!) he developed at the right pace - I was so pleased that I could do it all properly, I felt so much like I had something to prove and that I was succeeding this time where I had failed with Finn.
Finn was a difficult toddler (but then, so was Louis and just about every other 2 year old I have ever known!) but he turned into a wonderful child. He's now 5 and a half, loves school, hates fruit, loves watching videos. He does Tae Kwon-Do and has just learned to swim without armbands. He needs an inhaler when he has a cold, but is in general pretty robust and healthy and strong. He is skinny still, but he hasn't noticed that fact yet. His chest has some recession still and he has a "bulge" below his scar which balloons when he coughs or laughs (does anyone else have this?), but again he doesn't yet know that he looks slightly different. He knows his medical history and loves telling everyone about his operation and his "poorly tummy."
Finn is our little star, along with his brother, and we are delighted to have our two special boys.
Sincerely,
Finn's mom, Jo Cowan (Great Britain)
Thursday, July 23, 2015
July 23 - Dear Nicholas Sparks (Guest Bloggers Robert & Kimberly Job)
Dear Mr. Sparks,
I found out I was pregnant with my first child in September of 2002. My pregnancy progressed very well, and by December, my husband and I discovered we were having a girl. Because I am diabetic, I had to have frequent ultrasounds throughout the pregnancy. In January, I was seeing the doctor once every two weeks to have level II ultrasounds. It was during one of these level II ultrasounds that the doctor saw something in Alex's lungs. He couldn't distinguish exactly what it was. He explained it could be Cystic Adematoid Malformation, which is basically cysts inside the lung tissue, or it could be left-sided diaphragmatic hernia and the bubbles he was seeing were from her colon being in her chest cavity. He said she was doing great, and breathing wonderfully, so there was nothing to be too worried about, and he would know more as she continued to grow. He explained that I should start bi-weekly non-stress tests and weekly ultrasounds. I had a meeting with the doctor, a neonatologist, and a perinatal nurse who explained that they were almost positive it was left-sided diaphragmatic hernia and that it wasn't necessarily common, but it wasn't life threatening. They said it would be much worse if she had right-sided diaphragmatic hernia. They explained how my birth plan would be, and stressed that Alexandria would be taken directly to the NICU and within 24 hours she would have a surgery to repair her diaphragm and then everything would be fine. They briefly mentioned ECMO, but they said they weren't going to go into details because Alex should never need ECMO. At 38 weeks, I had an amniocentesis to check her lung development. They said it was good, but not where they wanted it, so they did another amnio the following week. They said everything was great, her lung mass was normal and so they induced me on Tuesday, May 6th at 10 p.m. After several hours of pushing and finally using the suction, Alexandria Katelyn Job was born at 12:06 a.m. on Thursday, May 8, 2003. I was allowed to kiss her head and then she was whisked off to NICU. After getting some rest, my husband and I went to the NICU to see her and talk to the neonatologist. She showed us chest X-Rays and said "well, she definitely has diaphragmatic hernia, and it's a pretty severe case, as all of her abdominal organs have migrated into the chest cavity." She explained that they would wait three days to do surgery as infants usually respond best after a couple of days rather than doing a surgery within 24 hours of birth. At this time, as far as my husband and I knew, she had left-sided diaphragmatic hernia and a surgery would repair everything and within a month or two, she would come home. The following morning I was woken up by another neonatologist who came to explain that Alex had taken a turn for the worst during the evening and she had to be put on nitric oxide. He said they had to transport her to another hospital who had ECMO capabilities because she was probably going to need to be placed on ECMO. When we got to the other hospital, they did surgery right away to put her on ECMO. Then a neonatologist came out to tell us that Alex was stable, but her outlook was pretty much 50/50 at that point. He said we had to have been expecting this when we found out that she had right-sided diaphragmatic hernia. We explained that we were always told that she had left-sided diaphragmatic hernia, and that she would have a surgery and come home within a month or two. This was the first time we were hearing that not only was there a chance, there was a high possibility she would not survive. She was on ECMO for seven days. The second day she was on ECMO, her head swelled to three times the normal size, and they said it was due to the capillaries being opened up from the suction she had during birth. They said there was no bleeding on her brain, and it was just cosmetic, it wasn't hurting her. My husband and I were there everyday all day and we made the two hour drive home to sleep for 2 or 3 hours when the NICU was closed for the doctors to make their rounds. After seven days, she was able to be taken off of ECMO and the following day she had surgery to repair the diaphragm. The surgery took 4 hours, and when the surgeon came out to speak to us, she was smiling and very confident. She said Alex had about two thirds of her diaphragm missing, and they did not know this until they opened her up, but they used a Gortex patch, and successfully moved all of her organs back into her abdomen. She explained that they had to remove her appendix, but she would be fine without it. She said that Alex had enough lung mass that she should do wonderfully and that we were "out of the woods." My husband, our families, and I all went out to celebrate that night. I started asking the nurses when I would be able to hold her like the other moms in the NICU did with their babies. I still had never had the opportunity to even touch her, other than brief kisses. Every time my husband and I even talked to her, she would get excited and start moving around and making all of her monitors go off. Most of the time the nurses asked us to be quiet and not touch her, as she was very sensitive to stimulation of any kind. As hard as it was, for almost 3 weeks, we had very brief contact with Alex. Five days after her surgery, my brother and his girlfriend came to see her. As we were walking into the NICU, Alex was surrounded by doctors. The doctor on duty explained that her pulmonary hypertension was back, and she was not getting enough oxygen again. They had to put her back on nitric oxide, but she wasn't responding well. He told us that due to the swelling in her head, they could not put her back on ECMO. He told us she most likely wasn't going to make it. That night was the hardest night, because we believed the doctor 100% when they said we were out of the woods. We stayed by her bedside watching her monitors, and she stayed stable, but at low oxygenation levels all night long. In the morning, her doctor explained that although she was not doing too well, there were things they could try and not to give up hope yet. She remained the same throughout that day. Her doctor told us to go to a hotel and get some rest around midnight that night. He said he would not hesitate to call if something went wrong. We got a call shortly after 5 a.m. Both my husband and I knew it could not be good news at that hour. We rushed over to the hospital and the doctor explained that Alex's kidneys and liver had stopped functioning and she was in renal failure. They said she still had about twelve to fourteen hours until the poison in her blood stream would stop her heart, so we had time to spend with her. I asked about finally holding her, and they said we could hold her with the machines on, or we could make a decision to turn off the life support and spend the last few minutes with her, holding her. She fought too hard for us, so the decision was not hard. We could no longer allow her to suffer for us, so we signed the DNR and had the life support removed. We sat and rocked her and held her for the first time as she was dying. On Sunday, May 25, 2003, our little angel passed away. We are so grateful for the time we had with her, and now she is finally free of pain.
Sincerely,
Alexandria's parents, Robert & Kimberly Job (Illinois)
I found out I was pregnant with my first child in September of 2002. My pregnancy progressed very well, and by December, my husband and I discovered we were having a girl. Because I am diabetic, I had to have frequent ultrasounds throughout the pregnancy. In January, I was seeing the doctor once every two weeks to have level II ultrasounds. It was during one of these level II ultrasounds that the doctor saw something in Alex's lungs. He couldn't distinguish exactly what it was. He explained it could be Cystic Adematoid Malformation, which is basically cysts inside the lung tissue, or it could be left-sided diaphragmatic hernia and the bubbles he was seeing were from her colon being in her chest cavity. He said she was doing great, and breathing wonderfully, so there was nothing to be too worried about, and he would know more as she continued to grow. He explained that I should start bi-weekly non-stress tests and weekly ultrasounds. I had a meeting with the doctor, a neonatologist, and a perinatal nurse who explained that they were almost positive it was left-sided diaphragmatic hernia and that it wasn't necessarily common, but it wasn't life threatening. They said it would be much worse if she had right-sided diaphragmatic hernia. They explained how my birth plan would be, and stressed that Alexandria would be taken directly to the NICU and within 24 hours she would have a surgery to repair her diaphragm and then everything would be fine. They briefly mentioned ECMO, but they said they weren't going to go into details because Alex should never need ECMO. At 38 weeks, I had an amniocentesis to check her lung development. They said it was good, but not where they wanted it, so they did another amnio the following week. They said everything was great, her lung mass was normal and so they induced me on Tuesday, May 6th at 10 p.m. After several hours of pushing and finally using the suction, Alexandria Katelyn Job was born at 12:06 a.m. on Thursday, May 8, 2003. I was allowed to kiss her head and then she was whisked off to NICU. After getting some rest, my husband and I went to the NICU to see her and talk to the neonatologist. She showed us chest X-Rays and said "well, she definitely has diaphragmatic hernia, and it's a pretty severe case, as all of her abdominal organs have migrated into the chest cavity." She explained that they would wait three days to do surgery as infants usually respond best after a couple of days rather than doing a surgery within 24 hours of birth. At this time, as far as my husband and I knew, she had left-sided diaphragmatic hernia and a surgery would repair everything and within a month or two, she would come home. The following morning I was woken up by another neonatologist who came to explain that Alex had taken a turn for the worst during the evening and she had to be put on nitric oxide. He said they had to transport her to another hospital who had ECMO capabilities because she was probably going to need to be placed on ECMO. When we got to the other hospital, they did surgery right away to put her on ECMO. Then a neonatologist came out to tell us that Alex was stable, but her outlook was pretty much 50/50 at that point. He said we had to have been expecting this when we found out that she had right-sided diaphragmatic hernia. We explained that we were always told that she had left-sided diaphragmatic hernia, and that she would have a surgery and come home within a month or two. This was the first time we were hearing that not only was there a chance, there was a high possibility she would not survive. She was on ECMO for seven days. The second day she was on ECMO, her head swelled to three times the normal size, and they said it was due to the capillaries being opened up from the suction she had during birth. They said there was no bleeding on her brain, and it was just cosmetic, it wasn't hurting her. My husband and I were there everyday all day and we made the two hour drive home to sleep for 2 or 3 hours when the NICU was closed for the doctors to make their rounds. After seven days, she was able to be taken off of ECMO and the following day she had surgery to repair the diaphragm. The surgery took 4 hours, and when the surgeon came out to speak to us, she was smiling and very confident. She said Alex had about two thirds of her diaphragm missing, and they did not know this until they opened her up, but they used a Gortex patch, and successfully moved all of her organs back into her abdomen. She explained that they had to remove her appendix, but she would be fine without it. She said that Alex had enough lung mass that she should do wonderfully and that we were "out of the woods." My husband, our families, and I all went out to celebrate that night. I started asking the nurses when I would be able to hold her like the other moms in the NICU did with their babies. I still had never had the opportunity to even touch her, other than brief kisses. Every time my husband and I even talked to her, she would get excited and start moving around and making all of her monitors go off. Most of the time the nurses asked us to be quiet and not touch her, as she was very sensitive to stimulation of any kind. As hard as it was, for almost 3 weeks, we had very brief contact with Alex. Five days after her surgery, my brother and his girlfriend came to see her. As we were walking into the NICU, Alex was surrounded by doctors. The doctor on duty explained that her pulmonary hypertension was back, and she was not getting enough oxygen again. They had to put her back on nitric oxide, but she wasn't responding well. He told us that due to the swelling in her head, they could not put her back on ECMO. He told us she most likely wasn't going to make it. That night was the hardest night, because we believed the doctor 100% when they said we were out of the woods. We stayed by her bedside watching her monitors, and she stayed stable, but at low oxygenation levels all night long. In the morning, her doctor explained that although she was not doing too well, there were things they could try and not to give up hope yet. She remained the same throughout that day. Her doctor told us to go to a hotel and get some rest around midnight that night. He said he would not hesitate to call if something went wrong. We got a call shortly after 5 a.m. Both my husband and I knew it could not be good news at that hour. We rushed over to the hospital and the doctor explained that Alex's kidneys and liver had stopped functioning and she was in renal failure. They said she still had about twelve to fourteen hours until the poison in her blood stream would stop her heart, so we had time to spend with her. I asked about finally holding her, and they said we could hold her with the machines on, or we could make a decision to turn off the life support and spend the last few minutes with her, holding her. She fought too hard for us, so the decision was not hard. We could no longer allow her to suffer for us, so we signed the DNR and had the life support removed. We sat and rocked her and held her for the first time as she was dying. On Sunday, May 25, 2003, our little angel passed away. We are so grateful for the time we had with her, and now she is finally free of pain.
Sincerely,
Alexandria's parents, Robert & Kimberly Job (Illinois)
Wednesday, July 22, 2015
July 22 - Dear Nicholas Sparks (Guest Blogger Jill Coon)
Dear Mr. Sparks,
At 28 weeks of my second pregnancy, I went for a routine sonogram to rule out placenta previa. My first sonogram at 20 weeks showed the placenta a bit low but baby was just fine. During this second sonogram the technician became very quiet and was focusing quite a bit of attention on one area. Her smile was gone and I could feel my heart in my throat. After talking to the radiologist and my OB we learned that the baby's heart was displaced to the right and there was a large mass in the left side of the chest. They told us this was most likely one of two possible defects. One was CDH and the other was CAML(cystic adenomatoid malformation of the lung). We were sent to a group of perinatal specialists two hours from our home.
Our lives were turned upside down in a matter of minutes. I was in shock. If it wasn't for my then one and a half year old son Travis, I don't know how I would have made it through the last ten weeks of my pregnancy. It was a rollercoaster ride. We went to the perinatal specialists once a week for level 2 sonograms. Each time they thought the diaphragm was intact and focused their thoughts on the baby having the condition called CAML. The prognosis wasn't good in either case. The good news was that his right lung seemed unaffected and he had no other obvious defects.
We planned to induce at 39 weeks since the hospital I was to deliver at was two hours away. This hospital was equipped with ECMO in case he needed it. We had met with the pediatric surgeons ahead of time and they were prepared for Troy's needs.
Of course Troy made up his own mind and I went into labor 3 days before we were to induce. The two hour drive to the hospital was the longest of my life. Troy was born that afternoon on 8/27/94 without any complications. He was breathing on his own! I will never forget the sweet sound of his cries. I was so afraid that I wouldn't hear them. They let me hold him very briefly. That was the most wonderful moment. I kissed his head and told him that I loved him. The nurse scooped him up quickly and took him into another room to assess him and start him on some oxygen. That's when I lost it. That first separation, and still not knowing much at all about his condition. I was a mess. I felt better later when they wheeled me into the NICU so I could see him. He looked very content although he was covered with tubes and wires. I wanted to hold him so badly, it hurt.
Later that evening his surgeon came to my room to tell us that they had confirmed that Troy had CDH. The mass in his chest was his intestines and the hole in his diaphragm was relatively small. He told us that Troy was stable and that they had scheduled surgery for the next day.
Amazingly, Troy was breathing on his own with some oxygen right up until the surgery. The surgery went well and took a few hours. We paced the halls and waited for my parents to arrive with our son Travis. I felt so much better when they got there and I was able to hug and kiss one of my children! It hurt so much not to be able to be close to Troy. Soon the surgeon came in and told us that the surgery went well and Troy remained stable. He also told us that they removed his appendix during the surgery. They said he had a small amount of left lung tissue which was good. It could expand.
They got him situated in the NICU, and there I stayed for the next two weeks. Leaving only to sleep (ha)! and eat. He was on the vent for only a few days. After a while it seemed to cause problems for him. He was having frequent "black attacks." They extubated him and he did well after that. They inserted a chest tube to help his lung expand. It was a slow process. He also had jaundice and needed to be under the lights for what seemed like forever. I was able to feed him after a week! I was pumping breast milk for him and I was able to give him a bottle. He seemed to love it! Troy made wonderful progress each day, and after only 2 weeks in the hospital, (must be some kind of record for a CDH baby)! we were able to bring him home!
His homecoming was filled with mixed emotions. I was thrilled to have him home with the family, but I was scared to death! I slept with the lights on and one eye open counting his respiration's! I was so worried that something would happen. It was hard to wean myself off of the monitors used at the hospital!
After 3 weeks at home, my worst fears came true. Troy began throwing up each feeding and crying very painful cries. I called his surgeon who told us to get an x-ray at our local hospital. It didn't show any major problems but to be on the safe side he told us to come down and stay the night while they ran some tests. After 24 hours in the hospital they found out that he had a bowel obstruction. He was rushed in for emergency surgery in the middle of the night. A six inch piece of bowel had been cut off by adhesions and had died inside of him. He was very sick. His whole body was toxic. They removed the piece of bowel and pumped his body with many antibiotics. He was critical. The doctors were very worried about him. They told me that he was as sick as anyone can get. We almost lost him. He was on many medications and back on the vent. His condition was much worse this time around. I stayed by him and got as close as I could to him in that little bed. I wanted to crawl right in their with him! Soon he was starting to show signs of improvement. He is such a strong little solider and he fought hard! He was on the vent much longer this time and the settings were up and down each day. Finally he was extubated and breathing on his own. He remained in the hospital another two weeks. We brought him home healthy again and we haven't looked back since! He has had one other surgery for an undescended testicle at age 2.
Today Troy is a happy and healthy 4 year old that loves to swim, ride his bike, snow ski, x country ski, and go for boat rides! He has had virtually no complications at all from the CDH. He does have a slight pectus deformity, but it is barely noticeable. We are so blessed to have such a healthy and wonderful little boy after such a hard start. I never let a day go by without telling myself that. It's hard to believe that this is the same little baby that was once so sick. I am only reminded by the many scars on his belly and the few on my heart. We thank god for what we have, and never take it for granted.
Sincerely,
Troy's mom, Jill Coon (California)
At 28 weeks of my second pregnancy, I went for a routine sonogram to rule out placenta previa. My first sonogram at 20 weeks showed the placenta a bit low but baby was just fine. During this second sonogram the technician became very quiet and was focusing quite a bit of attention on one area. Her smile was gone and I could feel my heart in my throat. After talking to the radiologist and my OB we learned that the baby's heart was displaced to the right and there was a large mass in the left side of the chest. They told us this was most likely one of two possible defects. One was CDH and the other was CAML(cystic adenomatoid malformation of the lung). We were sent to a group of perinatal specialists two hours from our home.
Our lives were turned upside down in a matter of minutes. I was in shock. If it wasn't for my then one and a half year old son Travis, I don't know how I would have made it through the last ten weeks of my pregnancy. It was a rollercoaster ride. We went to the perinatal specialists once a week for level 2 sonograms. Each time they thought the diaphragm was intact and focused their thoughts on the baby having the condition called CAML. The prognosis wasn't good in either case. The good news was that his right lung seemed unaffected and he had no other obvious defects.
We planned to induce at 39 weeks since the hospital I was to deliver at was two hours away. This hospital was equipped with ECMO in case he needed it. We had met with the pediatric surgeons ahead of time and they were prepared for Troy's needs.
Of course Troy made up his own mind and I went into labor 3 days before we were to induce. The two hour drive to the hospital was the longest of my life. Troy was born that afternoon on 8/27/94 without any complications. He was breathing on his own! I will never forget the sweet sound of his cries. I was so afraid that I wouldn't hear them. They let me hold him very briefly. That was the most wonderful moment. I kissed his head and told him that I loved him. The nurse scooped him up quickly and took him into another room to assess him and start him on some oxygen. That's when I lost it. That first separation, and still not knowing much at all about his condition. I was a mess. I felt better later when they wheeled me into the NICU so I could see him. He looked very content although he was covered with tubes and wires. I wanted to hold him so badly, it hurt.
Later that evening his surgeon came to my room to tell us that they had confirmed that Troy had CDH. The mass in his chest was his intestines and the hole in his diaphragm was relatively small. He told us that Troy was stable and that they had scheduled surgery for the next day.
Amazingly, Troy was breathing on his own with some oxygen right up until the surgery. The surgery went well and took a few hours. We paced the halls and waited for my parents to arrive with our son Travis. I felt so much better when they got there and I was able to hug and kiss one of my children! It hurt so much not to be able to be close to Troy. Soon the surgeon came in and told us that the surgery went well and Troy remained stable. He also told us that they removed his appendix during the surgery. They said he had a small amount of left lung tissue which was good. It could expand.
They got him situated in the NICU, and there I stayed for the next two weeks. Leaving only to sleep (ha)! and eat. He was on the vent for only a few days. After a while it seemed to cause problems for him. He was having frequent "black attacks." They extubated him and he did well after that. They inserted a chest tube to help his lung expand. It was a slow process. He also had jaundice and needed to be under the lights for what seemed like forever. I was able to feed him after a week! I was pumping breast milk for him and I was able to give him a bottle. He seemed to love it! Troy made wonderful progress each day, and after only 2 weeks in the hospital, (must be some kind of record for a CDH baby)! we were able to bring him home!
His homecoming was filled with mixed emotions. I was thrilled to have him home with the family, but I was scared to death! I slept with the lights on and one eye open counting his respiration's! I was so worried that something would happen. It was hard to wean myself off of the monitors used at the hospital!
After 3 weeks at home, my worst fears came true. Troy began throwing up each feeding and crying very painful cries. I called his surgeon who told us to get an x-ray at our local hospital. It didn't show any major problems but to be on the safe side he told us to come down and stay the night while they ran some tests. After 24 hours in the hospital they found out that he had a bowel obstruction. He was rushed in for emergency surgery in the middle of the night. A six inch piece of bowel had been cut off by adhesions and had died inside of him. He was very sick. His whole body was toxic. They removed the piece of bowel and pumped his body with many antibiotics. He was critical. The doctors were very worried about him. They told me that he was as sick as anyone can get. We almost lost him. He was on many medications and back on the vent. His condition was much worse this time around. I stayed by him and got as close as I could to him in that little bed. I wanted to crawl right in their with him! Soon he was starting to show signs of improvement. He is such a strong little solider and he fought hard! He was on the vent much longer this time and the settings were up and down each day. Finally he was extubated and breathing on his own. He remained in the hospital another two weeks. We brought him home healthy again and we haven't looked back since! He has had one other surgery for an undescended testicle at age 2.
Today Troy is a happy and healthy 4 year old that loves to swim, ride his bike, snow ski, x country ski, and go for boat rides! He has had virtually no complications at all from the CDH. He does have a slight pectus deformity, but it is barely noticeable. We are so blessed to have such a healthy and wonderful little boy after such a hard start. I never let a day go by without telling myself that. It's hard to believe that this is the same little baby that was once so sick. I am only reminded by the many scars on his belly and the few on my heart. We thank god for what we have, and never take it for granted.
Sincerely,
Troy's mom, Jill Coon (California)
Tuesday, July 21, 2015
July 21 - Dear Nicholas Sparks (Guest Blogger Jessie F Jennings)
Dear Mr. Sparks,
To let you know a little bit about baby Greg's history, here is how it began. When I was around five months pregnant, I begged my doctor for an ultrasound, not that I thought anything was wrong, but just to make sure the baby was okay. During the first ultrasound the defect was found. A large hole on the left side of the diaphragm. This was a total shock to me especially since I had a healthy three year old son. After that I went from doctor to doctor--had lots of ultrasounds--just to have the same answer from all of them, babies with a defect this large found early in pregnancy usually do not survive.
I was given alternatives such as abortion, where and who would perform one at this stage of pregnancy. I was also asked, "How far do you want us to go to save the baby?"
I had an amnio done which was good--no brain damage or etc. I was told my son would probably die at birth since he wouldn't have much lung tissue formed. Boy! To everyone's surprise, he was born pink and he cried. They took him straight from me to prepare him for surgery. And when I questioned his neonatologist if he would survive, he answered, "Never under estimate a baby." My full trust was in him from then on, he was the only one who had given me hope.
Surgery was done hours after his birth and even though he was oxygen dependent, NG-tube fed, and on various medications, he did well.
A few times I took him to Milwaukee Childrens Hospital to lung specialists. At age one on his birthday, Greg began requiring oxygen again and had developed pneumonia in the right lower lobe of his good lung.
The local hospital insisted on treating him instead of transporting him to the hospital where he was born (only 45 minutes away). When he had been there five days they transported him but it was too late. Baby Greg was put on a ribroviviar which he should have been on much sooner. He went into code three times.
I had a lot of anger toward our local hospital and the doctor and am still dealing with the grief.
Our neonatologist, Dr. Costakas, who dealt with us from the beginning, is an excellent doctor. He wrote a couple of articles on our son and had them published in a perinatology magazine.
I did allow an autopsy to be performed and Dr. Costakas learned a lot about his lungs and etc. A little note: we were always so worried about his patch breaking again but it never did. It even survived CPR on two occasions.
Well, I guess I've mentioned most of the stuff that went on with our son. But I really wanted to write and let you know that you and your doctors are welcome to the results of the autopsy. It may shed some knowledge about lung growth and etc.
Sincerely,
Gregory's mom, Jessie F Jennings (Wisconsin)
To let you know a little bit about baby Greg's history, here is how it began. When I was around five months pregnant, I begged my doctor for an ultrasound, not that I thought anything was wrong, but just to make sure the baby was okay. During the first ultrasound the defect was found. A large hole on the left side of the diaphragm. This was a total shock to me especially since I had a healthy three year old son. After that I went from doctor to doctor--had lots of ultrasounds--just to have the same answer from all of them, babies with a defect this large found early in pregnancy usually do not survive.
I was given alternatives such as abortion, where and who would perform one at this stage of pregnancy. I was also asked, "How far do you want us to go to save the baby?"
I had an amnio done which was good--no brain damage or etc. I was told my son would probably die at birth since he wouldn't have much lung tissue formed. Boy! To everyone's surprise, he was born pink and he cried. They took him straight from me to prepare him for surgery. And when I questioned his neonatologist if he would survive, he answered, "Never under estimate a baby." My full trust was in him from then on, he was the only one who had given me hope.
Surgery was done hours after his birth and even though he was oxygen dependent, NG-tube fed, and on various medications, he did well.
A few times I took him to Milwaukee Childrens Hospital to lung specialists. At age one on his birthday, Greg began requiring oxygen again and had developed pneumonia in the right lower lobe of his good lung.
The local hospital insisted on treating him instead of transporting him to the hospital where he was born (only 45 minutes away). When he had been there five days they transported him but it was too late. Baby Greg was put on a ribroviviar which he should have been on much sooner. He went into code three times.
I had a lot of anger toward our local hospital and the doctor and am still dealing with the grief.
Our neonatologist, Dr. Costakas, who dealt with us from the beginning, is an excellent doctor. He wrote a couple of articles on our son and had them published in a perinatology magazine.
I did allow an autopsy to be performed and Dr. Costakas learned a lot about his lungs and etc. A little note: we were always so worried about his patch breaking again but it never did. It even survived CPR on two occasions.
Well, I guess I've mentioned most of the stuff that went on with our son. But I really wanted to write and let you know that you and your doctors are welcome to the results of the autopsy. It may shed some knowledge about lung growth and etc.
Sincerely,
Gregory's mom, Jessie F Jennings (Wisconsin)
Monday, July 20, 2015
July 20 - Dear Nicholas Sparks (Guest Blogger Kathy Compa)
Dear Mr. Sparks,
Our son was born on June 9, 1972, after a very routine pregnancy. This was before ultrasound was used, so we were not aware that anything was wrong with our son. After a long labor, Peter was born early in the morning of June 9, 1972. There was activity in the delivery room, but since Peter was my fourth baby, I realized there was always some hustle after the birth. They showed me the baby and quickly took him away without a word. After a short time, I was taken to my room, and my husband came in with my OB/GYN, Dr. David Landers. He had started to speak to my husband in the waiting room but then brought him in to me where he was joined by our baby's pediatrician, Dr. Vincent McAuliffe. They also had a pediatric surgeon, Dr. Anthony Barbara, from Hackensak Hospital. At this point, Dr. Barbara proceeded to tell us that Peter had been born with a diaphragmatic hernia and that he needed immediate surgery to save his life. I remember saying to him to do his best. I truly don't think I realized the severity of this problem. I was to find out later that Dr. Landers had noticed the baby had difficulty breathing when he was going to perform the circumcision. They inserted a tube to help Peter breath until they could perform the surgery. Luckily for us, Dr. Barbara was available and performed the surgery when Peter was four hours old.
We have been truly blessed, and I have often called Peter our miracle baby. We were told after the fact that his chances were about one in ten. But he came through the surgery beautifully. After a couple of days, he kicked one of the tubes out, and they told us that if he was that strong, they would not replace it. He went home after 11 days without any complications at all. Over that year, he had pneumonia four times and was hospitalized each time. He was also tested for cystic fibrosis twice, but each time that was negative. We were sent to Columbia Presbyterian Hospital in New York for further testing and were told that one side of his diaphragm was smaller than the other. But other than that, he was fine. At 11 months, we were told that Peter needed another surgery to make a permanent correction of the hole. The first surgery was to save his life and now a piece of material called cyloplast would be used to repair the hole permanently. That surgery also went well, and on Mother's Day of that year, I took him home. He has been fine ever since.
He was a little small for his size initially, but he definitely caught up over the years. He has played soccer since he was eight years old, Little League, and even wrestled for a short time. When he needed a physical for the wrestling, we had to return to the surgeon and have x-rays taken. After he looked at them, he said no one would ever be able to tell that Peter had ever had a problem.
I am so thankful for my Peter. He could have had so many other complications that I never was aware of until now. I guess very little was known about this condition almost 29 years ago. I do know that I have a living miracle in my life, and I thank God every day for him. I had another son four years later, and he was fine. And my three daughters born before Peter were also perfect.
Sincerely,
Peter's mom, Kathy Compa (New Jersey)
Our son was born on June 9, 1972, after a very routine pregnancy. This was before ultrasound was used, so we were not aware that anything was wrong with our son. After a long labor, Peter was born early in the morning of June 9, 1972. There was activity in the delivery room, but since Peter was my fourth baby, I realized there was always some hustle after the birth. They showed me the baby and quickly took him away without a word. After a short time, I was taken to my room, and my husband came in with my OB/GYN, Dr. David Landers. He had started to speak to my husband in the waiting room but then brought him in to me where he was joined by our baby's pediatrician, Dr. Vincent McAuliffe. They also had a pediatric surgeon, Dr. Anthony Barbara, from Hackensak Hospital. At this point, Dr. Barbara proceeded to tell us that Peter had been born with a diaphragmatic hernia and that he needed immediate surgery to save his life. I remember saying to him to do his best. I truly don't think I realized the severity of this problem. I was to find out later that Dr. Landers had noticed the baby had difficulty breathing when he was going to perform the circumcision. They inserted a tube to help Peter breath until they could perform the surgery. Luckily for us, Dr. Barbara was available and performed the surgery when Peter was four hours old.
We have been truly blessed, and I have often called Peter our miracle baby. We were told after the fact that his chances were about one in ten. But he came through the surgery beautifully. After a couple of days, he kicked one of the tubes out, and they told us that if he was that strong, they would not replace it. He went home after 11 days without any complications at all. Over that year, he had pneumonia four times and was hospitalized each time. He was also tested for cystic fibrosis twice, but each time that was negative. We were sent to Columbia Presbyterian Hospital in New York for further testing and were told that one side of his diaphragm was smaller than the other. But other than that, he was fine. At 11 months, we were told that Peter needed another surgery to make a permanent correction of the hole. The first surgery was to save his life and now a piece of material called cyloplast would be used to repair the hole permanently. That surgery also went well, and on Mother's Day of that year, I took him home. He has been fine ever since.
He was a little small for his size initially, but he definitely caught up over the years. He has played soccer since he was eight years old, Little League, and even wrestled for a short time. When he needed a physical for the wrestling, we had to return to the surgeon and have x-rays taken. After he looked at them, he said no one would ever be able to tell that Peter had ever had a problem.
I am so thankful for my Peter. He could have had so many other complications that I never was aware of until now. I guess very little was known about this condition almost 29 years ago. I do know that I have a living miracle in my life, and I thank God every day for him. I had another son four years later, and he was fine. And my three daughters born before Peter were also perfect.
Sincerely,
Peter's mom, Kathy Compa (New Jersey)
Sunday, July 19, 2015
July 19 - Dear Nicholas Sparks (Guest Blogger Jillian Thomas)
Dear Mr. Sparks,
Hi my name is Jillian, and I had a son September 28, 2004 who was
diagnosed with a right-sided diaphragmatic hernia. My boyfriend Derek
and I tried to have a baby for about four years and never got pregnant.
In 2000 I had a miscarriage so we took a break for awhile. Then in
February 2004 we found out we were having our first child. We were so
happy.
At around 18 weeks I went for my first ultrasound. I was so excited to see our little baby inside of me. I was actually having a baby. I couldn't be happier. Then about a week after that I went into see my doctor who said she wanted to send me for another ultrasound. It looked like the baby had a lump in his chest. About a week after I went for the ultrasound the doctor said our baby had CCam which is a lump in the chest and said if it didn't get larger we have nothing to worry about.
They kept a really good eye on me. I was going for ultrasounds about once a week. Then at 32 weeks I went in for another ultrasound. They then said that they wanted to send me for an MRI right after that appointment. They sent me upstairs at this point. I was so scared that words can't even say. Afterwards the doctor saw me right away with the results. My baby had a right-sided diaphragmatic hernia. I didn't know what that was so I was really concerned. The doctor told me about a diaphragmatic hernia, and I almost dropped. I couldn't believe this was happening to us. The doctor then told me our son had a 50% chance of living when he was born. I couldn't believe it, and since it was on the right side it caused his liver and bowels to go into his chest and crush his lungs.
I was induced on September 28, 2005 and went through 17 hours of labour, and out came our son who was 7 lbs 10 oz. As soon as he came out he was taken away. He didn't cry, and I was so worried. I didn't even get to see my son for five hours after they brought me a picture off him. They said they would come get me when he was stable enough for me to go down to the NICU. I had him at 2:10 a.m. and was finally able to go see him at 6:30 a.m., and there was my little boy just laying there and hooked up to all those tubes. I wished I was lying there and it was me going through all that. Why did God have to do this to such a helpless little boy.
The doctor told me that night that there was a 20% chance of him living through the night. I couldn't believe that it was really happening. I stayed with him all night. The next morning he was doing much better they did X-rays, and you could actually see his lungs in the X-ray. The doctors were pleased. When he first came out they told me his lungs were as if I was 18 weeks pregnant. Then we took it day by day.
One week had gone by, and little Derek was doing so good. The doctors said they couldn't ask for anything more. His oxygen levels were down from 100% to 42%. He was ready for surgery.
That night we decided to go home to rest a little. We had been at the hospital for eight days, and since he was doing so good we thought we could come home for a bit. We weren't in the door for more then three hours and the hospital called. "We need you to come back to the NICU. Little Derek has turned for the worst."
I hung up the phone and Derek and I were on our way. When we arrived little Derek's oxygen was back up to 100% and his stats were down. "What happened?" I thought,"What was going on?" That next week was the worst of my life. He had dropped in stats and wasn't coming back up. Four days after that my son Derek was still unable to go to surgery.
All I wanted to do was hold my son and tell him it was going to be okay, but I knew it wasn't. I never even got to hold my son, and then the doctors wanted to have a meeting. In this meeting they told us there was nothing more they could do for our son and that he deserves to be held by his mother before he dies so that when we made the decision to take him off the life support and let him go, it would be in my arms. It was the worst thing I ever had to do- to look into the eyes of my first child dying and there was nothing I could do about it. He passed away at two weeks old, and to this day I pray for all the other mothers out there that have to go through hard times like this.
Thanks for reading my story and taking the time out.
Sincerely,
Dereks mom, Jillian Thomas (Great Britain)
At around 18 weeks I went for my first ultrasound. I was so excited to see our little baby inside of me. I was actually having a baby. I couldn't be happier. Then about a week after that I went into see my doctor who said she wanted to send me for another ultrasound. It looked like the baby had a lump in his chest. About a week after I went for the ultrasound the doctor said our baby had CCam which is a lump in the chest and said if it didn't get larger we have nothing to worry about.
They kept a really good eye on me. I was going for ultrasounds about once a week. Then at 32 weeks I went in for another ultrasound. They then said that they wanted to send me for an MRI right after that appointment. They sent me upstairs at this point. I was so scared that words can't even say. Afterwards the doctor saw me right away with the results. My baby had a right-sided diaphragmatic hernia. I didn't know what that was so I was really concerned. The doctor told me about a diaphragmatic hernia, and I almost dropped. I couldn't believe this was happening to us. The doctor then told me our son had a 50% chance of living when he was born. I couldn't believe it, and since it was on the right side it caused his liver and bowels to go into his chest and crush his lungs.
I was induced on September 28, 2005 and went through 17 hours of labour, and out came our son who was 7 lbs 10 oz. As soon as he came out he was taken away. He didn't cry, and I was so worried. I didn't even get to see my son for five hours after they brought me a picture off him. They said they would come get me when he was stable enough for me to go down to the NICU. I had him at 2:10 a.m. and was finally able to go see him at 6:30 a.m., and there was my little boy just laying there and hooked up to all those tubes. I wished I was lying there and it was me going through all that. Why did God have to do this to such a helpless little boy.
The doctor told me that night that there was a 20% chance of him living through the night. I couldn't believe that it was really happening. I stayed with him all night. The next morning he was doing much better they did X-rays, and you could actually see his lungs in the X-ray. The doctors were pleased. When he first came out they told me his lungs were as if I was 18 weeks pregnant. Then we took it day by day.
One week had gone by, and little Derek was doing so good. The doctors said they couldn't ask for anything more. His oxygen levels were down from 100% to 42%. He was ready for surgery.
That night we decided to go home to rest a little. We had been at the hospital for eight days, and since he was doing so good we thought we could come home for a bit. We weren't in the door for more then three hours and the hospital called. "We need you to come back to the NICU. Little Derek has turned for the worst."
I hung up the phone and Derek and I were on our way. When we arrived little Derek's oxygen was back up to 100% and his stats were down. "What happened?" I thought,"What was going on?" That next week was the worst of my life. He had dropped in stats and wasn't coming back up. Four days after that my son Derek was still unable to go to surgery.
All I wanted to do was hold my son and tell him it was going to be okay, but I knew it wasn't. I never even got to hold my son, and then the doctors wanted to have a meeting. In this meeting they told us there was nothing more they could do for our son and that he deserves to be held by his mother before he dies so that when we made the decision to take him off the life support and let him go, it would be in my arms. It was the worst thing I ever had to do- to look into the eyes of my first child dying and there was nothing I could do about it. He passed away at two weeks old, and to this day I pray for all the other mothers out there that have to go through hard times like this.
Thanks for reading my story and taking the time out.
Sincerely,
Dereks mom, Jillian Thomas (Great Britain)
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