Saturday, October 31, 2015

October 31 - Dear Nicholas Sparks (Guest Blogger Amy Rademaker)

Dear Mr. Sparks,

It is hard to know where to begin, so I will start at the beginning. Pete and I were married September 23, 1995. Shortly after our one year anniversary we decided to start a family. We conceived in February, with a due date of Nov. 6, 1997. The pregnancy started out fine. We had our first doctor visit with the usual exam.

At 6 weeks along, I became very sick. We made a trip to the emergency room late one night around midnight. I was diagnosed with hyperemesis. Hyperemesis is severe uncontrollable vomiting to the point of dehydration. I was given fluids, some Compazine for the vomiting, and sent home. We returned to the hospital on April 10, and stayed the whole day. They gave me more fluids, Phenegan, a different kind of compazine, and prescribed B vitamins. I was put on a strict diet, and had to teach my body to tolerate food again. I slowly recovered, and began to feel better.

We had our first ultrasound on April 25, at 12 weeks to check the size of the baby, because I had been so sick. The ultrasound showed a placenta previa. This is when the placenta is over or partially covering the opening to the cervix. The medical reports show that the heart rate was 171, that the stomach and bladder were seen, and that the abdominal wall was intact. The pregnancy progressed normally. We had our second ultrasound on August 13, at 28 weeks to see if the placenta previa was still there. It had cleared up, and moved out of the way. The medical reports show that the heart rate was 139, that the kidney, bladder, and stomach were seen, and that the abdominal wall was intact. At this time they estimated the due date to be Nov. 18, due to the baby's small size. (The small size of the baby was never mentioned to us.) I continued to go by the Nov. 6 due date, as I had kept good records, and that was 40 weeks.

About 3 weeks before my due date, I began having severe Braxton Hick's contractions. They were high in my back between the shoulder blades. The only relief I could get was if I walked for 2-3 hours in a local park they would subside. The contractions would last from a few hours to several days.

I went into labor early in the morning on Friday, Nov. 7. Pete went to work, just long enough to pick up his paycheck, and call me. I asked him to return home. We timed contractions, and waited at home until around 2pm, when we decided to go to the hospital.

I was examined and it was determined that I was 4 cm dilated. They were keeping us, so we called our parents. I labored for several hours. I was on monitors most of the time, with the exception of walking the halls, and a whirlpool bath, which was wonderful. I lost my mucus plug after the nurse examined me. The doctor broke my water a short time later. They inserted and internal monitor into the baby's scalp. Labor continued to progress. At one point, the alarms on the monitors sounded, and everyone came running. The heart rate dropped to 80. They turned me on my side, and then my other side. They put an oxygen mask on me, and started an IV of saline. The heart rate then went back up, and we continued with labor. The doctor administered Lidocain and performed a 4th degree episiotomy. I received a small dose of Nubain for pain. Another doctor was called in to help turn the baby's head down. After a few more minutes of pushing, Jonathan Luke was born at 7:42pm, weighing 4 lbs, 15.7ounces, and 18 1/2 inches long. His hair was brown, and slightly curly.

They laid him on my belly, he shot out a stream of urine at Pete before he cut the cord. He made only a few small attempts to cry, and he didn't open his eyes. I didn't touch him. I said out loud that he should be crying more, and screamed at the nurse to take him, take him!

The nurse took him, and they began to work on him. He had an apgar score of 2. They called in a pediatrician, a neonatal nurse, and another doctor. They immediately began to bag him. They tried to intubate him and had difficulty, but finally succeeded. They administered oxygen the whole time. The other doctor told me he opened his eyes, but I couldn't see. His apgar improved to 3. They continued to bag him, and ordered a chest x-ray. I sent Pete out to let the family know that the baby was a boy, and that he was having trouble breathing. While they waited for a radiologist, his heart rate fell, and they started CPR. They gave him epi to stimulate the heart. They decided to move him to the nursery to work on him further. His apgar was 1.

My doctor and Pete were the only ones who stayed with me. They gave me some pitocin to shrink the uterus. Meanwhile in the nursery, they continued to work on him. They placed a UVC line in him, (IV through the umbilical cord) and administered multiple doses of Epi, Bicarbonate, Glucose, Atropine, and Plasmanate with no response. They put him on a ventilator. His heart rate dropped and then declined to 0, and they stopped all efforts. He died at 8:42pm, and hour after he was born. They were never able to stabilize him to do a chest x-ray.

The doctors and nurses all came back into the room, and they called in our families to tell us he was gone. I thought that they had just come back into the room to tell us they were going to transport him to the neonatal unit at Blodgett. I was in total shock when the pediatrician said he was gone.

We were able to hold him for awhile, take pictures, and make decisions about funeral arrangements etc. We decided to have an autopsy performed to find out what happened. The autopsy was performed Saturday, the next day at 2pm, about the same time I left the hospital and went home. My doctor called later that day with the results.

The autopsy and chest x-ray showed that there was a defect in the right side of the diaphragm, Bockdalek type, with the small bowel, portion of the colon, right kidney, and an ectopic lobe of the liver herniated up into the lung cavity. The right lung was hypoplastic. The heart also had a interarterial septal defect of the foramen ovale type. Basically, the diaphragm had a hole and the organs moved up into the lung cavity and crowded out the right lung from forming properly.

The funeral and burial was on Monday the 10th. This is the day my milk came in, and everyone wanted to hug me.

We do not know why God allowed this to happen. We do know that he has a plan and purpose far beyond what we can understand. We know that Jonathan is safe in the arms of Jesus and that we will see him again in Heaven!

Jonathan's first birthday would have been a little over a month ago. We remembered the day quietly with a trip to the cemetery. We purchased a gliding rocking chair and donated it to our church nursery. We both agree that we worried more about how bad the day was going to be, than how bad it actually was.

Jonathan's mom, Amy Rademaker (Michigan)

Friday, October 30, 2015

October 30 - Dear Nicholas Sparks (Guest Blogger Denise Haas)

Dear Mr. Sparks,

My name is Denise. My daughter Aimee just turned sixteen years old this past April. The day after Mother's Day this year, she started to complain of severe abdominal pain. We took her to the doctors, who became suspicious when they heard no bowel sounds and didn't hear her breathing on the left side.

They ran many tests that night, the most important a chest x-ray, where they could see only about 30% of her left lung. They ordered a CT Scan and that's when they saw that her large and small intestines, her bowels, and her spleen were in her left chest cavity under her lung.

The following morning a surgeon, Dr. Katlic, looked over her tests and rushed her into surgery. He was worried about blood supply being cut off to her organs. After two hours in surgery, Dr. Katlic came out and said she had done wonderfully. He made only one incision from her diaphragm bone to her belly button. He said all her organs were fine and were back in her abdomen. He did say there was barely enough room in there for them to fit. Until this point we had been under the impression that this was caused by a trauma, but we didn't have a trauma. During surgery, Dr Katlic found out differently. Since her left lung never fully matured, he is certain that she was born this way.

She spent two and a half days in ICU, with wonderful care and another seven days in the hospital. She had a very hard time eating and drinking and lost 12 lbs. But she has been home now two weeks and is doing great-- eating, walking around, feeling fine. She had a chest x-ray two days ago. It looks as though her left lung has expanded a little more. Everyone seemed so amazed by her surgery, her recovery and we didn't know why until I read your site. I am so amazed that she lived this way for 16 years. I had never heard of CDH until a few weeks ago, and I can't believe how much worse this could have been.

Aimee's mom, Denise Haas (Pennsylvania)

Thursday, October 29, 2015

October 29 - Dear Nicholas Sparks (Guest Blogger Marlene Pytyck)

Dear Mr. Sparks,

My husband and I were married about 1 ½ years when we found out we were pregnant. We were very exited! When I went in for my 18-week ultrasound, I had no thoughts of problems whatsoever. What an incredible shock it was when the technicians brought in their supervisor, and he said to me, "I would like to tell you everything is okay, but I'm afraid I can't." He asked me to go speak to my doctor. I was alone since my husband was out of town with work. I went to my doctor in a state of shock, and so many things went through my head. I couldn't believe they saw something wrong. how bad could it be? I guess I was incredibly naive since I didn't think they ever found things wrong in an ultrasound but just confirmed there was a baby in there and check for twins or stuff like that.

When the doctor told me that our baby had a diaphragmatic hernia, she didn't beat around the bush with telling me how serious it was. I just couldn't believe what I was hearing. Then the doctor told me we should run other tests as soon as possible since chromosome problems and heart defects are very often associated with this condition. I didn't even really know what "chromosome" problems meant, but she made it sound very bad and the outlook for our precious baby very grim. What a nightmare! I called my mom to come that afternoon to be with me, and they did an amnio that same afternoon.

Then came the waiting, amnio results, echocardiogram, ultrasounds. We found out we were expecting a boy even my husband could tell from the ultrasound. Ben wasn't shy! Somewhere in this "hell" we were told something I had never heard of before. When a baby is diagnosed with something so serious the parents are given the option of terminating. We chose to continue the pregnancy and give our baby boy every chance we could give him. I can't describe how happy I am that we made that decision. We named our precious son Benjamin Michael. He was the perfect baby while I carried him! Our test results showed no other associated problems, but the doctor still told us that even isolated cases of CDH were extremely serious and not to get our hopes up.

My husband did tons of scientific research about this condition and showed me the CHERUBS website for my support. We learned as much as we could about Ben's condition. I must admit it was very scary, but it helped to know we were not alone. Meanwhile, Ben was such an active and happy little guy. He loved kicking up a storm in the evenings, and I never had any polyhydramnios or any other problems. It was very difficult not to get our hopes up when at every ultrasound Benjamin got perfect scores (except one where he just wanted to give us a little scare but everything was fine!) He even did his practice breathing and everything! It was a very difficult time, especially with people asking, "Are you excited? Have you finished the baby room?"-- all well-meaning questions, but they cut like a knife. I couldn't bring myself to make a baby room, but I had friends, cousins, and a sister who had stuff ready for us at a moment's notice if we could take our Ben home.

Benjamin was born on October 25, 2000, by an emergency C-section because I had an abruption during labour (nothing to do with Ben's condition, I should add). My husband Kevin got to see him come out, and he was a little purple but kicking like crazy! They immediately intubated him and gave my husband a "thumbs up" that they had him breathing! Then began a week that is still hard for me to think about. Benjamin weighed 7 lbs 7 ounces and was such a beautiful baby! He looked a lot like his daddy, but I could see me in him, too! He looked so strong and healthy, but it wasn't long before he had to go to the oscillator and then to nitric oxide. (It was later determined Ben had what they diagnosed as an "almost complete agenesis of the left hemi-diaphragm"). In the back of my mind I guess I'd hoped we could be one of the lucky ones and just need the respirator.

It was an extremely difficult week, and a week to the day he was born, the doctors called us in at 5:30 in the morning and Benjamin's condition had gone dangerously downhill, and his blood gases were so low that they thought it was time to withdraw life support. (This had already happened a few times earlier, but we always had a few doctors say that maybe it wasn't quite time yet, so we would hang on a little longer). We did have a few glimpses of hope during that week, but Ben was very sick and never even close to stable enough to think about moving him for surgery. We had excellent care for Ben and for myself. Ben had a full time nurse to himself every hour of every day, but his lungs just weren't strong enough to sustain his precious life.

Only those people who have gone through something like this can understand this indescribable experience. Benjamin's Mommy & Daddy & Oma (Grandma) were right there with him when he died and his Opa (Grandpa) and Auntie Krista very shortly after to say goodbye. I still can't believe we survived this without dying ourselves. Despite the pain, I have never regretted our decision to give our son the nine wonderful (although often bittersweet) months he had in my tummy. Although his week here on earth probably wasn’t that great for him, I am having more peace now with the fact that I'm sure he now understands that we put him through that only because we wanted him so badly to stay with us. I don't totally understand Heaven, but I know he's totally happy and that often brings me peace although our hearts have been broken. We will never forget our most precious son and all that his short life taught us. He would have been 10 months old now and there is still a lot of pain we live with every day.

Benjamin's mom, Marlene Pytyck (Canada)

Wednesday, October 28, 2015

October 28 - Dear Nicholas Sparks (Guest Blogger Susan S. Grubb)

Dear Mr. Sparks,

My son, Tyler, was born three years ago on January 7, 1994. We were totally unprepared for the dramatic experience that came after his birth. My husband, Jim, and I had been married almost seven years. We waited to start having a family until we were in a more stable financial situation. I also required surgery to correct a severe TMJ problem which involved four and a half years of wearing braces before the surgery could be done. I had my surgery January 5, 1993. By the end of April, 93 we suspected I was pregnant. When the test confirmed our suspicions we were so excited.

I had an excellent pregnancy. No morning sickness. I hated those vitamins and iron, but I took them without fail. If I remember correctly, I battled keeping my hemoglobin level up and towards the end of my term. I had to take two iron pills a day. I had my AFP done and an ultrasound at 16 weeks to establish fetal age and size. They tested me for gestational diabetes because I complained of being thirsty a lot and urinating frequently. However, the test was negative.

On Monday morning I went for my weekly checkup. Dr. Lanford (my OB) said I was going to have this baby by Friday, whether I pushed him out or he pulled him out. He sent me for an x-ray called pelvimetry to see if I was big enough to deliver Tyler (I am only 4'1" and weighed 115 at full term). Dr. Lanford decided that I would have Tyler by C-Section on Friday the 7th at 12:30. Thursday night at 1am my water broke and I went into labor. I did not progress very much so I had to wait until my scheduled time.

I can remember Dr. Lanford telling me I would feel a little tug and then the baby would be here. He held him up for Jim and me to see, but I don't remember that. You see, Tyler turned blue and went into respiratory distress as soon as the umbilical cord was cut. At that point the anesthesiologist put me under so they could attend to helping Tyler. Thank goodness Dr. Sami El-Hassani (neonatologist and head of obstetrics) was in the hospital that day. He came to take care of Tyler so Dr. Lanford could close me up. My husband has a hard time remembering all of this too. I recall waking up in recovery and seeing my mom, mother in law and Jim just staring at me. I could not remember if I had a boy or a girl, so I asked. No one answered. I immediately went hysterical because I thought my baby was dead and I had not even gotten to see or hold him.

They tried to explain what was wrong but I just could not listen or understand what they were telling me. Later when I was back in my room, I kept asking to see him. Everyone kept telling me they were trying to stabilize him for transport. They were going to fly him by helicopter to Charlotte. Finally the flight nurse, Terri Cronk, came in to talk to me. She told me and my family that Tyler would probably not make it up to Charlotte. She said she had to prepare us for this possibility. They brought Tyler in and let down the side of the isolette. I touched his little hand and off they went.

My husband and some of his family went to Charlotte. I had to stay in Spartanburg, SC. They would not release me because my blood pressure was dangerously high (I wonder why??!! ). The doctors were able to postpone Tyler's surgery to Saturday morning because some of his organs began to migrate back through the hole. Tyler had his surgery. Jim and the doctors talked to me by phone. They said he was doing well, but would be in critical condition for the next 7 to 14 days. Tyler had a left-sided Morgagni CDH. His liver, small bowel, transverse and descending colon, spleen and pancreas were in the chest. The doctors noted on Tyler's post-op report that his left lung looked healthy, salmon colored and about 50% of the size it should be. They also noted, as expected, his bowels had a slight degree of malrotation. I was released from the hospital on Tuesday and Jim came down from Charlotte to take me home. I went home without my baby which was devastating. For the next four days, my mother did her best to take care of me. All I could do was cry and want my baby. I never slept and I was constantly doing something in Tyler's nursery. The doctors call this "nesting," sort of like a mother bird. On Friday I went back to Dr. Lanford to have my stitches removed and he released me to go to Charlotte.

I will never forget seeing Tyler there for the first time. He was hooked up to all those machines, wires going everywhere and the huge bandage on his chest. The nurses explained all the machines: the ventilator, heart monitor, the chest tube, NG tube and etc. It seems like all I could do was cry. Thank goodness Jim was so strong. He kept his faith and helped me keep mine. But so much of the time the shock was overwhelming. The doctors and nurses told us Tyler was doing great. When he was about two to two and a half weeks, they decided to try him off the ventilator. He struggled for two hours before they said that's enough and put him back on the vent. We would have to wait several more days and try again. The next time he stayed off for two days, but he began to struggle again so they put him back on once more. They did a procedure called broncoscopy and found he had a floppy trachea (tracheaomalacia.) He was given steroids for two days to help strengthen his lungs and trachea. He was extubated for good, however they put him on nasal cannula. It was at this time we tried bottle feeds, but he developed an ileus (bowel obstruction) and we had to stop until the problem was solved (about one week). Finally we could give Tyler bottles. This is a time I will always cherish and remember because I finally felt like a real mommy when I got to hold Tyler and feed him. After three weeks, the doctors felt Tyler was stable and improving enough to transport back to Mary Black Hospital in Spartanburg, SC.

Tyler remained at Mary Black for one week. He was weaned off the oxygen and continued to feed well. We came home with an apnea monitor and oxygen for blow-by during feeds. The next five months were very scary. I returned to work after eight weeks of maternity leave. My mother took care of Tyler. I believe this was the only was I could have gone back so fast. He was hospitalized three more times for a week each time in April, May and June of 94 for poor feeding and pneumonia by aspiration. It was his last hospitalization at Greenville Hospital when we met Dr. Jane Gwinn. Drs. Gwinn and Helgamo (a third year resident who treated Tyler in ER) were so attentive to his condition. They diagnosed him with Reactive Airway Disease and gastrointestinal reflux. So when he was discharged he came home on oxygen 24 hours a day; he got nebulized albuterol/intal four times a day for Reactive Airway Disease and Reglan for the reflux. We also brought home a sats monitor so we could check his sats while he fed, played and while he was off the oxygen, off the Reglan, and off the nebulized breathing treatments.

With Tyler being our first child and having such a frightening start in life, I worried incessantly about his development. He was late to sit up (nine months). However he crawled, walked and talked within a normal time frame, although I drove my family and friends crazy during all of it. Today I am happy to report that Tyler is doing great. He is in K3 preschool class. He knows his colors, shapes, sizes, ABC's, can count to 20, knows days of the week and months of year and loves to sing all kinds of nursery rhymes. His favorite things to do are play in his sand box, swing and "work" with his daddy. Tyler can even tell you his pectis is a "sinkie hole" and his scar is a diaphragmatic hernia scar.

The problems we face today are frequent bouts of pneumonia and bronchitis. He has not been hospitalized since his first year but we do have to administer antibiotics and do the nebulized breathing treatments when he is sick. Tyler is not a very good eater. He is getting better over time. He never really liked his bottle and was indifferent to solids when they were introduced. He still acts like he could do without food. We searched and asked for help many times with this problem. No one has any good answers or suggestions to help. We were told, "Don't worry about it, he will eat when he gets hungry enough" and then the same doctor would fuss at me because Tyler was underweight.

Perhaps our greatest obstacle now is treating Tyler's severe scoliosis. He has to wear a Milwaukee back brace for a year. He does not like it but accepts it without to much of a fight most days. He will have to wear this brace until he stops growing to avoid having surgery.

And as Paul Harvey says, here's the rest of the story -

In January 2001, on Tyler's 7th birthday, he started eating an unusually bigger amount of food than normal. That night he complained of his belly hurting so I figured he had a stomach ache, but contacted the doc anyway. He said not much to do for overeating but to give it time. Well Tyler kept complaining and was too the point of crying when my "gut feelings" hit me that something was not right. Tyler has been followed up by a local pediatric surgeon Dr. Abrams since when I joined CHERUBS in 1997 (he is not the surgeon that did his repair - but I sure wish he had been!) Since Tyler was repaired in Charlotte and we were transported there, after I found out that sometimes reherniations were possible I thought it wise to get him on-board with a pediatric surgeon locally and we finally had one that was familiar with CDH!) Anyway, I took him to the ER, but the wait was long and Tyler feel asleep so I took him back home, thinking he must be okay now or else he would still be awake crying. I returned home with full intentions of my aunt that keeps Tyler before & after school to take Tyler to dr. ASAP in the am, instructing her to make sure to convey to the dr. I was concerned about the patch (Dr. Abrams had always told me if anything went wrong with the patch that I would see gastro-intestinal problems). The pediatrician examined him and found nothing to be concerned about. He thought he might have a stomach virus so he put him on meds to slow down motility. That seemed to work, for a few days.

Six days later, while Jim (husband) was out of town, Tyler started complaining of stomach hurting again, this time the medication didn't help, he fell asleep yet was so very restless, finally waking up at 3 am crying so hard from the pain, I have never seen him in so much pain! Motherly instinct hit me like a brick this time, I was going to take him to the ER and stay, no matter how long even if he "seemed to get better". I took him to the closest hospital (a branch of the main hospital thinking if he needs to get somewhere fast this is the closest one and they can take us by ambulance). So I go in, with guns blazing telling the ER doctor what Tyler's been doing, and what his history is and what I suspected was happening. I am ever impressed with this ER doctor for listening to me, and taking me seriously. He asked me had he been throwing up and I told him no, and he asked if he had been having BM and I told him yes. They ordered ax-rays, he had to drink the barium but before they came to get him he for the ax-ray he started throwing up first barium, then bile and fecal matter (sorry I know that is gross). The x-ray came back enough barium made it so they could tell that it appeared like he had a bowel obstruction and that the area where the patch is looked funny. He contacted Dr. Abrams (pad surgeon) immediately who said get him to Greenville Memorial that he is to go into surgery as soon as he arrives. Well, for some reason, still not acceptably explained to me, they said it would be an hour before an ambulance could transport him inter-hospital system - however if he had been home, one would have been dispatched immediately!) And there he is, needing emergency surgery! So the nurse who was about to get off duty, volunteered to drive us to the emergency room to meet Dr. Abrams at the main hospital which is a 30 minute drive. Thank God for blessings such as that nurse. There are really angels among us!

When Tyler arrived at GHS they did another ax-ray to confirm the first and had me sign a surgical consent form that they really could not diagnose exactly the problem until they were in surgery. When they went in they found that he had a ovules (it is like the intestine is twisted in a manner that it becomes a knot), also a great amount of adhesions (scar tissue) from his chi repair in 1994. The scar tissue is normal bodily function and there is no way to stop it or to know how much the child's body is going to make. This was a mixed blessing, it was not good, but the scar tissue had attached to the bowel and kept it from completely rotating and obstructing (that is why he had been able to have bum's). The ovules came from an initial complication (listed in the discharge summary) that he had a slight degree of mal-rotated intestine. The mal-rotation is common in chi, but doesn't always lead to problems like this. The Ladd's procedure is the technique they use to correct the intestinal twisting. They also removed the bowel adhesions, found that his stomach was adhered to the patch, so they could not actually visualize the patch and chose not to disturb the stomach or the patch, since neither was causing a problem, and they also removed the appendix since it was completely on the wrong side of the body and wouldn't fit back where it was supposed to and isn't really needed.

Tyler is still being treated for scoliosis with wonderful results. He has an S-shaped curvature of his spine. Shriner's here in Greenville SC follows him for that. He wears a back brace for correction in hopes that he will not have to have surgery later. As long as his curves stay put at 20-25 degrees or less he is okay (that is without the brace). In the brace the curves are 12 and 15. He only has to sleep in it at night now, but earlier on he had to wear it 22 of 24 hours.

I have learned that life is an uphill battle, not a rose garden. I have learned how important perseverance is. I have also learned how blessed we are to have Tyler still in our lives.

Tyler's mom, Susan S. Grubb (South Carolina)

Tuesday, October 27, 2015

October 27 - Dear Nicholas Sparks (Guest Blogger Karli Pulse)

Dear Mr. Sparks,

Where do I begin?

When we found out for sure that we were expecting our first child we were ecstatic! It took us almost 2 years. My entire pregnancy was nearly perfect. I had no morning sickness, no odd cravings. My water broke almost3 weeks early, but he was perfect at 6.10oz and 19 in long.

When we found out we were expecting again, we were overjoyed. Everything was perfect again. Or so we thought. I had my first ultrasound at 9 weeks to check dates. Everything was fine, we were told. I continued with my monthly check-ups until I was 19 weeks.

We went in for the "routine" 20-week ultrasound. We did not think anything of the techs speaking in "code" They did everything not to alarm us. When I think back I can still see the pale, blank looks they had. When I asked if anything was wrong, they just passed it off as being hard to see everything because he was still so small. We went home thinking things were great.

I was not scheduled to see the doctor for 3 more weeks. In that time we did not get a call from the nurse confirming that things were OK like we did with Austin. I thought they must only do that when it is your first baby. Boy was I wrong!

When I went in, I asked my nurse why she had not called. She then told me that the etches had sent my results to the wrong doctor and my doctor has just received the report 2 days prior. She also said there were something's the doctor wanted to discuss with me. My mind was racing, could it be twins.....or was my due date way off?.... The time waiting for the doctor seemed like hours. She came in and explained things to me. I was blown out of the water! Like so many others I had never even heard of a diaphragmatic hernia. She also said they were not able to see all the parts of the brain or heart. I was sick. How was I going to tell my husband? This doesn't happen to us, our baby had to be healthy. She must be wrong. I was refereed to a perinatologist for a level 2 ultrasound. We could not get in until Monday,(this all happened on Friday afternoon). I explained everything to my husband. We were both just in shock. We spent the weekend praying, reading and wondering. On Monday our nightmare was confirmed. CDH. There was a bright side though. He said the heart and brain looked normal. We had an amnio done to rule out the long list of other defects that go along with CDH (this later came back fine, no other defects). The doctor explained our options: abortion-out of the question, not even an option for us, fetal surgery-we felt this was still to experimental at this time, or carry the baby as close to term as possible and do the surgery after he was born. After many days of praying, more reading and meeting with more doctors, we chose to do the surgery after he was born. We felt that would be our best chance. We even chose to deliver in Minneapolis, 300 miles from our home in South Dakota. We met with all the doctors and nurses, made more trips up to Minneapolis and we thought we had everything in order. I even moved up there my last 2 1/2 weeks. I stayed (alone, Scot stayed home to work) at an accommodation center which had a bed and TV and that was about it. Scot would come up on the weekend and stay for my Monday DR appt. I had bi-weekly non-stress tests and biophys profile. Cole passed every test with flying colors. We thought we had this beat!

On Christmas Eve my mother-in-law brought Austin up to see us. It turned out that he had come down with a double ear infection.. So off to the ER in St. Paul, where we were staying with my brother-in-law. To top everything, I started to have contractions. I did not get too alarmed because they were still tolerable. By the time we were discharged from the ER and had the prescription filled I could hardly walk, it felt like my lower pelvic area was going to fall out! I told Scot we needed to go to the hospital NOW! I had nothing along. We tried to call my mother-in-law on the way but we could not reach her.

When we arrived at Abbot NW, I was already at an 8, and I had to push. With the holiday, and Minnesota weather I was just hoping that my doctor was on her way.

I was wheeled into the surgery area. Scot and my ill little Austin were not able to come in so they continued to try to reach my mother-in-law. They did. She came to get Austin. Mean while, they broke my water and I quit having productive contractions. The team from Minneapolis Children's were all there and ready. They went back. I continued to labor until 3 am when I could start to push. The team came back and at 3:19 am on Christmas morning Cole Robert was born. He was beautiful! The team started working on him right away. They put every kind of tube imaginable in him. Before they took him away, I was able to see him and touch him. The doctor told me there was an unforeseen problem; Cole was born without a sternum. His heart was laying just under the skin. I thought, "how could they not see that- they did every test under the sun?" After I was cleaned up my nurse brought me to see Cole. He was on hi freq ventilation, had a chest tube and every other kind of tube in him. He was on medications to keep him from moving. He laid there so helpless and here I am not able to do anything for him. As a mother that was so hard, there was nothing I could do but pray. The nurses told us that he was stable for now and that we should go back and get some rest, by this time it is about 5:30 am. We went back to rest. We did have the camera on him hooked up to the TV in my room so we could keep an eye on him. At 7:30 am we got a call from the NICU saying we need to come right over! The doctor told us Cole is not doing well on the high freq vent and we need to think about ECMO. We wanted to go through with it. They needed to do some ultrasounds of him first. In the mean time we were able to hold and spend time with Cole. While they were getting a scan of his head the doctor came in and said his blood gases were very low and that there was a pocket of air in his chest they could not control with the chest tube. He also said there was no way to tell how much damage had been done to his brain with the low oxygen levels he was getting. They just could not keep the levels up. He also told us that what ever we do from here on out we would be doing things TO him and not FOR him. Neither Scot nor I wanted that. We needed to make the hardest choice of our lives. We made the choice to take him off life support. But first we had Cole baptized. We then were able to go into a private room to spend time with Cole until he passed on. Cole was so strong, he just did not have enough lung tissue.....Cole died in my arms at 11:40am on Christmas day. This was the worst day of my life. We left for home the next day, without my baby. I felt so empty inside, it hurt so bad. He was buried on the 29th in my husband's hometown.

Not a day goes by that I don't think of and miss him. We never got to hear him cry or see him open his eyes.

I am Karli, mother of two beautiful boys, Austin is 3yrs and Cole is 8 hours old. Thank you for listening.

Cole's mom, Karli Pulse (California)

Monday, October 26, 2015

October 26 - Dear Nicholas Sparks (Guest Blogger Sandy Graham)

Dear Mr. Sparks,

During a 13 week scan it was noted that the baby I was carrying had a thickened NT sac behind the neck, and I was told that I should have a CVS done as this could mean that the baby may have chromosomal damage. The next week I had the CVS done and then had to wait an agonizing 2 weeks for the results.

My husband took the day off work to come in with me and we were over the moon to find out that all was well. What's more, I found out that I was having a girl! We have 2 wonderful boys, and I fell pregnant again hoping I would be blessed with a girl. So you can imagine how excited I was, not only to be told my baby was healthy, but also was a girl.

However, my excitement was short lived when I had my 18 week scan during which I was told that my baby had her stomach in her lung area. At the time, naive as I was about it, I said "Oh that's OK it will just go back won't it?" But I soon found out it wasn't that easy.

I can still remember how devastated I felt. I had to drive 45 minutes back home through city traffic (Brisbane) and I don't know how I managed. My husband Ian and I had to go back to the hospital the next day to meet with the team of specialists and they fully explained everything and they gave my baby a 50/50 chance of surviving. I was asked if I wanted to terminate and of course I said no. I would be forever wondering "what if?" So the months went on and each time I had to go for another ultrasound, starting with an MRI scan. I hoped they would say it was all just a mistake but that never happened. Instead they would remind me that things weren't looking good and let me know in a subtle way that I should prepare for the worst. I dreaded going to the hospital because to me it felt like my baby was normal. She moved heaps and kicked strongly, but they said it would seem this way because she didn't need to breathe in the womb.

I was 32 weeks when they said I had started to fill with fluid. However, they didn't want to syringe it out as I may have gone into labour and they wanted me to go as close to term as possible. This was so she would be more mature, thus giving her lungs the last few weeks to expand. They had scheduled my inducement for the 39th week so they hoped the fluid wouldn't get too much.

Finally I made it to week 39 and the day was the 7th of January, 2003. After 6 hours in labour, Kirra Renae was born at the Royal Women's Hospital in Brisbane. I didn't even get to look at her. My husband put his head on mine as soon as she came out and then they took her away. The midwife said the doctors would come and get us when she was stable. Four hours went by and I kept asking why wasn't anyone coming to take me to see my baby, but no one would answer me. (Later I found out why, no one thought she would live.)

Finally in the 5th hour they said we could go see her. I was not prepared for what I saw or heard. How could you be? There were machines and IV lines everywhere and the oscillating vent made her body shake. Her skin colour looked bruised in places from the lack of oxygen she had suffered. The doctor said that they had found stomach, intestines, bowel and some liver in the lung space and couldn't see any lung at all on the left side. He said that her heart was pushed to the right side and they could only see a small bud that was her right lung. He gave her less than 10% chance of surviving and thought it best if we had the hospital chaplain come in. That brought me out of my shock and I said no way, that she was going to fight and that she was strong and she would live. They told my husband that they didn't think she would make it through the next hour let alone the night so he should bring in family to see her. He drove home and got our sons, my father and my brother (my mum was with me). After they all came and went I was given a sedative and slept. I woke early the next morning and went to see Kirra. She had had a rough night because they said she couldn't be moved even slightly or else her sats would drop. They were just trying to bring her sats back up when I came in. I held her little hand and within minutes she was stable again, much to everyone's surprise.

By the 3rd day they had completely turned off one of her blood pressure medicines. On the 7th day they operated. We were told that she wasn't going to be anymore stable and if they didn't operate she would go downhill anyway, and that even then they didn't think she was strong enough and not to get our hopes up. They turned the isolation room she was in, into the operating room, as she still could not tolerate movement. Yet again they were stunned by Kirra as none of her vitals even changed during the 50 minute operation.

Kirra continued to improve and on the 16th day the oscillating vent was turned off and she started to breathe against the normal vent. On the 20th day the nitric oxide was fully off and 2 days later she was extubated, though she had to stay on 75 mls of oxygen through nasal prongs. Kirra was 34 days old when she was able to breathe the same air as us and she came home one day before she was 3 months old. She had only mild reflux, and we moved from the city to get her cleaner air. She avoided the winter colds and flu.

Kirra is now nearly 2 years old and has never looked back and has had no more problems. Last month she was fully discharged from seeing the doctors, and they say she may only get a little breathless running in school.

Wow I am so glad I went through with my pregnancy! I have a beautiful daughter and she is my shining star. I will be forever grateful to the doctors and nurses who helped save our daughter. I believe that hope and strength helped her too, and the heartfelt thoughts of friends and family banded together, brought strength to her as well. I hope this story lets others know that no matter how bad things seem there will always be a "silver lining!"

Kirra's mom, Sandy Graham (Australia).

Sunday, October 25, 2015

October 25 - Dear Nicholas Sparks (Lesa Plaisted)

Dear Mr. Sparks,

Where do I begin, considering it has only been 6 weeks since the passing of Aiden? Well, I guess I will start at the beginning. Austin and I have been married 2½ years and together for 6½ years. We have a beautiful little boy that just turned 2 in August. When Caleb was just a year Austin and I decided that we wanted to try again. Because I had the IUD, the doctor told us that once the IUD was out, we would more than likely to get pregnant in the first 2 months. He was right. Exactly 2 months later, I found out as early as you could possibly know. I was only 4 weeks. It was so exciting. The pregnancy was going great. I had a small spell of morning sickness for the first 4 months. Considering the fact that when we were pregnant with our now 2 year old, I had quite a difficult time. I had Paracarditise of the heart (inflammation of the lining surrounding the heart) and acid reflux disease and he tried to come a little too early (32 weeks). This pregnancy was wonderful. I worked until I was 36 weeks. I had all the normal blood testing and ultrasounds.

I had my second ultrasound when I was 17½ weeks. My doctor had written down that he suspected that Aiden was "small." The ultrasound technician stated that everything was fine. Time just seemed to fly by. On June 27, 2003 I stopped working because it was just getting way too difficult to walk a lot, and Aiden had dropped quite a bit. When the time came closer and closer, I began having pains in my lower back and pelvic area. The doctor said I was fine and that it was "lightening." I had gone to the hospital when I was 37 weeks because that I thought I was having contractions 2-3 minutes apart and lasting 45-50 seconds and they were very consistent. When I got there they stopped. I was so frustrated. So they say that gravity helps labor so Austin and I would go walking every night for the next week. Nothing happened. I asked my doctor if I could get induced. He wanted to see the position of the baby so he did a small ultra sound on that Friday. I was 38 weeks. He told me that my amniotic fluid was a little low. The doctor said that he wanted to see me on Monday to check again. The weekend flew by. Monday was here and I went to the doctor. My doctor was worried. He thought that my fluid was measuring at only 5. He sent me to the hospital to get a better ultrasound. The technician there said that the baby was fine and that my amniotic fluid was at 11.2 and he rated me at an 8.

I never dilated except for a finger tip. So on July 21, 2003 at 10 p.m., I was induced. On the morning of July 22, the nurse began the PIT. By then I had dilated to 2 centimeters. As the morning went on, the pain grew strong and to the point that I couldn't handle it anymore so I asked for some medication through my IV. That helped me to relax. I took a nap. Then I remember the nurse coming in to check the monitor and seeing the look on her face. Please bear with me because everything from then on is somewhat of a blur. I do remember the doctor coming in and saying my blood pressure was up and so was the baby's. But two separate monitors where saying different. My doctor decided because I hadn't progressed, it would be good to just have a C-section. He said he didn't want to stress the baby anymore. I agreed. I called Austin because he was on his way to drop off Caleb and my sister at home, they were in visiting me earlier.

I remember a little in the OR. Austin and I were talking and waiting patiently. Finally Aiden was born at 2:45 p.m. Then my life stopped. They never showed me his face, you know, how they do it on TV, I remember looking over and seeing his little bum and the back of his head. I saw a lot of nurses. I asked if he was okay. I remember hearing someone say he is fine he just needs a little help breathing. Then I was brought into the recovery room. I was all alone for 30 minutes. No one told me anything. Austin, of course, was with Aiden. Then my doctor came and told me that Aiden would need more help that what our hospital could give him. So they were planning on transporting him by helicopter to Sacred Heart Children's Hospital in Spokane, WA. I requested to see him before they left. I don't remember much after they brought him to me until Austin received the phone call from the Neonatologist saying that we needed to get there ASAP due to the fact that Aiden was slipping away and he only had a 1% chance of living. I freaked out and screamed at the nurse to get the doctor in now I wanted to leave. The doctor came and said that he had made arrangements with Sacred Heart for us to stay there until I was ready to go home. The paramedics were in my room in 15 minutes. I put myself on the gurney and we were off. The ride was a blur due to all of the medication they were pumping into me. The next thing I remember is being in the hospital room and the nurse came in to tell me that I could go and see Aiden. They brought me into the NICU still in the bed. I sat by his side what felt like forever. I sang to him and told him that we loved him. He was so tiny. I learned from the NICU nurse that he was only 4 lbs, 6 oz. and 17½ inches long. The nurse also told me that the medication that they were giving him was keeping him alive until my mother-in-law arrived. The next thing I remember asking where my husband was. I felt so alone. I felt as if they were all starring at me wondering why my child was there and what did I do to cause this. Finally, my mother-in-law arrived. It felt like moments later. The doctor brought Aiden to our room. He turned off the machines. Once the doctor put Aiden into my arms, I knew that he was gone. I was an emotional wreck. Then all of a sudden, I felt something telling me that it was okay. I calmed down and played his elephant that his big brother had got him. "Now I lay me down to sleep, I pray the Lord my soul to keep, Angels watch me through the light, until I wake in the morning light. Amen." I then gave him to Austin to hold. He held Aiden for quite sometime. I felt so much pain for my husband. I had never seen him like this. He was just as an emotional wreck as I was. Austin then gave Aiden to my mother. Everything seemed like a big cloud for the next 24 hours. I was unconscious to the world. I had my heart torn apart. I am sure my husband had felt the same way. Then I was able to see Caleb. He brought a smile to our faces. Austin and I have said that if it weren't for him, we don't know where we would be today.

Later I had learned that my mother, mother-in-law, and two sister-in-laws went to a room with Aiden and held him. That made me feel good to know that they were able to know Aiden and to love him.

I don't remember if it was the next day that we learned that Aiden had passed due to Pulmonary Hypoplasia due to Diaphragmatic Hernia. I had no clue what this was. The doctor explained it to us. He also said that Aiden had a possible muscle disorder. This reason was because he was so small and that CDH children usually are not that small unless there is something else going on. Aiden lived for 12 hours and 25 minutes. He fought every moment he was here on Earth.

The staff at Sacred Heart were amazing. They are wonderful, compassionate people. I will never forget any of those that were there during this emotional roller coaster. After Aiden had passed, one of the NICU nurses came in and gave me a beautiful box. It had mementos of Aiden. The blanket he used, little pieces of hair, hand prints & foot prints, pictures, the little knitted hat that he wore, and a few other items.

I went home on Friday. We had a grave side service for him on Tuesday, July 27th. It was beautiful. We sent balloons into the sky. There was music played "Amazing Grace" with bag pipes in honor of Austin and my families. Austin's mother is Irish and my 2 siblings, my mother and I are Scottish.

It has been getting easier to live by the day. The nights for me are hard. Austin has had headaches since Aiden's passing. He mentioned to me the other night that they aren't as bad as what they have been.

On September 2, 2003 we learned that Aiden had no chromosomal disorders and that he had an Eventration Diaphragmatic Hernia, meaning that he had the outer wall to his diaphragm but no muscle. His liver, stomach and intestines had moved up into his chest cavity. We also learned that he had stopped growing 4-6 weeks prior to me giving birth. The reason is unknown. My placenta was "crap." They used large words that I have yet to understand. But, I have been looking into the medical terminology, so I will update the reasons for my placenta not working right later on. The neonatologist mentioned that he didn't understand why at the last ultrasound it wasn't noticed that he was very small. His head was the size of a 41 week gestation newborn but his body was that of a 32 week old baby.

We know that there will be questions never answered. And we know that Aiden is in heaven waiting on our arrival. I feel like he was here for a purpose. He brought our family closer together in more ways than anyone knows. He has created me a new path to walk down. If it wasn't for my precious little angel, I wouldn't be here telling the incredible journey he had.

Aiden's mom, Lesa Plaisted (Washington)

Saturday, October 24, 2015

October 24 - Dear Nicholas Sparks (Guest Blogger Caroline Gould)

Nadia Helen Gould was born at 2.45pm on the 10 September 1999 at 33.5 weeks. She weighed 2.470kg and was 46cm in length. During the pregnancy Jon and I needed and were constantly given Hope, so that is what we named her: Nadia.

I had an amnio at 17 weeks and, as the obs. did a full fetal at that time, nearly didn't return for another. I had an easy pregnancy with my first child and had just the one scan at 19 weeks, so I didn't really see the need. But I loved to see my babies on the screen so returned just for the sake of it at 21 weeks!! Little did I know that I was to see Nadia on the screen every week for the next 11 weeks.

The scan at 21 weeks revealed what the obs. was sure was a hole in the diaphragm and told me the smallest bit about CDH and that these things often righted themselves. On returning the next week there was a bigger shadow and the group looking at the pictures were beginning to question what they were seeing. By the third week the shadow was even bigger and they started to talk about a cyst on the lung. By 25 weeks this "cyst" was so large it was advised that it be drained immediately and then a shunt put in as a permanent drain. This way the lung (left) would be able to grow. By now I was under the care of a superb obst. (Jan Dickinson) at King Edwards Hospital for Women in Perth. Jan saved Nadia's life. She drained the "cyst" - a ghastly experience that meant piercing through the uterus and into Nadia's, chest and drawing the fluid out. (I had two courses of steroids to help the lungs a little in case the procedure bought on labour.) On the screen Nadia's heart, which was pushed far over to the right, moved back into place and her left lung began to look a little more like a lung. I was told that the "cyst" would probably fill up again over 4 or 5 days and therefore a shunt would need to be inserted for drainage. Returning 5 days later the cyst had not filled up at all. We were told that the vessels around her heart were looking much less stressed and they confessed that Nadia would not have survived passed 26 weeks without the drain as the heart was under too much strain.

It was decided that I should be scanned weekly to view the "cyst". Over the course of the next 8 weeks or so the "cyst" filled up slowly with fluid. Meanwhile they were very unsure of all the other shadows that they could see and found it very difficult to work out where the stomach and other organs really lay. Looking back I wondered how many pre-diagnosed cases of CHD they had actually seen because CDH was never really mentioned by the team at Kind Edwards.

At 32 weeks it was decided that another drain was required. This time Nadia would not have a bar of any needles going anywhere near her!! Initially they wanted to paralyse her to keep her still during the drain but they never got near her and I passed out due to the drug they gave me to stop the uterus contracting. I started to contract anyway (!) and ended up in the hospital for the night but luckily the contractions stopped. Another attempt at a drain was scheduled for the following Friday.

Meanwhile I was growing bigger and bigger. I was HUGE with fluid and the following Thursday evening, after a rather strange day involving a great deal of rushing around preparing for Nadia's arrival (!) my waters broke. (Nadia really did not want any more invasion of her space!!) Contractions were few and far between but I was kept in over night and Jan and the paeds were booked to see me in the morning. The scan showed that there were still gallons of fluid in me and that there was no way Nadia could get her head down for a natural birth. So a C-section was scheduled for 2pm that afternoon. The operating room was packed full of doctors and paeds - Nadia had 5 waiting just for her!!

With my waters lapping the boots of the doctors, Nadia let out a hearty squawk. She was handed immediately to the paeds who immediately intubated her. They wrapped her 43and held her up to me. I saw her nose and eyes and then she was gone. And this was the hardest part of all. I was now powerless to help her. I had to immediately focus on the c-section recovery. Jon was able to follow Nadia and he was impressed with the number of doctors assessing her. She had 3 x-rays over a course of 1/2 an hour. By the third it was clear. A large hole in the diaphragm (left side) with her stomach, spleen, intestine/bowel and a small corner of liver sitting neatly in the left lung area. She was breathing with a little help from the ventilator and did not need oxygen.

They decided to immediately move Nadia to Princess Margaret Hospital for Children and the repair was scheduled for the next morning. Jon went with Nadia, following her ambulance on the short journey. Jan came and explained to me about the fluid, all the scans etc: because the stomach and gut were squashed into the lung cavity, there was not enough room for Nadia to swallow fluid, pass through the stomach and the gut and out again. So it kept building up in her stomach (what they thought was the cyst) and in me.

I was able to telephone directly through to Nadia's nurses and did so every hour or so. She had her operation the next morning and Jon was there to talk to the doctors. The operation took 1 1/2 hours and the surgeon (Mr Gordon Barron-Hay) declared it was a satisfying job. Jon and Nadia's doctor phoned me to say that she was strong and her vitals were good and she needed no help with oxygen. I spent the day ensuring I would be free from the epidural by the evening so that I could visit Nadia the next day. I longed for her and if it wasn't for the wonderful nurses - especially the night nurse who came and talked to me regularly, I would have gone mad. Jon came to collect me the next (Sunday) morning and at last, there was my wee girl. I was fully prepared for the sight of her and focused wholly on talking to her hoping she would recognize the old nag that had been spurring her on all those weeks. She was heavily dosed on morphine but I was able nuzzle my face right up to hers. It was wonderful. Returning back to my hospital that evening was awful. I sat on my bed, desolate, wondering what on earth I was doing there. There were no rooms available in the neo-natal ward for me so I couldn't stay with Nadia. But I was desperate to get out of my hospital and be with my family so I called for the doctor on duty and requested that I be discharged. She agreed I could be discharged the next morning.

For the next week I set off to the hospital every morning and stayed until late evening. Expressing my milk every 3 hours, and taking care of Nadia. Deep down I was as scared as, but remained focused on the fact that Nadia seemed to be kicking all the hurdles to touch. There was joy in her first bowel movement, joy as the morphine doses came down, joy as she was able to tolerate more and more breast milk - through a nose tube. The ultimate was day 5 when the doctors took her off the ventilator. I sat there all afternoon watching every breath she took. Day 6 she went onto the breast for the first time - very hard and tiring for her, wonderful for me. By day10 she was moved into the nursery attached to the neo-natal ward and I was moved into the hospital. I was now responsible for all her care, except her obs.

She gradually weaned off the nasal tube and onto the breast and began to put on weight.

Day 14 Nadia came home.

Nadia had emergency surgery to relieve bowel blockages at 6 weeks old. She was home within 5 days. She has suffered reflux and has remained small for her age. Her diaphragm took a while to regenerate of its own accord and her x-rays continue to pull the punters.

But she is now a robust and healthy 2 year old, talking like a 12 year old with the attitude of a 16year old!!

Nadia's mom, Caroline Gould (Australia)

Friday, October 23, 2015

October 23 - Dear Nicholas Sparks (Guest Blogger Kelley Piasecki)

Dear Mr. Sparks,

We went in for our 32-week pre-natal check on July 31, 2001. It was supposed to be a regular appointment, but the nurse mid-wife, Margo, got concerned when she measured my belly to be 38 cm. I should have been measuring 32 cm, with being 32 weeks along. Margo then decided to set up an ultrasound right away to see why I was measuring way off. I was referred to Dr. Kuhlmann and Dr. Wigton in the PAC (Perinatal Assessment Center) at Waukesha Memorial Hospital. Their office fit me in their schedule almost immediately that same day.

Dr. Kuhlmann had the ultrasound probe on my belly for what seemed like 20 minutes, without saying a single word. He took the probe off and said, "We have a problem. You won't be able to deliver this baby at Waukesha Memorial Hospital. You're going to have to deliver at Froedtert, and the baby will have to have surgery after it is born." (The baby would get the best care at Froedtert/Children's Hospital). He then proceeded to tell us that the baby had a diaphragmatic hernia, which is a hole in the diaphragm. The liver, intestines, gall bladder, and one of the kidneys was being pushed up through the hole into her chest, which was pushing the heart and one lung over to one side where it shouldn't have been. The reason why I was measuring larger than normal was, as they believe, because the baby's esophagus was being pinched by those organs being pushed up into her chest. She wasn't able to swallow the amniotic fluid; she was probably just regurgitating it. When the doctor started explaining the diagnosis of our baby, John and I were completely shocked. How could this be happening? I started crying, knowing that our baby would need to have surgery, and not knowing the outcome of our baby. John and I were terrified. After a long talk with the doctor, we walked out of the office and down the hall in complete silence. John and I didn't know what to say to each other. We were in shock and couldn't believe this was happening to us.

The OB doctor that we were referred to wanted to schedule weekly ultrasounds until my due date, to keep an eye on how the baby was doing. There were some other things that the doctors saw in the ultrasounds following the first one. They saw that she had fluid around one of her lungs, which in later ultrasounds, disappeared. They saw her making breathing movements in her belly, and she had hiccups. which both were very good signs. In another ultrasound, one of her hands was clenched tight into a fist. The doctor was concerned with the way the fist looked. (It later turned out to be nothing) Since a diaphragmatic hernia could signal that there were other problems, such as a genetic defect, the doctor suggested that we have an amniocentesis done. It would show if the baby had either Down syndrome, or three other genetic defects that would be incompatible with life. John and I weren't real crazy with the idea of doing an amnio because there was nothing that we would do to the baby, even if it did have Down syndrome or the other fatal defects. We talked it over and decided to go ahead with the amnio because we wanted to prepare ourselves for the genetic defects that the baby might possibly have. We scheduled the amnio for that following Friday (August 3, 2001).

We went in for the amnio, and we were both pretty nervous. I remember the nurse taking my blood pressure and heart rate. At the time that she was taking it, I was pretty upset with emotions, and my blood pressure read sky high, and my heart rate measured at 148 bpm. They started the amnio, and the doctor had to cut it short, because my nerves got the best of me, and nausea kicked in. Luckily, they were able to get enough fluid. So then the waiting game started for the results. After ten days that seemed like an eternity, we received good news. There were no apparent genetic defects with our baby. What relief we felt when we were told the news!

From then on, my ultrasounds showed that the baby was stable and growing. At my last ultrasound before the birth, the baby measured to be approximately 8 lbs., 13 ounces. I was 36 weeks at the time—technically, I still had 4 more weeks to go. The doctor measured how much amniotic fluid I had by ultrasound, and it showed that I had 48 cm. of fluid. Just to give you an idea, the high side of normal measurement for fluid a pregnant woman should have at this time in pregnancy should be 25 cm. I had almost double the amount of fluid. No wonder I was so uncomfortable!

Dr. Wigton decided it was time to talk about induction. He and his partner, Dr. Kuhlmann, talked it over and decided that I should come into the hospital on Labor Day (of all days!), September 03, 2001. They were pretty confident that the baby was at a strong enough size to endure what it was going to go through. The doctors also did not want to see me get any bigger than I already was, and they also wanted the birth to be a controlled one. The Friday before induction, the doctor checked me for dilation, and I had not started dilating yet. His plan, on Monday night, was to insert a strip to make my cervix softer and to start the dilation. Then pitocin would follow that. I was pretty nervous about induction, seeing as I hadn't gone through it with my other two children, and because I've heard some horror stories about the pitocin drug. My baby was safe and so alive inside me, and I was so unsure and scared for what the baby was going to have to go through once it was born.

Well, Monday came, and I still hadn't packed my suitcase. I remember packing it just hours before we were ready to go. As we were leaving, I kissed the kids goodbye (John's parents were staying with them at our house) and fought back the tears as we left.

I was supposed to be there at 8:00 p.m., but we arrived at 7:30 p.m. I got checked into my labor and delivery room, got my gown on, and waited. A nurse came in and checked my cervix, and to my surprise I had dilated to 2 cm! So because of the dilation, they chose not to insert the strip, because they figured it would make me deliver in the wee hours of the night. They wanted to try to make the delivery come during the day on Tuesday, when they had a full staff that would be more prepared for the baby's situation. So they went to plan B, which was to start the pitocin at 3:00 a.m. and go from there. I was able to get a little bit of rest in before the nurses came in to get my IV and pitocin going. A couple of hours later, I started feeling the contractions come on. The contractions were still somewhat bearable, so I did not ask for the epidural yet. Instead, the nurse gave me some light pain medication. After that wore off, I thought it was time to ask for the epidural. I was experiencing severe back labor on my left side, and the contractions were pretty heavy and concentrated on my front right side. The anesthesiologist came in and inserted the catheter in my back and started the medication. I felt relief in about 30 minutes it was great! (I didn't have any pain medication with Sam and Haley's birth, so this was heaven!) The epidural went all the way down to my toes, and my legs became dead weight. I did not like that feeling at all, so they came in and turned the medication down a bit. There was a point when I started feeling the back pain and front side pain again, so they had to come and turn the epidural back up again. The delivery doctor who was on call, Dr. Newcomer, came in to poke a little hole in my bag of water. She wanted the water to slowly leak out to give me some comfort and to maybe get things rolling a little. She checked the leakage a couple hours later and found that the water wasn't coming out as much as she wanted it to. So she tried poking another small hole, only this time, a gush of water came out. The nurses ended up suctioning the water off the bed, because it was too much water to wrap up in the chucks (bed pads). They ended up suctioning up approximately 2 liters of amniotic fluid, and I still had more in my uterus that was to come out later.

Since my water broke, labor came on faster. Before I knew it, the nurses told me to start pushing. I didn't feel like I was doing anything, because I didn't have any feeling below my belly. I could only feel the pressure in my head from pushing.

I pushed the baby out rather quickly. It was a girl, and she was beautiful. She looked great, but she didn't cry. She was trying to take breaths but was not able to. After they let me touch her hand, the doctors whisked her away to her bed on the other side of the room. They started working on her immediately, putting a breathing tube down her throat. That was extremely hard to watch. I wanted to see and look at my baby daughter, but I was forced to turn away, because I just couldn't handle watching the doctors and nurses work on her like that. They finally got everything taken care of that they needed to, and the doctor let me give her a kiss on the cheek before she had to be whisked off again, only this time down to the NICU (Neonatal Intensive Care Unit). She had an Apgar score of 2 immediately after she was born, but by ten minutes, it was up to 9 out of a possible 10. When they took her away, I told John to go with her, so that one of us would be with her.

John came back a little while later. He told me that she was stable, and they were just "watching her." He said that she was alert for only a little while, and Anna grasped his finger when he touched her hand. They then had to put her on narcotics so she wouldn't fight the breathing tube. They had to put a chest tube in for her lung. At the time that she was down in the NICU, they measured her. She was 8 pounds, 7 ounces, and 22 inches long! (And she was 3 weeks early!)

After John had updated me back in my room, he decided to go down to the cafe in the hospital to get us both something to eat. I wasn't crazy about their hospital food, but I was starving! In the meantime, Dr. Sysyn, one of the neonatologists, came into my room. He proceeded to tell me that Anna was starting to go downhill. And from the sound in his voice, it sounded pretty serious. How could this be, when just 30 minutes prior, she was stable and seemed to be OK? I wanted desperately for John to be there with me at that second. Finally, John came back to the room, and his smile quickly faded when he saw the look on my face and saw Dr. Sysyn sitting there next to me. The x-ray that they had taken of her chest and belly showed that the diaphragmatic hernia was worse than they thought. In fact, one doctor had told us that it was one of the worst ones they've ever seen. They had originally thought, by previous ultrasounds, that there was just a hole in her diaphragm that was allowing all these organs to be pushed up into the chest, but in fact there was actually no diaphragm to be found on her right side. And they also made the discovery that Anna's right lung was not developed, that it was only tissue. But yet Dr. Sysyn kept saying that they were "cautiously optimistic." John and I held on to those words.

The next three days were like a roller coaster. We would get some positive news, but then a short time later, bad news would come our way. Our emotions were pulled in every direction possible. We had members from both sides of our family at the hospital almost constantly. They provided us, as well as each other, with the love and support that we all needed.

The morning after Anna was born came more bad news. I remember being asleep after having a rough night with pain, when Dr. Sysyn walked into our room. It was about 6:00 a.m., and when I saw him, I knew it wasn't good. I told him, "I was hoping I wouldn't see you this morning," meaning it could only be bad news that a neonatologist would come into my post-partum room at that early hour of the morning. He told us that she had not been doing very well since 4:00 that morning. The doctors had decided to put her on ECMO. ECMO is a heart and lung bypass machine that requires many blood transfusions. What ECMO does, is it pumps the blood out of the body, circulating it through a machine, and then pumps it back into the body. Basically, her heart and her one good lung would be working outside of her little body. We feared the word ECMO. We were told before she was born that it would be a possibility that she would have to be placed on ECMO. It's the last thing they can do for support. If she didn't get through this, then she wouldn't live. One of the downfalls of ECMO is bleeding in the brain, because of the blood thinners and coagulants needed to be on to prevent clotting through the tubes and the machine itself. There were just so many risks. We didn't want to hear that our daughter was going to be on this type of support. It was devastating.

After we got done talking with Dr. Sysyn about the procedure, we quickly got dressed and headed down for the NICU. They were going to transfer her to the PICU, because of there being more room for the ECMO machine. I remember going to her while she was still in the NICU. The team of doctors and nurses were preparing her for the transfer down the hall. It was a big ordeal. She was hooked up to a lot of machines, and they had to figure out who was going to take which machine on the transfer. She was on an oscillator at the time (a breathing machine that went into her mouth and made her lung pant kind of like a dog- very fast). They had to take her off of the oscillator for her transfer, so one of the nurses had to manually pump air into her mouth, by bagging her. They were finally ready to take her down to the PICU, and I remember John wheeling me in the wheelchair closely behind her. We later came to find out that the NICU is only about 1 minute away from the PICU, but when they transferred her, it seemed to have taken about 10 minutes. They brought her into her room in the PICU and immediately started hooking her back up to the machines. They wouldn't let us go into her room, but we could watch from a short distance. Oh, how I wanted to just take her away from everyone- every doctor, every nurse, the hospital. It just seemed like this shouldn't have been happening. She was so little, and to see all these doctors, nurses and machines all surrounding her was absolutely overwhelming and devastating.

We were then taken to the waiting room, down a short hall, which kind of came to be "our" waiting room. With so much family there, we took over the whole room. We waited for what seemed like an eternity for the doctors and nurses to get her hooked up to the ECMO machine. It's actually considered a surgical procedure, where they insert a catheter into one of the main arteries in her neck. That catheter is what pumps the blood in and out of her body. The doctor finally came in the waiting room to tell us that the procedure was done, and that she was on ECMO. For the next 6 hours or so, she was stable on ECMO, but still in very critical condition. We were optimistic to hear the word "stable" but scared to hear the word "critical" in the same sentence. They started having trouble with her condition and finally realized that Anna's artery was smaller than they anticipated. So Anna had to go through another procedure, so that the doctors could insert a smaller catheter into her artery. This time, it was a couple hours before we heard anything on how the procedure went. The doctor finally came into the waiting room, and told us that she was doing much better on the smaller catheter.

The next 24 hours her blood gases continued to go back up, and her blood pressure got much better. However, they had to put her back on the oscillator because the blood wasn't circulating well enough through her body. So even though her vital signs were looking better, she had to be on more support. They took her off the paralyzing medication to see if she would start moving her limbs. They had her on that medication, along with narcotics, so she wouldn't feel any pain, and so she wouldn't fight the tubes they had in her. It took her longer than usual to start "twitching", but eventually she started twitching her little hands and feet. There were a couple of times she twitched her hand and foot when I rubbed them. I wanted her so much to wake up and look at me. I never saw her eyes open on her own. Later on, Jim, her nurse, had to open her eyes to examine her pupils. That was the only time I ever saw her eyes. They were deep blue, and so beautiful. She had gotten so swollen and puffy from the medications and her color most of the time was reddish/purple. When Jim looked at her eye, he had to pry it open with two Q-tips. When they were closed, you couldn't even see her eyelashes, because of how puffy she was. I often wonder if she would have had long eyelashes like her big sister.

Thursday came, and I was discharged from the hospital. We had decided to stay close to the hospital that night, seeing as how we lived an hour away. We set up our room over at the Ronald McDonald House, which was right across the street from the hospital. We decided to have the kids stay with us, and they had a great time. There was so much for them to do there. At around 4:00 Friday morning, I woke up and decided to call over to Anna's room in the PICU to see how her night went. Her nurse, Jim, told me she was still stable and all her vital signs looked good. He also said that she would have the ultrasound of her brain to check for bleeding around 8:00 that morning. I went back to bed, and we all got up and got ready a couple of hours later. We headed over to the hospital, and I remember walking into her room and getting excited over Anna's color. She was no longer purplish, and her color was normal! I was so happy, but that emotion quickly changed when I saw the look on Jim's face when I asked him how the ultrasound went. He wouldn't tell me about the ultrasound. All he could say was that Dr. Luethner would be coming into her room rather shortly to speak to us. I knew right away from the look on Jim's face that it wasn't good. I immediately broke down. I knew this must be it.

Soon after that, a team of nurses and doctors, including Dr. Leuthner, came into Anna's room. They asked us to go with them down the hall to a conference room. I recall that long walk down the short hallway, following the team. I cried, knowing that they were going to tell us that they found bleeding on Anna's brain. I couldn't believe it was coming to this.

We got into the room, and they had told us what we had feared and dreaded the most. John held my hand tight, as Dr. Leuthner held my other hand. They did indeed find bleeding on her brain stem, which was obviously very serious. We had made it known to Dr. Leuthner earlier that if she did have bleeding on the brain from ECMO, that we wanted to pull her off the support. We didn't want to prolong her life in suffering, pain, and full of tubes. He knew what we wanted to do, but he waited to hear our final decision. After we came to from our shock of reality in the conference room, we told him that we wanted to immediately call our family and our Pastor, to get them down to the hospital to say their goodbyes to Anna. We had decided that we were going to pull her off support that afternoon. We figured it would be harder the longer we waited.

By early afternoon, all the family was at the hospital and taking turns going into Anna's room to say goodbye. (The relatives that were there at the hospital included John's parents, my parents, my grandparents, my sister and brother-in-law, my Aunt Sally, John's sister, her husband, and their 4 children.)
I wasn't in the emotional state of mind to be with anyone at that time. I just wanted to be by myself with my husband and my children. I couldn't look into anyone's eyes, as they came back into the waiting room from seeing Anna. There was a small room right off of the waiting room that I stayed in. John would go back and forth between both rooms, but all I could do was just sit there on the couch. As everyone made their visits, two by two, it seemed like hours, which in reality was probably only an hour. I remember goofing around with the kids in that room for about 5 minutes. John was doing "airplane" with them, and all four of us were laughing pretty hard. It felt so good to smile and laugh. But as quickly as the "goofing off" started, it quickly faded when we brought ourselves back to reality. When all the relatives were done seeing her, we decided it was our time to go in for our last goodbye. We took Sam and Haley in with us. Up to this point, we still had never held our precious baby.

Our plan was to have the kids hold her first, then have them go back into the waiting room with family. Then John and I would hold her, and we would then take her off the machine while we were holding her. That's exactly what we did.

We walked into her room and told Jim, her nurse, that we were ready to hold her. At that time, Pastor Steve walked into the room. It was such a relief to see him. Up to this point, we weren't sure that we were going to be able to have him there with us because the hospital chaplain wasn't able to get a hold of him all day. We had wanted him to be with us as we said our goodbye.

It was a big ordeal to prep Anna for us to hold her. They took out all of her tubes, except the ECMO machine. I remember the doctor's and nurses coming in and working together. They took her catheter, her chest tube, her IV's, and her breathing tubes all out before they gave her to us. It was really hard watching that, realizing that this was it. There was no turning back, and our last goodbye had started.

By this point in the afternoon, Haley was getting pretty cranky and tired. She had asked to hold Anna first, so we let her be the first one. She was so cute holding her baby sister for the first time. She kept looking around the room to see if anyone was watching her. Uncle Ryan and Aunt Pam were in the room, taking pictures and videotaping. I remember Haley just looking down and staring at Anna for long periods of time. Then we decided it was Sam's turn. Sam was such a proud big brother. He also stared at Anna for long periods of time. He adored this baby way before she was even born. During the time that the kids were holding her, a lady from the hospital that does clay imprints of hands and feet, came into the room. She took an imprint of each hand and foot. Sam and Haley helped by pressing Anna's feet and hands down into the clay. The kids thought it was really neat that they could help her with the imprints. Haley wanted to hold Anna one more time after Sam's turn.

After they were done holding her, the kids went back into the waiting room with the rest of our family. I let John hold her next. He held her for quite some time, and then he gave her to me, with the nurses' help. We still had to be extremely gentle with Anna, with the ECMO tubes still in her neck. It was really hard holding her. She felt heavier than I expected. This was the first time holding her, and I wanted it to be under better circumstances. It shouldn't have been this way. I just wanted to walk out of that hospital room with her healthy little body in my arms. But it wasn't that way, and I had to accept that. I loved holding my daughter. I just wish she could've looked up into my eyes and seen what her mommy looked like. She never saw me. We never looked into each others eyes. I think that's one of the things that hurts me the most, along with many obvious other things. I remember kissing her little rose bud lips, with her little tongue sticking out, and they felt so cool, smooth, and moist. After my turn holding her, we decided it was time to take her off the ECMO. Pastor Steve was right there along with us, offering emotional and spiritual support for Anna and us. He performed a beautiful, small prayer service for Anna.

The nurses and doctors came in and turned the machine off. One of the doctors, Dr. Ganayem, came over almost immediately and said to us, "She's gone." I will never forget those words. Anna turned blue almost instantly after they turned off the machine. I had told myself beforehand that I wouldn't be able to emotionally handle holding her after she passed away. But now, at this point, I wasn't able to let her go. We held her for what seemed to be about 30 minutes after she was "gone". She made some small hiccup sounds for a couple of minutes, which we were told was a reflux reaction from the hernia. I remember thinking that she was trying to breathe! My poor baby. I really hope that wasn't the case, that the doctors were trying to cover it up, so we wouldn't be more upset. John and I reluctantly gave her back to the nurses, and we went back to the waiting room where our family was waiting for us. It was really hard facing them with the thought that she was now gone. We all hugged, and Pastor Steve led another small prayer service.

We were only in the waiting room for about 5 minutes, when Dr. Leuthner came in the waiting room and whispered to John and I, "Um, she still has a heartbeat. Would you like to hold her again?" Of course, we wanted to hold her again! Part of her was still alive! I remember feeling really awful, that we had put her down when we thought she was gone, but she really wasn't. I remember feeling really bad that she was alone when her heart was still beating. We were given the choice of holding Anna back in her room or holding her in the waiting room, so everyone could see her one more time. We chose to hold her in the waiting room. I remember telling everyone that if they needed to leave, they could. I wasn't sure how they would be able to handle seeing her, because of her color change. John and I held her one more time, and then Sam held her for the last 30 minutes of her life. At this time, she wasn't breathing. It was just her heart that kept beating. Dr. Leuthner came into the waiting room about every 5 minutes to check her heartbeat. Each time he came in, Anna's heartbeat would be slower and more faint. She just didn't want to leave us! She tried to hang on as long as she could. Dr. Leuthner came in the last time to check her heart, and he looked up into our eyes and told us that there was no more heartbeat. At this time, Sam was still holding her. He didn't want to let her go. After a couple minutes, we gave her back to Jim, her nurse. I remember the look in his eyes when we gave her to him. We could tell that he felt so bad for Anna and us. We hugged him and thanked him for all his compassion, care, and concern that he had for Anna and our family. We thanked him for taking such great care of Anna. That was the last time we saw our sweet baby Anna.

We then had a funeral to prepare for. I remember one of the doctors that we had a consultation with before Anna was born, said that planning a funeral was something that could be a possibility. I remember thinking, a funeral? That couldn't possibly happen. But it did. Here we were, preparing it. We had a beautiful service for her, celebrating her short, precious life here on earth. Oh, and it was precious, as was she. We had the service videotaped, which I am thankful for, because it was quite a blur in my mind. I am so thankful for all the prayers, support, and love we received through this difficult time. We wouldn't have been able to get through it as well as we did without it.

Anna's mom, Kelley Piasecki (Wisconsin)

Thursday, October 22, 2015

October 22 - Dear Nicholas Sparks (Guest Blogger Cindy Goembel)

Dear Mr. Sparks,

I had just gotten used to being mom to a six-month-old little girl only to find I was pregnant again. This was a total surprise for us in view of the fact that it took me a little while to get pregnant the first time. This time, I took fertility pills and became pregnant real quickly. It seemed to be going great the first few months. However, when I got a routine sonogram everything had started.

My husband, Bob, and I went in for the sonogram together. Everything seemed to be going fine. Then all of a sudden the viewing screen was turned away from us and all these techs came running in. I was very upset. No one would tell us anything. I knew something was wrong. The only thing said to us was that we would have to talk to my doctor. The doctor called the same day wanting me to come in to talk with him.

I went in and the first question out of my mouth was "Is my baby going to die"? He said the baby had internal organs in his chest that could either be a hiatus hernia or CDH. He said he wasn't sure and told me I would have to have another sonogram in my ninth month. All in all this pregnancy was my best yet: go figure. I went in for my ninth month sonogram only to discover no change. I was then referred to a high-risk doctor.

The following day we saw this doctor. It was at this point with a level two sonogram that we learned all about CDH. The doctor had confirmed that our son definitely had one. We didn't know what to think; we didn't even know what CDH was. Well at that point we learned all about it. I had asked him the same question. "Is my baby going to die?" He told me there was a 50/50 chance of survival. Well we thought that was better than nothing.

We were taken down to the NICU unit and introduced to the nurses and doctors that we were going to be taking care of our son. They were all real nice. We also learned about ECMO: which was very scary. We were not sure at that time if our son would require it or not. The nurses said some do, some don't. We hoped he would not.

The next day my labor induced. I don't think I need to say how hard that was; forcing a baby to come out who we weren't sure would live. At that time I was 37 weeks and five days pregnant. I was told it was good that I had a baby previously otherwise induction wouldn't work. Well, 18 hours later (I was taken off pitocin overnight) Matthew Robert Goembel was born. He was pink and screaming. I can't tell you how happy we were!!! We had been told there was no way to determine how much lungs he had until birth.

On March 21,1993 Matt had his first surgery. He was only two days old and fighting for his life. He had his hernia repaired. They were able to close it with no patch. The real battle had just begun. Matthew seemed to come through with no complications. He was off his vent in 10 days. Boy! Were we ever glad. He was doing really great until they tried to feed him.

We learned a whole other spectrum---we thought he was going to get fixed and go right home. Ha! They had discovered that Matthew's stomach had flipped over. This is called volvulus. So, back to surgery we go. He had healed and they tried feeding him again. Nothing would go through and stay down. This time his intestines did the flipping and kinking over. Back to surgery we go. He healed and this time they put a j-tube and a g-tube in. He healed and they tried again. This time scar tissue had grown over his stomach opening. At any rate, he went back in and then he healed. The hospital never found out why.

I talked to Matthew's doctors and told them I wanted him out of there. They said, "no." I said "yes" and took him anyway. I had already contacted another doctor. This time it was a peds gastroenterologist; he was fantastic! Finally someone to help me. After numerous tests we discovered Matthew had esophagitis so bad that he could not have a nissen done which is what we needed all along. We had to wait nine months for him to heal. We went home and Matt was getting fed through his g-tube.

Matthew went back and had his surgery; it was a huge success. Trying to get him to eat was not successful. He remained on his pump 12 hours a day. No, this is not where the story ends. Matthew ended back up again. He broke down his surgery from constantly retching. Come to find out he could not handle feed tubings. His nissen was repaired and we went home. He was put back on the kangaroo pump (he had one before with his j-tube). Everything seemed to be going smoothly. Well, you would think we could get some good luck by now, huh?

We ended up back at the hospital. This time his stomach had swollen and we didn't know where it was coming from. After numerous tests they discovered that Matthew's colon and spleen were kinked over due to scar tissue from his original repair. Talk about scared. While they did the surgery they put tubes in his ears. He had been getting lots of ear infections. Lots of time has passed. He started eating and thanks to some pretty drastic measures. When I say drastic, I mean for myself.

Thanks to a feeding specialist and myself we were able to get Matthew's pump away from him and he started eating. He didn’t really know what to do. Then again neither did I. At any rate, on down the line he swallowed a dime for me. Shortly after he had his tonsils out. All in all Matthew has been hospital free for two years now! I can honestly say he is all boy.

We went on to have two other children, both healthy girls. I can't sit here and say I didn't think about all the problems Matthew had when I was pregnant with the next two girls. I didn't let it stop me though. I just figured I would deal with what God gave me. We have!!

Matthew's mom, Cindy Goembel (Illinois)

Wednesday, October 21, 2015

October 21 - Dear Nicholas Sparks (Guest Blogger Dawn Peterson)

Dear Mr. Sparks,

Oh where to begin ... I guess our story begins with Michael age 15 and how much we love being his parents. So much so we definitely wanted more children. It took ten years with eight miscarriages and one ectopic pregnancy, but finally Jennifer was born. We were so happy and still wanting to have more children. Try as we might only to have another miscarriage. At this point we pretty much gave up hope and decided we were fortunate just to have our two beautiful children and we would be happy and give up the dream for more. Well... God had another thought in mind. We found out that we were pregnant again. Matthew Ryan or Elizabeth Rue would be expected sometime in June 2000. We were not sure just when because I was not sure when we conceived. I was so happy. I just could not believe it could possibly be true when we reached the 12th week and nothing bad had happened. We are really going to have another baby! Things progressed as normal. I am a diabetic and require insulin. The shots increased to 4 per day. Small inconvenience to pay for such a reward. But this condition required close monitoring so I was scheduled for a level two ultrasound beginning in my 12th week and to continue every month. Everything looked good! It was time for the ultrasound again and I went to the appointment, alone as always, unaware at the news waiting for me. I must say that the technician was terrific, she showed no sign that something was wrong, but I do remember that it was taking a long time. The name would be Matthew Ryan! Then the doctor come in and my world changed forever. CDH what is that? I had never heard of anything like that. Ok.... Now what do I do was my question and what do we do to fix this. My head was spinning and I was there alone and so scared. The doctor left to call Children's Hospital in Philadelphia. She come back and explained they need films and more tests to determine if we would be a candidate for fetal surgery. So on with the testing. As it turned out we were not a candidate. At the time they did not think the hole in the diaphragm was very large. Good news for Matthew and us. The smaller the hole the better the chances for survival. So on I continued with all my appointments. We never told the other two children there was a problem until later in the pregnancy so they would be able to enjoy the thought of a brother. Michael was so happy; he would finally have a brother. Jennifer was not as excited at first, she wanted a sister. She quickly warmed up to the idea when I explained to her how great it would be to have 2 brothers who loved her so much. Since she adored Michael.this was an easy sell. I saw a doctor for some aspect of the pregnancy at least once a week and the last month, 3 times a week. I had the very best prenatal care a woman can get. I really had thought in my mind this child will do just fine. All these terrific doctors and they are all brushing up with all the latest information on CDH and will be ready for Matthew when he is born. I was getting huge. I was measuring at 52 weeks pregnant by the time Matthew was born. I really worked hard to get him to full term. The doctors told me that had to be my main goal so that Matthew had the best chance for a good outcome. I was on bed rest the last 3 months. I was at high risk for premature labor. Even though I was contracting the last 2 months almost consistently. I really never went into active labor. I was induced at 38 weeks and June 27th, at 7:01 p.m., Matthew Ryan was born to a room full of doctors and nurses. Ken and I were overwhelmed at the amount of people, 17 in all. Matthew was intubated and then rushed off to the NICU for evaluation. One hour later I would see my precious baby, gosh was he perfect looking. How could he be so sick? Reality was starting to set in.

Even after all the appointments and everything I had read from CHERUBS, I still was just now realizing the enormity of the situation. The doctors were terrific and kept us informed. When Matthew was just two hours old we had him baptized. I was so glad his Godmother could make it to the hospital in time for the ceremony. I was in a hurry, just in case! All through the night his condition was getting worse. I had heard the term ECMO from CHERUBS, but really didn't understand what it was and now the doctors were mentioning it to each other. Phone calls to Cardinal Glennon were beginning, they have had the best success with their ECMO unit. At 20 hours of life I kiss Matthew goodbye and he was rushed off to the hospital 20 minutes away. Ken and I would follow as soon as I could get dressed and signed out. The nursing staff was terrific. They had me packed and ready to go in 15 minutes and off we were to be with Matthew. By the time we got there Matthew was prepped and ready to go on ECMO. We could see him one more time. He was really looking sick. All went fine but the doctors were very guarded with his chances. They think the hole is larger than originally thought and this means more organs than expected in the chest cavity and less lung growth then had been thought. We would ride the roller coaster. His first night was uneventful. The next day ironically another child from further away would come in for ECMO. Trevor he was born two hours after Matthew with the same condition. The doctors and nurses were surprised, this had never happened before. This was hard, Matthew and Trevor were never on the same timetable for ups and downs. When one was doing well the other was having big problems and so on. Trevor would have his repair first ... he was really doing poor. Matthew's would follow a week later. His hole was larger, he had almost no diaphragm on the left side and required a gortex patch. The intestines, stomach, liver and spleen had been up in the chest cavity. Both would be on ECMO during the operation. Matthew did great and seemed like he would come off ECMO in 2-3 days. Then the other shoe dropped and he starting bleeding from the chest tubes (he had 3 of them). Then he started retaining fluids from all the blood products he was receiving; soon to follow the kidneys failed. They were able to get them functioning again. But then he was having trouble with his blood pressure. Finally Tuesday, the 18th of July, the day we have been waiting for he will come off today. His stats are good, trials were perfect and they were getting ready. Ken had to go to work, but I would keep him updated. Again I was alone, then Matthew's pressure started dropping. More medicine, but nothing was working and his pressure got VERY low. The call went out to Ken and the rest of the family get here quick. The doctors call heart specialists from around the country- what could be wrong. They did an echo and found nothing wrong. The only explanation was he had become too dependent on the ECMO and they turned the machine back up. The pressures got better, but still not great. Several hours later the decision had been made he would come off and we would let him go with the angels. We left the room while the nurses "got him ready" for us to hold. We came back in and he was dressed in "big boy" clothes. This was the first time he wasn't laying there in just a diaper! He looked so cute! Someone had made him a bracelet for his wrist and was wearing it, he also had a hat on to cover up his enormous head. When I delivered him they had to use suction and for this reason the head had swollen far more than usual. The surgeons did not completely take out the cannulas, but clamped them off and disconnected him from the ECMO so that we would be able to hold him. When the doctor placed him in my arms I remember feeling so relieved to get to hold him while he was still alive. I let out a gasp and said "this feels so good" and then the flashes began. The nurses were taking pictures and recording this moment for us. At the time I felt really odd about this. Now I am so thankful. They are wonderful pictures. My greatest fear had been that he would pass away before he would get the chance to be held by his mother. I knew this was the first and last chance for him to feel our arms around him. Ken and I held Matthew 4 hours as he journeyed on to God. Those were the longest, yet shortest, 4 hours of my life. The happiest, yet saddest also. I was finally holding my son. I had waited 22 days for this to happen. But it would be the first and last time. Matthew I love you so much, and we miss you terribly. We had a very nice funeral for Matthew. Family and friends were terrific. After the gravesite ceremony we all let go of blue and white balloons and sent them to Matthew in Heaven. My sister was really a Godsend. She held back all her grieving during the service to get pictures for me. We have some really terrific shots of all the balloons floating off, just as I imagine Matthew floating off to the heavens.

Michael and Jennifer are doing fine. At first Jennifer thought maybe it was her fault because she was not happy about sharing her room, but now I think we have handled that. But I will be watching her closely. I do have Michael in therapy just to make sure he is ok. Being a teenager is hard enough. But losing a brother who was so loved makes everything turn upside down. Love and prayers are with Trevor who is still in the PICU fighting hard. He has many problems, but has Matthew, his roomy watching over him. Now the question is do we try for another miracle? Only time and God will answer this question.

Matthew's mom, Dawn Peterson (Missouri)