Sunday, May 31, 2015

May 31 - Dear Nicholas Sparks (Guest Blogger Gabriel Chicoine)

Dear Mr. Sparks,

At the 30th week of pregnancy, we found out our little daughter had an important deficiency in her thorax called Congenital Diaphragmatic Hernia (CDH) – (1 in 2500). The doctor’s prognosis gave us only a 20% chance that our daughter would survive. Even after that news we decided to follow through with the uphill battle and having to be at the hospital on a daily basis for meticulous follow ups on our baby’s development.

The bad news just kept coming, and we found out that Elizia was also having problems with her heart. The last two months of pregnancy where plagued with unbelievable ups and downs and the burden of the unknown. However, we were very well informed as to the nature of the problem and what type of treatment Elizia would need at birth. The most important thing we needed to understand was that the hole in her diaphragm was causing her vital organs (stomach, intestines, liver) to push against her rib cage and was preventing the normal development of the lungs. However, it was impossible to determine, until Elizia would be breathing on her own, what type of pulmonary tissue was in place to allow a real chance of survival.

On December 14 we were admitted to the hospital to induce labour. At 3 p.m. my extra-super, beautiful little girl was born, and her vital statistics were quite good considering her condition. Her chances of survival were then upgraded to 50%. The first treatments went so well that when they were ready to transfer her to CHEO, they gave us a 70% chance that Elizia would survive.

CHEO (Children’s Hospital of Eastern Ontario) - During the transfer from the General hospital to CHEO many complications where beginning to arise. Elizia’s pulmonary pressure began to rise and her prognosis was reverted back to the same as before the delivery. The goal in the first 8 to 10 days was to stabilize her pulmonary pressure while keeping a good blood pressure. Since only one lung was present in the echogram, we had to hope that it would be enough to allow future development after the operation. Many medications were administered to her through intravenous to help her get through the critical first few days. She needed to be hooked up to a special ventilator to help her breathe and supply enough air to maintain her vital statistics. One of the essential medications used to prevent her from fighting the ventilator was Pavulon. It would paralyze her and prevent her from suffering too much because she couldn’t breathe normally.

YOYO (ups and downs) - During her 9 days of life, Elizia was a living yoyo as many different levels were attained. The first was at her birth when she showed signs of improvement. Then the first down was when she was transferred to CHEO and was put on a special ventilator. On the second and third day her vitals improved greatly, but on the fourth and fifth things turned worse again. So much so that when an echogram was done on the Monday after her birth (the fifth day), the neonatologist noticed a deterioration of the pulmonary mass which diminished all hope. It was at that time that we realized our daughter would not win this fight. We were then told that if there were no improvements by Friday we would need to make a decision. After the terrible news, we needed to gently prepare our daughter for her journey towards the light. While we were preparing, our little Elizia had a week of great improvement to which point the doctors told us she would make it to the surgery. The surgery consisted of lowering all the organs stored in the thorax and repairing the hole in the diaphragm. The Thursday before the fateful day was the best Elizia had, we could definitely see some major progress.

The last day and the last moments - Around midnight, the doctors on hand were trying a maneuver in the hopes of lowering the O2 levels for the operation. This maneuver turned out to be Elizia’s final rites since her reaction to it considerably increased the pressure of her lungs. The doctors announced to us that that night would be critical and to be prepared for anything. Around 4 a.m. they informed us that Elizia had continued a downward spiral and they were trying to stabilize her but that it wasn’t working. All we could notice was the dwindling numbers of 02 and NO2. I will always remember the multiple critical moments and the decision that we had to inevitably make. The main neonatologist was called and upon arrival I cracked. I understood the end had come.



Many minutes later it was time to finally disconnect our little girl and to let her rest in peace. We were informed that when she was disconnected that she would only live a few minutes. And that is exactly what happened. We had just enough time for a final prayer and to sing her a song to accompany her through the passage of her soul. The four hours that followed were precious hours were Mommy held her daughter with love. The first steps of her grieving process.

Today the mourning continues its path, and I am filled with gratitude towards this Angel that was sent from heaven to help me grow and give me strength to realize my new potential. I will never regret anything. Having our Angel for 9 precious days has made me the happiest man in the world.

Everyone who was asked to assist in the final moments was called: family, friends and missionaries. The Elders had graciously blessed us and Elizia the day before not knowing that that she was in her final moments. The time had come to make sure the day would pass in peace, harmony and serenity to accompany our little Angel towards the light. We were told that Elizia would be brought into a private room where we could spend our last moments with her. She was placed on a special respirator that was used to keep her alive. The intensity was at its maximum in this room where Elizia would spend her last moments. Everyone was saying their goodbyes, and I was feeling great enlightenment mixed with great sadness. I felt I had the chance to help this little soul find enlightenment but at the same time my daughter was leaving me. I will never forget those magical moments.

Sincerely,
Elizia's dad, Gabriel Chicoine (Canada)

Saturday, May 30, 2015

May 30 - Dear Nicholas Sparks (Guest Blogger Colleen Blaylock)

Dear Mr. Sparks,

My son was diagnosed in utero at 27 weeks. As seems to be typical, this was picked up during a routine ultrasound exam. This was my eighth pregnancy. I had four girls and three boys - all healthy! So, you can imagine my excitement to learn that I was going to have another boy! I will never forget how fast that moment of joy turned to terror and in just a matter of seconds. The exam was taking so long that I became apprehensive. Then the technician called in a physician who explained the possibility of diaphragmatic hernia. I was sent to my Obstetrician's office immediately. There my doctor told me I would need to be followed by someone specializing in high-risk pregnancies. I was in the state of shock! I was so sad! I saw the specialist and he explained that the prognosis was grim. We were offered the option of going to California for the then experimental in utero surgery. At that time it had only been attempted four times; with no survivor's. I elected to go the conventional route. We consulted with the best pediatric surgeon and neonatologists. I saw a nutritionist to make sure that I was doing everything possible to help my baby. I had weekly ultrasound exams. Everything looked pretty stable until I reached 37 weeks. At that exam we found that all of my son's organs were now in the chest cavity. I was scheduled for induction the next morning. As is described by most everyone in our situation, I had a really difficult time forcing my baby out into the world knowing what he would face. At birth Zach didn't make a sound. He was immediately bagged and preparations for surgery were initiated. On the way to the O.R., Zach's lungs "blew". Chest tubes were inserted in the hallway. He was in surgery for about three hours. All went well. There was a healthy right lung, but the left lung was very small and malformed. A lobectomy was necessary. Zach was very sick those first few weeks. It became very difficult to find I.V. sites. Sometimes they would try for hours. This broke my heart! There was a moment of levity though. My seven little ones at home had made a tape recording for Zach. On it they sang to him. When the nurses would play this tape, Zach's vital signs would stabilize. Apparently he was soothed by the familiar voices he had heard in the womb. However, they had to quit playing the tape, because the tiny "preemie" in the next bed would become hypertensive when she heard the tape! I often thought about the fact that the "world" behind the NICU doors is one that most people will never know anything about. To see babies fighting for their life each and every day is so difficult. Then there are the worst days, when someone with whom you have been comparing "notes" daily looses their beloved child. Zach's hernia was very severe, yet his course of recovery went quite well. He was intubated for three weeks. ECMO was not in use at this time, so thankfully we didn't have that issue to deal with. Finally at three weeks, when Zach was ex-tubated, I was allowed to hold him. I have felt the strange guilt expressed by others because the moment was not the joyous experience I'd anticipated. I was terrified that I would hurt him or dislodge a tube. After a month in NICU, Zach was transferred to a level two nursery. Here the challenge was to get him to feed. He had an oral aversion. Also, because he breathed in excess of 60 times a minute, Zach was too exhausted to nurse. So, we continued the NG feeds. After a month of this, we were allowed to go home. This was not the joyous moment I had waited for either. I had to face the prospect of giving the NG feedings around the clock and administering all of the other medications as well. I was so scared! I knew of no one who had had such a condition. Every medical professional I spoke with told me that survivors of CDH are rare and that there is not a lot of helpful information. One doctor suggested that we would be kind of "writing the book". This was so frightening!

I was so determined to breast feed Zach, as I had his siblings. So, while I gave the NG feedings, I "pumped". I would coax Zach into nursing even while he was being tube fed. I hoped this would be comforting to him. Weight gain was painfully slow. Zach vomited after every feeding. All of these years I have felt so guilty about that. I thought that perhaps I had mismanaged the feedings. I was so relieved to learn that this is a common problem with CDH babies. Months passed, and Zach still had to be NG fed. I was so discouraged. Neither my pediatrician, nor any of the other doctor's I consulted could advise. Our GI doctor was supportive, but couldn't make a prognosis. When Zach started walking at nine months, his attachment to the pump for 12 hours a day became a real challenge.





I was very careful about exposing Zach to illness. For that reason, we kept him away from crowds for the first year. Despite the precautions, Zach was hospitalized a few times that first year. He had pneumonia, a collapsed lung and roto-virus. Zach was put on medication for reflux. He was given nebulizer treatments when necessary. All things considered though, Zach made an amazing recovery. Zach did not have any developmental delays, except for the feedings. Finally, when Zach was 18 months, our GI doctor suggested that she insert a "button", for feeding. I consulted with all the doctors and they were in agreement. However, when I asked the surgeon, he suggested we pull the NG tube and see what happens. To my surprise Zach gradually began to eat and to breast-feed. In fact, I couldn't wean him until he was 2 1/2.I have always wondered why we weren't advised to do this sooner. It relieves me to read of others who have faced the feeding dilemma for an extended time. Now at least I don't feel so guilty! Zach is now almost ten years old. His right lung did not grow to compensate for the hypoplastic left lung, as we had hoped. Never-the-less, Zach is in excellent health! He actually is the fastest runner in his class. He is amazing with a skateboard, surfboard and mountain bike. He is in all accelerated classes in school. He is the most incredible kid! I am so grateful!

Sincerely,
Zach's mom, Colleen Blaylock (Texas)

Friday, May 29, 2015

May 29 - Dear Nicholas Sparks (Guest Blogger Heather Campbell)

Dear Mr. Sparks,

My name is Heather Campbell and my beautiful baby boy Brady was born on July 14, 1999. My husband, Lee, had taken me to the doctor's office for my monthly check-up when I was about two months pregnant. He had decided that he wasn't going to go in this time because we had our daughter and son with us. I had had an ultrasound done about a week before this appointment and was really excited to hear the results. My doctor informed me that she thought that she had seen a problem with the baby and that she wanted me to go to a specialist in Columbus.

When I left her office, I was sick. I went out to the parking lot and waited for my husband to pick me up. I guess the funny part is that I had had some trouble with my other two children (medically) and had always told my husband that I was afraid to try to have another baby, because I knew in my heart that something would go wrong and that I would lose him. I don't know how I knew, I just did.

My husband and I went to see the specialist that my doctor had referred me to. While there, we were informed that it looked as if our son

had CDH. The specialist told me that to find out whether there were any other abnormalities, I should have an amnio done. We went to have the amnio done, and the doctor told me that if we could wait, he would tell me the results right away. We waited. He informed me that our son did indeed have CDH and that the likelihood that he would die from it was very good. He told me that I basically had two options...I could have an abortion, or I could deliver the baby and watch my son die. I am strongly against abortion, and I felt that if my son died, it wouldn't be because I had taken his life.

I should tell you that at no time during my pregnancy did any doctor tell me that I could look into having surgery to repair the damage while I was still pregnant. I was also never told that I could take steroids to help his lung development. I was given absolutely no information on his condition until after he was born.

On July 14, 1999, my son was born. My labor was induced on the 13th, and after it was discovered that there was no room for him in the NICU at Children's Hospital, my doctor decided to stop my labor and have me wait until the following morning to actually deliver.

I was told that my son wouldn't cry. They said that if he did, it would be very surprising. Well, he cried. I guess I filled myself with false hope. I thought, "Well, if they were wrong about that, then maybe they are wrong about everything else too." After Brady was born, I was taken to a room to recover in. They put me in a room in the maternity section, so that I could hear all of the babies cry and listen to all of the other mothers ooh and aah over their new children.

I waited for about an hour before I was taken down to see my baby. I couldn't stay long because it broke my heart to see him hooked to all of the machines. When I had decided that it was time for me to go, a nurse was wheeling me down the hall when one of the other nurses hollered, "Does she want to have him baptized? I really think that she should, because I don't see him lasting very long." I couldn't believe what I had heard. To this day, I don't know if he was ever baptized. I vaguely remember nodding my head yes and being taken back to my room.

The next day, I left. Brady had been taken across town to the Children's Hospital, and not knowing how long he would be here, I wanted to be with him.

He hung on for 11 days. He suffered through ECMO, chest tubes, edema, and Lord only knows how much pain. They say that there was no way he felt any pain, yet when I held his hand, he tightened his finger around my finger, when I rubbed his foot, he pulled away as if it tickled him. If he felt all of that, then how do they know that he couldn't feel any pain?

On July 25th, I was told that it was no use. He would never get any better, and he was just "using blood through the ECMO machine that could be used for a child that did have a chance."

I called my family and they made the two-hour drive to say their good-byes and to be with me and my husband. I still regret that I didn't spend any special time with him that day. I now know that I was putting off the inevitable. I knew that as long as I wasn't back there, they couldn't remove him from his machines. So I stayed away as long as possible.

When I finally did go, I sat down in a rocking chair, and they handed me my beautiful baby boy for the first and last time. I held him and talked to him. I told him how very much I loved him and that I was sorry that there was nothing that I could do for him. And then, I told him that it was okay. That he could go.

I felt my son die. I have no way of explaining it except to say that, when he left, I knew-- because he took a part of my heart with him. I felt the ache in my chest. I remember the nurse telling me that she had to check his heart rate using the stethoscope. I told her that she didn't have to, that he was gone. I handed my precious little angel to the nurse, and I walked out. I vaguely remember slumping against a wall in the waiting area outside of the NICU, being led outside and my mother-in-law handing me one of her anti-depressants. I can't really remember much after that.

Just last year, I was looking out my living room window, talking to my mother on the phone when a white hearse drove past. I told my mom that I had never seen a white hearse before, and she said, "Honey, you followed a white hearse all the way to the cemetery the day we buried Brady. You were right behind it. Don't you remember?" No, I didn't. Like I said, I don't remember anything about it. All I remember is the feeling of my boy squeezing my finger right after I told him he could let go, and the feeling of him leaving.

Sincerely,
Brady's mom, Heather Campbell (Ohio)

Thursday, May 28, 2015

May 28 - Dear Nicholas Sparks (Guest Blogger Jennifer Blair)

Dear Mr. Sparks,

I remember the day I found out that our baby had a diaphragmatic hernia. I had never heard of it. I found the CHERUBS website and cried and cried and cried. I called my mom and told her more about this terrible birth defect and brought home information to my husband. We cried some more. Days passed, and each day I would go to work and read more stories off the CHERUBS website. It upset me so much, but I wanted to find out all the information I could so that we would be prepared. I finally came to the conclusion that it was not going to do any good for me to be miserable for the next four months. My family and I prayed a lot and hoped for the best. I remember thinking that one day I was going to have a good story to put on the website.

Well, it has been 18 months, and I am finally writing Caitlin's story, and it is a good story.

My husband and I had tried to get pregnant for a year and a half before we finally got good news on November 5, 1999, that I was pregnant. We were so excited and our parents were on cloud 9 since this would be the first grandbaby. The months went by and I felt wonderful. I went to the doctor for my five-month checkup, and on the way out, I remembered that they could do an ultrasound to determine the sex of the baby this month. Since the doctor didn't mention it, I decided to ask him if I could have an ultrasound done. He said I could and an appointment was set up for March 2, 1999.

My husband and I, along with the two anxious grandmas, went to find out the sex of our little one. As the girl was doing the ultrasound, everything looked good, and she said it looked like we were going to have a baby girl. The grandmas had to leave, and Lee and I were enjoying watching our little girl moving around. About that time, the doctor came in, and he and the girl doing the ultrasound were looking at the screen and talking softly. Lee and I looked at each other and knew that something was odd.

The doctor told us that it looked like the stomach was up higher than it should be, and he wanted to send us to a specialist for a second opinion. He told us that it was hard to tell because she kept moving around. We were shocked, but we figured everything was fine, and he just couldn't see it right since she was so active.

That next week, I received some paperwork to bring with me when I saw the specialist. It was noted on the paperwork that their prognosis was that our baby had a diaphragmatic hernia. This is when I began finding all the information I could on this defect, but at the same time praying and hoping that the doctor was wrong. On March 9th, we went to Arnold Palmer Hospital, and it was confirmed. We were bombarded with information, and our roller coaster ride began. We were put in touch with a genetic counselor, neonatologist, pediatric surgeon and fetal specialist. Lee and I and our families were all in shock and we all cried a lot. I told myself that it was not going to do any good to cry and make myself sick for the next four months, so I put it in God's hands. He made our baby, and he has a reason for everything. We had a few church services on miracles and healing. This built my faith, and I gave it to God. People all over were praying, and that was all we could do.

On March 21, we saw our fetal specialist to have an amnio done. When the doctor came in, he asked me if I wanted to have an amnio done. I said, "Not really," and he said he would do an ultrasound and then we could talk about it. He kept saying head - normal, lip - normal, everything was normal, and we were so encouraged. Afterwards, he said everything else looked fine, and it was up to me to do the amnio. We decided not to do it, and we left with smiles on our faces. He was the first doctor to give us hope.

The months progressed and everything was going well. On June 5, 2000, Caitlin was born, one month before her due date. When she came out, she didn't cry, and I didn't get to hold her because they intubated her right away. They had prepared us for what she would look like the first time we got to see her. There were tubes everywhere, and she was so small at 4 1/2 pounds. One week after she was born, she had her first surgery to repair her diaphragm and put her organs back in place. She had her stomach, all of her intestines, her spleen and part of her liver up in her tiny chest. It was a miracle that she needed so little oxygen up until then. One of the nurses told us that after Caitlin was born, they put her by the ECMO machine because they thought she would need it, but she never did, thank the Lord!

The next few weeks were up and down, and Caitlin did not seem to be improving. She was still on the ventilator and had lots of tubes everywhere. She developed a condition called cylothorax, where a tear in her chest lining was allowing all of the fluid and nutrition that she received to come out of her chest tube. When Caitlin continued not to improve, the doctors decided that a hole in Caitlin's heart was the problem. We got to hold our little angel for the first time one month after she was born. I know the reason they let us hold her was because they didn't know if she would make it through the heart surgery. They repaired her heart and cylothorax on July 5th. She had two holes in her heart, a VSD and an ASD. The surgery was a success, and she began to improve. Slowly, the nurses started giving her milk through a tube and started decreasing her vent settings. After a lot of ups and downs, Caitlin had learned to breath on her own and drink her milk through a bottle. She came home on August 22, 2000. Caitlin was on oxygen and required lots of medications and breathing treatments three times a day. We know that it could have been a lot worse, and we thank God every day.

Caitlin is now 18 months old and is doing great. We still see several specialists quite often, and she will probably require surgery again to repair her curved spine. She has had three colds and done really well with the help of breathing treatments. Not a day goes by that we don't thank God for what he has done. Looking back, I know that God had a perfect plan, and he put so many people in the right place at the right time. I even think that he made her a feisty little redhead because he knew that she would have to fight to survive from day one. She is our "miracle," our angel from heaven.

Sincerely,
Caitlin's mom, Jennifer Blair (Florida)

Wednesday, May 27, 2015

May 27 - Dear Nicholas Sparks (Guest Blogger Dawn Brucher)

Dear Mr. Sparks,

I live in Phoenix AZ and am a 32 year old mother of 2 beautiful and healthy girls ages 4 and 2. In February of 1998 I learned that I was pregnant again, a big surprise, but a welcomed one. We were elated when we learned at 17 weeks that we would have a son and that he was healthy. The technician had a difficult time seeing all four chambers of our son's heart but said it was because he was asleep in a bad position and it was nothing to be concerned about. She said that we would see what the radiologist thought and if needed I could have a "freebie" ultrasound just to scan the heart. Two weeks later I saw my OB who said that the radiologist said everything looked great, no need for a follow-up ultrasound. I said well she said it would be free, we would like to take advantage of that, it would be "fun" to have another ultrasound.

She told me let's wait until your next visit in 4 weeks, we will see more. So at 23weeks I had my "for fun" ultrasound and my life would never be the same again. The technician lied to us and said everything looked great. The next week my OB's office called and said that the technician saw a shadow on the right side of the chest and was unable to view the babies stomach. She ordered a level 2 ultrasound. I got a hold of the second ultrasound report from the radiologist and was terrified. It reported that the abdomen measurement was lagging behind by 2 weeks. It stated that they were concerned about a large cyst in the chest, and the absence of a fluid filled stomach. They were also unable to get a good view of the heart.

We went in for the level 2 completely clueless. The technician told us our son had a congenital diaphragmatic hernia and believe it or not we were relieved. We thought oh it's just a hernia, no big deal. The cyst they saw was the stomach, just in the chest. CDH is caused by a defect in the diaphragm. It allows the abdominal contents to enter the chest and impede the growth of the lungs. The doctor came in and told us he had a 50-50 chance at surviving, we were devastated. I had an amniocentesis that day which came back normal.

The weeks that followed were pure hell. Specialist after specialist all with grim and bad news. We learned that son's hernia involved the liver stomach and bowel. The liver reduced his chance of survival to about 30%, but we never gave up. They were unsure if he also had Ventral Septal Heart Defect. He also had a 2 vessel umbilical cord. The pediatric cardiologist was unable to see any blood supply going to the left lung raising the possibility of severe hypoplasia (underdevelopment). We were told by doctor after doctor to terminate, we never considered this. But it made us realize just how grave our son's condition was.

I developed polyhydramnios, which is a bad sign for this condition. Polyhydramnios is excess amniotic fluid. Due to this condition I was induced at 36 weeks. Our son entered this world at 10:50pm on 10-15-98. He was placed on me with the cord still attached and then accessed by the neonatologist. She realized there was nothing that could be done for our precious son, and he later died in my arms. We later learned that his chest had bowel, spleen, colon, stomach, and liver inside it. His left lung was only 1.5 cm, too small to sustain life. I still get numb when I type died, it seems so real, and it is so real. I miss my precious boy and am thankful that I have so many pictures of my precious son and even some video. One day I hope to show my little girls their baby brother, the brother they so desperately wanted.

Thank you for reading our story.

Sincerely,
Nicholas' mom, Dawn Brucher (Arizona)

Tuesday, May 26, 2015

May 26 - Dear Nicholas Sparks (Guest Blogger Melissa Bentz)

Dear Mr. Sparks,

When my husband and I found out I was pregnant we were excited. We had a two year old son and hoped for a girl. I went through my whole pregnancy being sick almost constantly. But my doctor was not alarmed because the prenatal visits were normal. My insurance company would only cover ultrasounds when medically necessary, I never had one because my baby's heartbeat was normal. Finally the day arrives, three days after my due date, I go into labor and twelve hours later I gave birth to a beautiful baby girl. My doctor wipes her down and her little eyes open, look at me and she gives out a small cry. My heart leaps, we got our girl! The umbilical cord is cut and all of a sudden my doctor takes her over to the baby bed next to the wall that contains medical supplies. I look over to my husband and say that something is wrong with our baby. He reassures me and says that they're probably doing some of her reflex tests. Unsure if that was the case, I repeated myself to him three times. He shrugged his shoulders and we both focused on the commotion by our baby. All of a sudden I heard my doctor yell "Come on baby, BREATHE!" My whole world ended I thought I was dreaming. I started crying and tried pinching myself thinking I would wake up from this horrible dream. Intensive Care nurses rush in, take our baby and rush out. I can't remember much of the next two hours except for thinking how could this happen to us, we have a healthy son at home. Two hours later, a neonatologist and a pediatric surgeon walk into my birthing suite and sit next to my bed. They say that our baby has a severe left-sided diaphragmatic hernia. This is very serious and her chances of surviving are very slim. I went into shock. The doctors said there was nothing I did to cause this, but I laid there blaming myself. Doctors would come in and let us know how she was doing and were talking about transferring her to another hospital. Now Kaylee is seven hours old and being prepared to be flown to a more advanced hospital 675 miles away. They let us visit her before she leaves. Her small body laid there covered with tubes, wires, and her body shaking from the ventilator. This could not be the same baby I saw when I gave birth, this one was limp and did not make a sound. We baptized her in the Intensive Care Nursery, despite all my thoughts about why I was being punished. As Kaylee was being transferred, one of the doctors called us on the phone in my hospital room and explained a new gas they're trying on babies with small lungs. Because it is not FDA approved, I had to give permission to the doctors to give my daughter nitric oxide. Twenty-four hours after birth, Kaylee had surgery to correct her diaphragm. Kaylee stayed in their hospital for 24 days and was transferred back to our hometown hospital. She was taken off nitric oxide at 21-days-old, amazingly off of oxygen at 37-days-old, and came home at 69-days-old. Our worries for the next few months was to get Kaylee to eat and gain weight. Kaylee is now fifteen-months-old. She fought off five colds without any help from over the counter cold medicines, had a sinus infection, and now weighs over 17lbs. Eats table food and drinks 2% milk by mouth. She has no tubes and no monitors. We never had to admit Kaylee back into the hospital yet and sometimes find it hard to believe she was born with a defect. We had never heard of a diaphragmatic hernia until Kaylee was born. When we hear about it now, most of the stories are the same and are not as fortunate as ours. We hope our story can give some parents the hope that we have found through our misfortune. We now know God is by our side.

Sincerely,
Kaylee's mom, Melissa Bentz (South Dakota)

Monday, May 25, 2015

May 25 - Dear Nicholas Sparks (Guest Bloggers Kathy & Scott Browning)

Dear Mr. Sparks,

I had a happy, uneventful pregnancy until week 28, when my local OB doctor mentioned the he was concerned that I was measuring small. I wasn't too worried because small babies run in our family. At 31 weeks we went to the local hospital for an ultrasound so that my doctor could make sure that everything was okay, since he was worried about IUGR. Our lives seemed to fall apart that day when we were told that her heart was on the right side, that they couldn't find a diaphragm, and that her stomach and intestines were up in her chest cavity. A few days later, we were in Salt Lake City seeing a perinatologist that did another series of ultrasounds and other tests. It was on that day, January 5th, that we learned that she had a diaphragmatic hernia. Our doctor did an amniocentesis that day, and we were so relieved, 18 days later, to find out that her birth defect was not chromosomal related. The perinatologist was realistic but also optimistic, and we were convinced that after Anneliese was born, she would have surgery and be home in a few weeks. To us, there was no other outcome.

The local OB continued to care for me during my pregnancy, and I was supposed to move to Salt Lake City and stay at the Ronald McDonald house when my pregnancy progressed to a certain point. (Our local hospital here in Wyoming is not set up to deal with high- risk pregnancies.) At 34 1/2 weeks, I went in for a checkup and found out that I was 80% effaced-- time for us to head to Salt Lake City. We got home from the doctor’s office and packed up, then drove the 2 1/2 hours to the University of Utah Hospital. I didn't even think I was in labor yet, but 2 hours after we got to the hospital, my water broke. I was in a panic, thinking it was too early. They gave me one shot to help her lungs develop. They didn't want to stop the labor for fear of infection, and the following night, Anneliese was born. She was only 3 lbs. 5 oz., but she had these cute little chubby thighs, and to us looked perfect. They told us that the umbilical cord was short, but I still don't know why or if that is related to her low birth weight.

Prior to her birth, the NICU doctor had asked us if we wanted to hold her until she died or try to save her. There was no option for us-- we had to give her a chance! She made it through the delivery, and they were able to stabilize her. The next hurdle was to transport her down a long hallway to the NICU at Primary Children's Hospital. The doctor said she may not make it through the trip, but she did. She continued to be stable that night, and we visited her at about 2 a.m. after they had gotten her situated there. It was overwhelming, seeing our dear, sweet baby girl hooked up to IV's, life support, and a chest tube. The second night after she was born, she went downhill, and they told us she would probably not live through the night. That night, we (including my mom and dad) stood at her bedside while she was baptized. She surprised the medical staff again by getting better.

She had some more, smaller ups and downs, and a little over a week after she was born, her surgery was done. The surgeon had warned us that her defect was very large and because she was so small, she might not make it through the surgery. Her vitals went haywire whenever she was moved that they had to perform her surgery right there in the NICU. To everyone's surprise, she "sailed" through the surgery, and for four wonderful days afterwards, she did very well. The defect wasn't as large as they thought, and they were able to repair it without the use of a gortex patch, a very good sign! At that point, they were talking of starting to wean her off the ventilator. We were so happy, sitting next to her for hours, telling her of all the things we would do when we all came home together.

On days when she was doing well, we were able to cup our hand on her small head, and it was so comforting to her I think, since we couldn't hold her. It was definitely a comfort to us to be able to touch her like that. She was paralyzed with a drug called Pavulon the whole time, but sometimes she would try to open her eyes when I talked to her or move her head a little when the drug started to wear off. It would break my heart to see her making sucking motions with her mouth. I know she wanted to move so badly. I was constantly worried about her every second of every day, asking the nurses if she had been given her sedatives recently, was she being given enough painkiller, etc. I cherished the times I got to help change her diaper or put Vaseline on her little lips. One night, when she was doing really well, the nurse let me put baby lotion on her feet, legs, arms, and part of her back. Normally, she couldn't tolerate that much stimulation, but that night she did so well, and it was one of the happiest moments I had with her, being able to caress my baby girl that I loved so very much.

On the fifth morning after her surgery at 5 a.m., we received a call from the hospital that her oxygen saturations had fallen, and nothing they were doing was working to bring them back up again. We rushed to the hospital, and slowly she improved when they turned up the mean on her ventilator. (Turning up her support was a risk since it put so much pressure on her lungs, and could blow a hole in them, which is what happened a few days later.) Then she started having some major ups and downs, and they ended up putting a chest tube back in that they had taken out and an additional one because of the pnemothorax that had developed in both lungs. We were devastated when we found out that there were holes in both of her lungs, but we were still trying to be positive because we had been told that the lungs heal very well, that it was just a matter of time. One night her oxygen levels fell to 30% for just a few minutes, then came right back up to 95% when they repositioned her chest tube.

Her last day with us, she did excellently; all her vitals looked very good, but that night after the shift change, she went downhill. I knew in my heart, just by looking at her, that she didn't feel good and that it might be time. The doctors that were caring for her that night were wonderful, doing everything they could, but they also told us that it might be time for us to say goodbye. We sat with her all night, off and on, while they tried to make her better. At 3:00 a.m., I had her primary doctor paged, and he came in to be with us while she was taken off ventilator support. I held her while they took her off the support, the first time I was able to hold her in the 18 1/2 days of her life. My husband Scott and I took turns holding her in a quiet room while she died. Those were the happiest, the saddest, and most difficult moments of my entire life. My arms now feel so empty.

I just couldn't consent to an autopsy. I felt like her little body had already been through too much. We had a public funeral service and family and friends over to our house afterwards. We wanted everyone to celebrate with us the birth of our beautiful daughter Anneliese. We showed everyone pictures of her and continue to do so because we are so proud to have had her and wouldn't trade those 18 1/2 days with her for anything. Anneliese was a blessing and a gift from God. We love her and miss her so much.


Sincerely,
Anneliese's parents, Kathy & Scott Browning (Wyoming)

Sunday, May 24, 2015

May 24 - Dear Nicholas Sparks (Guest Blogger Kirsten Booth)

Dear Mr. Sparks,

Every time I look at Ben, all I can think is Lincoln and I must have done something right because God let our little boy live when the odds were against him. We were meant to be his parents and meant to take this long journey with him. I can't tell any of you how many times I've thanked God for him being born 10 days early, in room 10, being in labor for 10 hours on September 10th because if it were any other way, I don't think Dr. Oliver would have been at Shelby medical that day (children's hospital doctor) to be there to catch his X-ray and know exactly what was wrong and for being so blunt when we didn't need any sugar coating that our child may not make it in the air lifting to children's. I have nightmares of Lincoln asking "isn't he supposed to be crying?" And my nana saving the day by telling him that that only happens in movies to keep him calm (I was still in shock that I just pushed a baby out) and them rushing him to me for a split second holding his limp, purple, rag doll body and letting me kiss him and running out of the room with him, taking him away from us to the NICU at Shelby. When I wake up from those dreams, all I can do is cry and thank God for letting me have him in my arms today. My 6 month old survivor. Not knowing what's going to happen next day after day when we were at children's for 14 weeks. Nurse after nurse, they were all so wonderful and 2 especially that I wish I could have just taken home with me that made it their first priority to care for our little boy when we weren't able too. Without any of those doctors or nurses, we wouldn't have our miracle baby. And I'm thankful for all the friends we made who became our rocks while we were there. It really hits home when I see other people going through things with their children that could take them away and sometimes does. Then there are the people with their healthy kids, who don't understand what us, as parents to miracles, go through and put ourselves through just to make sure our babies stay happy and healthy as possible. For months every time I seen someone at the store with their babies with them, I wanted to cry and possibly hit them screaming "it's not safe for them to be out in this store, too many germs!" Then I had to remember, oh yeah, that's just mine who would be badly affected by all the bad germs. I'll tell you what, the saying "God doesn't put you through anything you can't handle" is a test. He will put you through the worst imaginable thing to ever happen to anybody and test you, have faith in him and you will make it, you will come out on top with your prize; don't put your faith in his hands & you might just make it, you might. Seeing your child fight for his life in such a small body, my case 5lbs and 8oz, has got to be the biggest test anybody can go through. Such innocence and wonder, your children are the strongest beings, they have so much will to keep going on, to stay in this world and learn more, "there has to be more than these lights and these beeping machines", there is. Home. I know I haven't done a lot of good things in the past, neither has Lincoln but God found our prayers worthy of the miracles he has given us since Benjamin was born. And I hope Ben grows up, un embarrassed of his scars because without those scars, he wouldn't be here today. I stopped asking "why us?" "What if this never happened, what if he was born healthy?" A long time ago. God made us realize that there is more to life, don't take ANYTHING for granted. There are bigger things. I am glad to say that I am the mother to someone so special, so beautiful, so strong. Things can get really hard but I would go through hell just to make sure my son is happy and as healthy as he can be. I pray to God that this doesn't happen to anybody I know in my lifetime, and if it does, I pray their child is as big as a miracle as Ben is. And for those that I met, who didn't get so lucky in that department, God gave you the ultimate test, bigger plans. While we don't understand why or what, time will only tell. All we have is time, the clock is ticking, counting down to something more than life knows. I cannot wait to see what God has in store for our son, to see why he let him live in our world. He was due on the day my grandma bow passed away the year before, he had the best angel there is talking to him in his dreams, coaching him to Lincoln and my arms. I love my right-sided diaphragmatic herniated, tube fed, living & breathing miracle and I love God.

Sincerely,
Kirsten Booth

Saturday, May 23, 2015

May 23 - Dear Nicholas Sparks (Guest Blogger Cary & Teresa Bracken)

Dear Mr. Sparks,

Madeline is our second daughter. We became pregnant shortly after giving birth to our first daughter Sophia. Sophia was a full term stillborn who was such a special part of our lives. When we lost her the desire to have another child never left us. As soon as the doctors told us it was okay to have another baby we tried and we got pregnant right away. The doctor watched us very closely since we lost Sophia. I had monthly ultrasounds with Maddie. My doctor chose to do Biophysical Profiles, which is a combination of ultrasound and fetal non stress test, beginning at 30 weeks. Maddie got a 10/10 on her first two. Nothing could prepare us for the 32 week BPP. She got a 4/10. She only made one movement with one of her feet. At first when we looked at the ultrasound machine the only sign of life she had was a heartbeat. She was so lethargic. The ultrasound tech and nurse hooked me up to the fetal non stress test which was non-reactive. My doctor put me in the hospital immediately for continuous monitoring. Maddie showed no signs of improvement. My doctor came in on August 27, 1998 and told my husband and I that he would be doing an emergency C-section that evening. He wanted to get another dose of the steroid in to help her lungs develop.

Nothing could prepare us for the delivery. She was barely alive when they delivered her. She got a 1 on her apgar. Her heart was barely beating. They had to immediately bag her to help her breath. No parent should have to witness this. My poor husband had to be helped to the floor because he almost fainted.


They gave me something to help me sleep after she was born. I thank God for this. I could not handle watching as they worked on her. They finally got her stable and were able to take her to the NICU unit. At this point they still didn't know what was wrong with her. Her stomach was distended. As she was in the NICU unit her stomach became more and more dark. It looked bruised. They took X-rays of her chest and stomach. They gave her medicine to help clear her lungs up. The next day my husband and I made the decision to have her moved from St Francis to Riley Hospital for Children. Since I had a C-section I stayed behind at St Francis. It was so hard watching them take her away. I wasn't sure if I would see her alive again. My husband went to Riley once they had her stable. The next morning the surgeon called my husband and told him they were taking Maddie to surgery. At this point they still didn't know what was wrong with her. After the surgery started it was about 10-15 minutes later that the surgeon came out to speak with my husband. He told Cary that he needed to sit down. He told Cary that Maddie had a left sided CDH. He also went onto tell him that her small intestine went up into the hole of the diaphragm. This caused the small intestine to completely die. He said that there was nothing that could be done to help Maddie and that the best thing for her would be to remove the vent and let her go. At this point my husband had to drive to come get me at St Francis. When he walked in the room his face said it all. We then rushed back to Riley where his family and my mother were waiting. We all went in as a family and said our good-byes. Everyone left, except our Priest, so that Cary and I could say our final good-byes. Once we did they removed the vent. Cary held her and by accident he moved her causing her to wake up. She opened one eye and looked straight at Cary and then passed away very peacefully. It was so sad yet so beautiful. The attached picture is the one where she is looking at her daddy, as she passed into Heaven!

Sincerely,
Cary & Teresa Bracken

Friday, May 22, 2015

May 22 - Dear Nicholas Sparks (Guest Blogger Jane Bell)

Dear Mr. Sparks,

This is a picture of my daughter Chella Jane Bell. She was diagnosed as having a diaphragmatic hernia when I was 37 weeks pregnant after a routine scan.

I was complaining of having really bad backaches and was sent for an ultrasound. I sensed there was something wrong as the radiologist spent quite a lot of time looking at the ultrasound. He fetched a colleague in to come and have a look at the ultrasound. All I kept saying was, "Is anything wrong?" I was on my own and got quite anxious. They fetched a consultant who told me that the baby had shadows around the heart, and they weren't sure what was wrong. It was a week before Christmas day. They made me an appointment for Christmas Eve for a detailed ultrasound. I came away from the hospital in tears. In a daze I rang my husband at work, crying, thinking there was something wrong with our baby's heart. The week went by very slowly not knowing what was wrong.

The day finally came around for my ultrasound where they found that our baby had a diaphragmatic hernia. I asked if they would be giving me a Caesarian, but they said no. While the baby was still inside my womb, it would be OK; the problem would be when it was born.

I was shown around the neonatal unit, all the Christmas decorations were up, the tiny babies in their incubators. I was due to deliver on the 4th of January 1988. I went into labour on Wednesday 6th of January 1988 at 9.30 at night. I didn't have a difficult labour-- just pethedine for the pain-- and Chella was born the following morning at 8.10, weighing 7 lbs 8 oz. I had a quick glance at her, and they took her away. The peadiatrician came to see me sometime after to tell me that she had been taken to the ICU. I eventually saw her when she was two and a half hours old. That same night at 7.30 she was operated on. We saw her again before she went down for surgery, then again around 11.00. She looked so sweet, even with the ventilator and all the tubes around her. She spent six days on the ICU, then came back up to the maternity ward with me. Everything was a success. She's now a 14-year-old with a very delicate scar on her left side of her tummy. She has one sister, age 12, and a brother, age 9.

Sincerely,
Chella's mom, Jane Bell (Great Britain)

Thursday, May 21, 2015

May 21 - Dear Nicholas Sparks (Guest Blogger Missy Borgen)

Dear Mr. Sparks,

Our sweet Aubrey Anne Borgen was born prematurely at 29 1/2wks on monday 8/6/2012 at 2:41am and passed away shortly after at 3:43am. So many of you have found us on facebook and shared your encouraging words and prayers and they mean so much to us.... We know that many have suffered the same outcome and know what we are feeling. We miss her so much and our hearts just ache to hold her one last time. We find peace knowing that she is in the loving arms of Christ and never has to feel pain or suffering that this life can bring. We never thought this would be the outcome for our sweet angel, we truly thought she would be a CDH survivor. She was so strong and held on for as long as she could, but the Lord wanted her and had different plans in store for her. We believe she had a purpose on this earth and in the 1 hour she was here was able to accomplish it.... Touching so many people's lives and allowing God's promise to be shown to so many people. She will forever be our sweet baby girl.... Our hearts will never be whole again until we meet again in Heaven. So happy for the time we got to hold her and take in her beauty.

Sincerely,
Aubrey's mom, Missy Borgen

Wednesday, May 20, 2015

May 20 - Dear Nicholas Sparks (Guest Blogger Denise Bean)

Dear Mr. Sparks,

I am writing this story from the bedside of my son Spencer Bean, who is diagnosed with CDH. Our story begins on April 13th when my husband and I went in for a level II ultrasound. We were thrilled to find out what we were having, is it a boy or a girl? However, our excitement quickly changed when they saw on the ultrasound our baby boy's heart was shifted to the right of his chest and his stomach and bowels were up in his chest as well. My husband and I were sick. I sobbed and was so afraid. The doctor said he had a 40% chance of survival. When we left the doctors that day we were numb, they gave us literature to read about the illness. My husband immediately got on the internet and began to research all options. That same day another mother's baby was diagnosed with CDH. From that day forward our grieving began. My husband was strong for me. At 23 weeks my husband and I flew to Philadelphia to see if we would qualify for in utero surgery. The date was May 5th. The day was full of ultrasounds, from having a fetal echo to an MRI, at the end of the day we met with Dr. Adzick and he said our baby did not qualify for in utero surgery. Our baby had a 1.25 LHR (.9 LHR chances of survival 0, 1.35 LHR chances of survival 70%). I was almost relieved to find out I did not qualify for such a surgery. For the next several months my time was busy at Dr.'s offices. I had level II ultrasounds every 2 weeks. At around 30 weeks my amniotic fluid was on the rise. The reason for that was Spencer was not swallowing fluid like he should because his stomach was in his chest. I also had several non-stress tests done just to make sure that Spencer was not under stress. My husband and I decided to have Spencer delivered at Iowa City, IA. After interviewing several doctors they seemed best qualified for our baby. At 34 weeks I started to go into labor. They put me into the hospital and put me on magnesium. I became so ill, not to mention afraid for Spencer. My goal was not to deliver him until at least 36 weeks. Well, Spencer decided he was ready to join our world at 35 weeks. My second premature baby. My delivery went smoothly. I had Spencer vaginally. All the doctors were present for immediate care. Spencer's honeymoon period was brief. He remained consistant therefore the surgeons decided to do surgery on day 3 of his life. His surgery lasted only an hour. They found he had his stomach, bowel, spleen, pancreas and small and large intestines in his chest. Spencer had a fairly large right lung and a compressed left lung. After surgery, Spencer remained on a high frequency vent. But the good news was he never required nitric oxide. We were so pleased. Surgery went well. One week after surgery, Spencer was put on a c-pap already. He was not on a high frequency vent or even a regular vent any longer. Spencer was being so strong. It seemed he was even stronger than his mother. I was so tired and stressed, not to mention worried. I missed my 20-month-old son so desperately. My heart just ached. On day 8 of Spencer's life they began feeding him, not by mouth, but a tube to the stomach. He was taking 80cc a day. Such a hungry guy. I also played music for him, that is, after he was taken off "PV" restriction. (PV restriction means you can not stimulate the baby in any way, no touching, no high level talking, in any way) It seems when you go through this you always are waiting for the next day to arrive because it is then you know you made it through one more day. Spencer was released from the hospital at 24 days old. I breastfed for 8 weeks. It was difficult the first few months. It seemed Spencer could not relax, he was very easily upset, hard to put at ease, they said it is because of what he went through. Spencer is 5½ months old now and weighs 17 lbs and loves to eat and laugh at his big brother. Remember that other mother who was diagnosed at the same time I was, his name was Gabriel, he passed away 3 beds away from my son Spencer while in the NICU. I can't help but to think part of Gabriel will live on in Spencer!

Each day I worry if I hear a cough or a sneeze, I automatically think Spencer is going to catch it and be put back in the hospital. But then again, anybody who ever is a mother knows the worry! We are blessed as is any parent who has the privilege of raising God's children. Remember this "our children are on loan from God!" So feel blessed with as little or as much time as you have with them, they are miracles even those that go on to become angels right away, like Gabriel.

Sincerely,
Spencer's mom, Denise Bean (Iowa)

Tuesday, May 19, 2015

May 19 - Dear Nicholas Sparks (Guest Blogger Debbie Blakley)

We found out we were expecting our 6th baby in September 2005. It was a very welcome surprise. The early days were difficult with nausea and tiredness. October when the nucal scan was done and the results looked fine. The sonographer couldn't see the baby's stomach on that scan but said at that stage it wasn't a problem as it was probably just empty, in hind site it was probably already in his chest. We decided not to have amnio as although I was 44 we wouldn't have taken any action anyway whatever the results showed. The pregnancy continued nicely and we were curious to find out if we were expecting a little boy or girl.

Our life changed forever on 23rd December when we went for the routine 21 week scan. At first the sonographer seemed to be struggling to get a good picture. She told us we were expecting another little boy which was great news. After about 20 minutes she told us she couldn't get a good picture of his heart due to his position and asked me to go for a walk to see if the baby would change position. At this stage we were both oblivious to anything being wrong. After 5 minutes we came back and she tried again. The scan was stopped and she said to us that our baby's heart and stomach were in the wrong position. I had read about someone having a congenital diaphragmatic hernia in the paper just 3 days before this and I immediately knew what she was talking about. We were devastated.

We went to see the consultant who told us more about the condition and said that sometimes it can be related to other genetic abnormalities but in our case he did feel it was an isolated defect as nothing else on the scan appeared to indicate any other problems. He said our baby had a 60-70% chance of survival. He did offer us amnio but we declined. He said we would be regularly monitored and arranged a whole series of meetings with the neonatal consultant, pediatric surgeon and many more scan appointments. We were then sent home with a follow up appointment.

On the way home we sent a message to all our friends so they all knew and then had to face our children who were wondering if they were having a brother or sister. It was so hard telling them this news but we wanted to be honest. One of them asked if the baby would die and we said to them it was a possibility but we were going to hope and pray that he would survive. Christmas was very hard. We just went through it like zombies trying to be happy for the children but devastated. I found CHERUBS on the internet and was very well supported throughout by CHERUBS-UK and CHERUBS members all over the world via the CHERUB'S listserv. We decided to name our baby son Joel ( strong willed ) Archie ( brave) Jed (beloved by the lord ) and Abel as Abel means breath and we knew this would be Joel's problem. I set about eating anything that helped lung development including lots of dark organic chocolate that contains lots of nitric oxide.

We attended all the various appointments waiting to hear someone say it would be alright which no one could say. They all said that CDH can be very unpredictable and you cannot predict how the lungs are developing. We had an echo cardiogram which showed Joel's heart was severely squashed over to the right of his chest but appeared normal in its development. Our friends and families all rallied around trying to be positive and many of my work colleagues who are in the medical professional talked to me about their experiences with this cruel defect. The scans indicated Joel was growing well and he grew a healthy head of hair. I gave up work a little earlier than planned and suffered badly with my pelvis. At about 28 weeks I developed polyhydramnios which I knew was a bad prognostic sign. I was offered an amnio reduction which I refused as I was scared it would start labour off and I had been told that the longer Joel stayed in me the better for him. I was also told a good birth weight would help. I did start getting tightenings and at 34 weeks had 2 steroid injections to help mature his lungs if he came early. The decision was made for induction at 38 and half weeks so everyone could be ready for our precious baby's entry into our world.

The induction went very well. My waters were broken and there was lots and lots of amniotic fluid. I wasn't allowed an epidural because of a clotting disorder I have and had decided I didn't want anything like pethidine that could affect his respirations although the doctors said it really wouldn't make a difference as Joel would be intubated straight away. So I decided to do it with just gas and air and Robbie Williams blasting down my walkman!!!!!!For me this was a challenge as I have a very low pain threshold. The syntocinon infusion was started after two hours and about an hour later Joel's heartbeat took a dip from which it didn't recover very quickly. I was put on the bed, told not to drink anything else, all jewelery etc removed in case the doctors decided to do a caesarean. The doctor examined me and put a fetal scalp clip on Joel's head to monitor him more accurately. Joel's heart beat recovered and the doctors decided he was fine and had probably just grabbed his cord!! After this scare my labour continued without anymore drama. I was looked after throughout by my friend Sarah who I trained as a midwife with. She is a wonderful person and was fantastic throughout. Joel finally made his entrance into our world at 20:12 hours weighing 8lbs 8oz and pink with an initial apgar score of 7 @ 1 minute. He was intubated immediately by the neonatal team. Joel was then briefly shown to me before being whisked off to the neonatal intensive care unit. He had one eye open and looked at me. To me he looked frightened and I gently stroked his cheek and told him not to worry it would all be okay. That moment sticks in my mind so vividly now, it was the only time I saw his eyes open.

David and Sarah went around to NICU about 15 minutes later and came back saying Joel was on the oscillator and was ok. By the time I got round there 30 minutes later the consultant said he was now also on nitric oxide and maximum ventilation and if we wanted to get him baptised we needed to do so now. He was very poorly. It was such devastating news. The chaplain came and with David and I at Joel's side along with the nurses Joel Archie Jed Abel was baptised. We were told they were taking it hour by hour and that they were in contact with great Ormond Street Children's Hospital with a view to transferring Joel their to go on ECMO. This is a special heart lung bypass machine that can sometimes help these babies. He had a brain scan which was normal and we were waiting for an echocardiogram too. We were asked to go back to our room as they had a new baby being admitted and parents are asked to leave the unit when this happens. The consultant also felt we needed the rest. She promised to come and get us if Joel's condition changed. We didn't sleep every time we heard footsteps we thought they were coming to us. I held Joel's photo all night. By 06.00hrs we could wait no longer and went round to the neonatal unit. Joel was the same but had suffered a right pneumothorax overnight and had a chest drain inserted. We were told they were going to try Joel on a conventional ventilator instead of the oscillator because he could not be transferred for ECMO on the oscillator. We were also told if he was transferred we would not be able to travel in the ambulance with him and they were very concerned he would die in the ambulance. Joel however could not maintain his oxygen levels on the conventional ventilator and became very blue so he was put back on the oscillator. We called our family and they brought our children Sam, Jessica, Joshua, Jacob and Ben up to see their baby brother it was very, very sad. As our families left they lifted Joel out of the incubator and for the first time I got to hold my precious son. He was so beautiful. He laid on our laps for about 2 hours still attached to the ventilator. We cuddled and kissed him, we told him we loved him so much and we also told him that we understood if he couldn't fight anymore. We wanted him so much to stay with us but we told him that we understood if he couldn't stay. It was the hardest thing we have ever done. Joel's heart was slowing down all the time. Although they were still trying to save him nothing they did was making any difference. Joel's nurse went for a very quick break and left another nurse with us. When she came back Joel suddenly started having ectopic heartbeats and his nurse said this was very significant and removed his ventilator tube so we could hug our beautiful little boy close as he died. At 14.00 hours our precious little boy left us. It was the worst moment of my life. Just 17 hours, 48 minutes after our beautiful baby entered this world he left us again. We sat with Joel in the neonatal unit for a while then we went to a bedroom and waited while all Joel's tubes etc were removed. He was brought to us very quickly and we spent a very special 5½ hours with our son. We were able to bath him, dress him, and take hair cuttings, hand and foot prints and lots and lots of photos. It was very, very special. It was so hard to leave him there. Just 36 hours after we had left home we arrived back empty after having given birth too and lost our beautiful son. The following days passed in a blur. Friends and family took over the cooking and looked after us.

Joel came home to us the night before his funeral. It was lovely having him home here surrounded by his family. We had all put things in his coffin such as photos, letters, little trinkets and a bible. His coffin was tiny, white with coloured balloons over it. Joel's funeral was lovely. Many people came and we had a lovely service at our Methodist Church. David carried Joel in to Tears in Heaven and we both read poems. David read "I'll be there" and I read "In a baby castle". We had music by Keane Bend and Break and you'll be in my heart by Phil Collins. All the words were so relevant. Judith read a Child's angel and Sarah read Gods Loan. We left the church to Robbie Williams Better Man, the same song that was playing when Joel entered this world.

We choose a beautiful cemetery near where we live for Joel to be buried. It is like a big garden and has many beautiful trees and flowers. The birds are always singing there. As he was laid to rest the minister said a very special verse from the bible that had given me lots if hope when I was pregnant.

For I know the plans I have for you declared the Lord. Plans not to harm you but to prosper you, plans for hope and for a future. Jeremiah 29.11

It was very special

We had chosen not to have a post mortem but recently went back to meet the consultant. Joel's blood gases had never been normal and she felt he had lung hypoplasia along with the effects of the CDH. This is a devastating defect

We miss our special little boy so, so much. Our lives will never be the same and this little boy although with us for such a short time had made a huge impact on our lives.

Sincerely,
Joel's mom, Debbie Blakley (Great Britain)

Monday, May 18, 2015

May 18 - Dear Nicholas Sparks (Guest Blogger Vicki Holloway)

Dear Mr. Sparks,

We became pregnant with our first child in October 1999. The pregnancy went along normally until Feb. 24, 2000, when during our routine prenatal ultrasound at 19 weeks, our baby was surprisingly diagnosed with a congenital diaphragmatic hernia. The doctors at the IWK Health Center in Halifax, N.S told us that there was a 50/50 chance of survival. An amniocentesis was performed to rule out any chromosomal abnormalities, and our results were normal. From that point on we had regular ultrasounds usually every 2-3 weeks. The doctors were concerned that because the heart was moved to the right side of the chest, there was the possibility that the major vessels to the heart would become too distended and a blockage would occur causing the baby's heart to fail. Fortunately, this did not occur. By all accounts, our baby was developing at a normal rate, and at 28 weeks I was given two steroid injections to help the baby's lungs develop.

On June 6, 2000, during a routine prenatal visit, my doctor discovered that my blood pressure was elevated. I was hospitalized overnight and then placed on bed rest at home. To our surprise, I went into premature labor on the morning of June 10, 2000. Owen was born vaginally at 4:41 p.m., six weeks early and had an initial Apgar score of 2. Owen weighed 6 pounds 2 ounces and was 19 inches long. He was immediately placed on an oscillating ventilator and kept "paralyzed" until a few days after the surgery. The doctors explained that the repair would take place when Owen was more stable, preferably moved to a conventional ventilator and off nitric oxide. Owen remained unstable and on the oscillating ventilator for several days. Finally his doctors decided to go ahead with the repair while still on the oscillating ventilator and nitric oxide. The conditions were not ideal, but they felt this was his best chance. Owen did very well during the surgery on June 16, 2000. The defect was a lot larger than expected, with his stomach, spleen, bowel, and his intestines herniated into his left chest cavity. A Gore-Tex patch was placed to repair the opening and replace the missing left side of his diaphragm. Owen remained very stable during the 3-hour surgery and actually came out of the surgery on less oxygen than he went in on. Two days later he was taken off the nitric oxide and moved to a conventional ventilator. He was extubated on July 4, 2000, and was started on small bottle feeds of breast milk the next day. Once his feedings increased substantially, he was allowed to try breastfeeding. Owen fed well, gained weight and was released from the special care nursery on July 17, 2000. We brought Owen home two days before his due date!

The next few months were uneventful until Dec. 24, 2000, when Owen developed a high fever and was very listless. All he had was a virus, but because of his past history, a chest x-ray was taken and a loop of bowel was seen in his left chest cavity. His "patch" had begun to separate from the chest wall, allowing a part of the bowel to reherniate. Luckily for Owen, this was discovered before he began to show any symptoms of a strangulated bowel that would have required emergency surgery. A second repair was performed on Dec. 28, 2000, and the surgery took almost six and half hours. Owen's smaller left lung did not tolerate the surgery well, and he came out of surgery in critical condition and back on a ventilator. Owen made another speedy recovery, was off the ventilator in 36 hrs, and came back home on Jan. 3, 2001.

Since his second surgery, Owen has been hospitalized several times for respiratory illnesses, and he has used both ventolin and pulmacort on and off since January. We are currently waiting for a consult with a respirologist to evaluate Owen's lung capacity and function. Also, shortly after his second surgery, Owen began to reflux regularly! He was given Zantac, and finally in June 2001, he was officially diagnosed with chronic severe gastroesophageal reflux after having a " barium swallow". He now takes 20mg of Losec regularly, and with some minor changes to his diet and schedule, his reflux has almost disappeared, except for the very occasional episode. Otherwise by all accounts, Owen seems to be developing normally. He is a very happy little boy, and we feel blessed and very lucky to have him! Hopefully the worst is behind him, and he will grow up without any memories of his early struggles, with only a few "cool" scars to remind him of how special he is!!



Written by Dominic's mom, Vicki Holloway (Florida)

Sunday, May 17, 2015

May 17 - Dear Nicholas Sparks

Dear Mr. Sparks,

When I got remarried 6 and a half years ago, there were no photos of my whole new family together.   Shane was missing.  Instead, there were photos of the bride (me), the groom, the groom's 2 boys and me holding a photo of my deceased son.  It was the best that we could do to have a photo of the whole family.  It was the only photos of all of us that we ever took together.

The wedding, my sisters took family photos with their families.  We all had professional beach photos of our families taken before the wedding at Corolla. 

Now that I'm getting divorced again, I have to take down the family photos of my soon-to-be-ex-husband and his kids.   I lost another family.  

So I thought.

But I didn't really.  I still have the same family that I had before I remarried - me and my son's memory.  

No it's not a warm and fuzzy idea of family.  But it is my family.  And I am still Shane's mom and he will always be my son and my life will always include his memory.  This is what CDH did.

So my friend, Laura, (who lost her nephew to CDH) and I took off for Wilmington one Sunday and along with catching some sun and much needed beach time for the soul, Laura took new photos of me and my son.









These now hang on my living room wall next to the photos of the rest of my family. 

This is my family.  And I am ok with that.






Sincerely,

Dawn M. Torrence
Forever Shane's Mom

Saturday, May 16, 2015

May 16 - Dear Nicholas Sparks (Guest Blogger Onno Zwart)

Dear Mr. Sparks,

As an introduction of myself... well where to start... Let me start at the present. I'm a bit like Dawn, busy up to my eyebrows keeping the Dutch support group going and growing, trying to reach as many people as I can involved with CDH. In the mean time I have a job too, to keep my family supported. Married, two healthy children, a boy, 4 1/2 and a girl, 1 1/2. At first sight a very happy family.

Our first encounter with CHD ( as we call it- and looks better in typing also) was in 1990. While in the hospital to make a routine echo to establish the duration of the pregnancy, the dr. did not trust what she saw and sent us to a university-hospital for a second opinion. Yes, you guessed right. Both hospitals advised to end the pregnancy (at about 25 weeks). At that time we were completely blank and we let ourselves be lead by the advice from both hospitals. We had a beautiful little girl and named her Aagje. We never saw her eyes, too shy to ask if we could look, or too reserved to take a look at everything. Having your first baby is one thing, having your first stillborn is yet another. Doctors said, after some genetic counseling, that something like this was so unlikely to happen, that it was never to happen to us again.

So after unbelief, grief, sorrow, anger, we started to find out more about CHD. To our astonishment we found a medical studybook which contained a chapter on hernia repair... our mouths fell open. So there would have been another option for our little girl and they never told us. But there was no way of turning back the clock. No way of knowing what would or could have happened. A year went by and about the time our daughter was born a new live was starting to grow. Yet again we were not sure when this little life started, and the whole history repeated.

And the WHOLE history repeated, but this time we were determined to keep this baby, to let it show the world CHD could be defeated. We went to another university hospital, where a -at that time- new technique in Holland, ECMO, had started... Who knew, maybe we would need that. Our second daughter came, doctors fought for her life, but Babette was no more than 15 minutes with us. We learned a lot, we have had her home and many friends and family members came to see her. Frightened, not knowing what to expect, and then, after visiting Babette, astonished, happy almost, for so much beauty and peace they saw.

One can call it stupid, one can call it brave, but we wanted to have children of our own, so after a year and a half we had our first son. By that time we had started the support group and we became very well informed about CHD. When our son was born we had to fight the prejudice that 'it would be inherited by girls only'.

Having a healthy baby tends to keep you busy... sometimes drifting on pinkish clouds, sometimes worrying, little sleep... In a way our two girls got their place in the family and we tried to live on, getting the support group on the track, which by then had some 40 couples. So a year and a half later CHD was not the first thing we thought about when my wife was pregnant. Of course we went to the hospital, at 13 weeks gestation. An ultrasound did not exclude CHD!!! The dr. would be sure at 16 weeks... Three more weeks... Hell... Three long weeks in which we could not do a thing but wait. After that time we went back to the hospital to be certain of what it was... The world collapsed. We almost wrecked the machines. Again... Why we, why, why, why, what now, what to do? End the pregnancy? Carry on? We had done both, none of them with a result we were satisfied with. And there was no other alternative. After long talks with a psy we came to the conclusion that the only thing you have to live with your whole life is your feelings, not your ratio. And our feelings told us we wanted the child to show us -with medical assistance- what it was worth.

Weeks crept by, at 37 weeks we went to hospital and a large team was ready, even the professor, who wanted to see this one for himself. (he became one of our closest 'battle-companions') April 28 1995 Suze was born. And she was taken care of by almost everybody in hospital (seemed like that anyway). After fifteen minutes she survived her sister, after half an hour she was taken from the delivery-room to intensive care. In the evening, when she almost had died of a bloodpressure-drop, she was put on ECMO. For us, that looked like a success. Up and down she went, and our emotions with her. She was on ECMO for a long time. Nurses started to ignore us... like they were already giving up.

After almost three weeks the system became blocked by colonies of bacteria, so the membrane was exchanged. A few days later the whole system failed and a complete new machine replaced the old one. After that it went better, surgery was scheduled and hernia repair was done. Two days later she was off ECMO, on the ventilator. On may 28 suddenly her lungs went back to the stage they were in at the start of the ECMO. She could no longer take the oxygen from the machine, that was puffing like a steam-engine on high speed. There was no way back. Suze was at her end. In the evening we were taking out all the IV's and getting her ready to hold her in our arms for the first time and for the last.

It was special. All the children on the ICU were silent at that time. Where normally one could hear all kind of alarms there was a complete silence. As if the other children felt this was time to say goodbye to Suze.

She too stayed at our home for a few days. For the first time we had a funeral with more than us two attending. A few people, good friends and some relatives visited the hospital, they were invited to say goodbye and to be with us sending Suze on her long voyage.

Telling all this still brings tears to my eyes. I hope I am doing the right thing telling all this right away and not holding back a lot. While writing I thought about it a lot: Push the send button or not...Well, when you've read this I guess I did.

When people are asked what they would prefer, a baby boy or a girl, most of them would say I don't care as long as it is healthy. Maybe you can understand by now that I wanted a baby girl more than anything. In September 1996 we were blessed with our pride and joy Rozefien. A non-existing name, containing both a rose and the name of the academic childrens hospital, Sophia. For she flowered from the same hospital where our other girls died. Believe me, she has the spirit of all her sisters combined in one. A better monument for them is unthinkable.


Written by their dad, Onno Zwart (The Netherlands)

Friday, May 15, 2015

May 15 - Dear Nicholas Sparks (Guest Blogger Latoya Berrios)

Dear Mr. Sparks,

My husband and I were really excited to learn if at our eighteen week check if we were having our second boy or girl. We were pleased to find out that we were having a baby girl. The very next day our world changed. My OB/GYN wasn't his normal happy self and my heart dropped when he said something was wrong. He tried to explain what CDH was but we were frozen. The next following months were a series of learning as much as I could about the birth defect, an ultrasound twice or more a month, and an emotional rollercoaster.

I could tell by all the ultrasound pictures that not only were she already beautiful but she looked like her sister and father. I decided on naming her Jaila for no reason other than the fact that her siblings names started with J. I just wanted her to fit in with others.

A week before her scheduled birth, I felt like I was crazy from anxiety. I was feeling all that one person could feel at one time. I was happy and at the same time I was depressed. The day before the delivery, I ate at Ruby Tuesday and tried to stay calm because I didn't want the baby to stress out. My husband seemed nervous but okay at the same time. I know deep down he was feeling the same as I. I just hope that he was ready for the next day.



Five days later we had a memorial and she was even more beautiful in her death. I love so much and everyday is a struggle without my baby Jaila. The only thing that soothes the pain is knowing that one day I’ll see her again and God is perfect and makes no mistakes. Knowing Jaila in my tummy for nine months and the nine hours she was on earth I completely understand why God needed something so beautiful to take to heaven. He could brag about the flower he got from me. Clearly only heaven could handle something as beautiful as my cherub in heaven, Jaila Berrios.


The day of delivery was very exciting as if Santa was near and I was a four year old. I was calm considering what I knew was about to happen. I was rolled on the operating table about 12:45pm. Jaila was delivered at 1:18pm and immediately there were problems and everyone knew it. She couldn't cry, scream, or breathe. As she came out she looked at her father as if she was requesting his help and later he told me how helpless at that moment he had felt. About two hours later the nurse called me while I was in recovery for permission to place her on ECMO. I said yes but that cause more problems. Eventually her doctor called my husband and said he had done everything he could do and he didn't think she would make it through the night. My husband I made the decision that we didn't want her to suffer any longer and we pulled the plugs and held her until she died in our arms. Jaila wouldn't have survived for as long as she did if it wasn't for technology. She was pronounced dead at 10: 24pm and then came more cries from the parents. We continued to hold her until it got to hard so we gave her to the nurse.

Sincerely,
Jaila's mom, Latoya Berrios 

Thursday, May 14, 2015

May 14 - Dear Nicholas Sparks (Guest Bloggers Balistreri Family)

Dear Mr. Sparks,

Nathan was born in Evanston, Wyoming on August 6, 2004. He was 5 weeks early and required oxygen for a week after his birth. We had a very close call with him. He hadn't moved for 24 hours and the doctor did a stress test which didn't come out very well. He decided to do an ER C-section. Nathan was born with the cord wrapped around his body so tight, the doctor had a hard time cutting underneath it. My placenta was also dying. The doctor told our family that had we waited another 12 hours, we would have had a funeral to plan. Nathan is very special to us. We also found out that his heart isn't on the left side of his chest. After an evaluation in Salt Lake City, Utah, we found that his heart functioned normally and he was still a healthy baby!

Our son Nathan was diagnosed with a diaphragmatic hernia at the age of 7 months. I, his mom, was on vacation in California and Nathan became ill with Bronchialitis. After an ER room visit and x-ray, it was determined that he had a normal chest x-ray. They needed to transfer him to a children's hospital. He was hospitalized for 6 days and then released. We continued with his breathing treatments for about another week and half. During that time he continued to kind of struggle to breathe. We took him to a wonderful pediatrician in Anaheim, California. She was doing everything she knew how to do to treat this bronchialitis. She gave him the maximum amount of medication for the breathing treatments over 6 days. Well, she finally took an x-ray and found that he had NO intestines in his abdomen. When she came in to the room, I asked her to tell me what she thought it was. She told me that she probably didn't think I had heard of it but she suspected that it was a diaphragmatic hernia. She told me and I just started to cry and cry. My husband had a diaphragmatic hernia. His was discovered when he was just a year old. But he had serious complications and nearly died. 15 surgeries in 8 months. He had part of his intestines removed and has horrible scars all over his body. So I was just terrified.

The doctor and I made the decision to have him transported via ambulance to CHOC hospital in Orange, California. We waited for about 2 hours in the doctor's office and within an hour of making that decision, he went downhill. We had to put him on oxygen in the doctors office. Nathan was transferred to another hospital where he stayed for 10 days. He had surgery and everything went well. His lung did collapse and it is damaged until it regenerates in a few years. He spent two days in ICU and he was on a ventilator during that time. He also had a chest tube that was in for 5 days. Once the chest tube and the tube in his nose came out, He was a very happy baby! It was so nice to hold him after 5 days of not being able to do that. I learned a lot through this and I am so grateful for Nathan. My husband understood just a little bit of what his mother and father went through.

The stays at the hospital were very long. I had to do it without my husband. He was in Wyoming and I was in California. I had a few mental breakdowns there. Not being able to hold your son is such an empty and helpless feeling that only a parent can truly understand. It was so hard to see Nathan lying there hurting and not be able to fix him. No one wants to see their child suffer, but I do know that my husband and I are VERY fortunate to have this happen to him when he was older. We met a woman at the hospital Nathan stayed in and her son wasn't that fortunate and died only after 6 weeks of life. We have a healthy son who is doing quite well. Although he will be prone to respiratory illnesses until his lung regenerates, we are so GRATEFUL to have him with us.

Sincerely,
The Balistreri Family

Wednesday, May 13, 2015

May 13 - Dear Nicholas Sparks (Guest Blogger Susie Barbee)

Dear Mr. Sparks,

She was born September 27, 2001 and went to heaven November 3, 2001. We knew she had CDH when I was about 20 weeks pregnant. We received a lot of help and guidance from Madeline Bracken's parents. She is also a Cherub.

I was a parent of three boys. I always wanted a girl. I had 12 year old, 9 year old, and 1 year old boys. The older boys were from a previous marriage. When Chloe was born they were 13, 10 and 2. We had a hard time getting pregnant with Trent our 2 year old. But as soon as we thought about trying again I got pregnant. We thought it was a Godsend.

When we found out she was sick we had no idea what to expect. We were sent to every specialist. We were told that Riley Hospital for Children in Indianapolis, the town we live in, had a 70% success rate. They had a great ECMO program. As soon as she was born, via c-section due to having 3 others before, they took her straight to the children's hospital. She was 7lbs 11oz and 3 weeks early. I was diabetic so she was pretty big.

That night she crashed. I was in another hospital and was going crazy because I couldn't be there. They put her on ECMO. I got to go to the hospital two times the next day and she was doing well. The following day I left and went to the Ronald McDonald house so I could take the shuttle since I couldn't drive. My husband was going between the hospital, the other boys and work.

To make a long story short, she did great on ECMO, but as soon as they tried to take her off she crashed. She had her CDH surgery and all went well. She had a partial left lung and a whole right. They put everything back and it went well. But every time they tried to remove her from ECMO she crashed. She was the only baby in Riley Hospital that was put back on ECMO in the neck who survived.

Finally, after 24 days on ECMO, they figured out the CDH caused a coarctation of the aorta. She wasn't getting blood flow. They took her to surgery and did open heart surgery and replaced the narrowed aorta with a donor tissue. She did well. She did very well after that and they started lowering the ventilator. They decided to take her off the ECMO. She did well after a few days but then she wouldn't ventilate. They did another surgery to clean the right lung because she became so supportive to the ECMO.

Finally after 24 days on ECMO and three 3 surgeries her heart rate would start dropping. You couldn't even touch her. It was so heart breaking. Her little body was like a doll, stiff. She quit trying to cry and didn't open her little eyes. She was nicknamed ECMO Barbee. Our last name is Barbee.

We decided to take her off life support when the ventilator was on full speed and every time you got near her heart rate would drop. With all the crashes she had the risk of brain damage - not to mention she was not ventilating. We knew it was time. She fought a losing battle. I still feel if they had found the aorta issue earlier it would have made a difference, but they couldn't see it because of the cannulas from the ECMO. If she could have gotten off the ECMO earlier she would have been able to get her lungs stronger.

I just want parents to know that CDH can cause other problems. When the heart is displaced and goes back the arteries can narrow. I am sure her case has brought more attention to the doctors at Riley. My older son had surgery there a few years later and I ran into a nurse that was so very good to us and we became close. She said after that they had a big number of babies coming in with CDH and that the 70% rate went down. She went to another unit to work; she couldn't stand the heartbreak of the babies dying. In the 37 days we were there, there were 3 other babies come in. So 4 in 37 days. We live in Indiana and the other babies were from Indiana also. Two from Indianapolis, including Chloe, one from Terre Haute and another from a small town in southern Indiana. Madaline Bracken is also from Indianapolis.

We sent our baby girl to heaven on November 3, 2001. I tried to have another baby after talking to genetic specialists, but I couldn't get pregnant again. After 3 months of fertility treatments and being almost 39 I found out I was a full blown diabetic and I was going to be a grandma. My oldest son was going to be a daddy. He was 16. I decided to quit the fertility treatments and let it be in God's hands. February 2004 I had a grandson. That June, right before my 40th birthday, I decided it was time to accept my destiny. I got my tubes done and had Novasure treatment.

I have 3 great boys and a beautiful grandson who will be 2 in February. Chloe is always with us. I have her pictures, poems and angels all over my house. I think she is happy. God sent her to us for a reason!!

Sincerely,
Chloe's mom, Susie Barbee (Indiana)

Tuesday, May 12, 2015

May 12 - Dear Nicholas Sparks (Guest Writers Kathy & Scott Browning)

Dear Mr. Sparks,

I'd like to share a story written by Kathy & Scott Browning of Wyoming.

Sincerely,

Dawn M. Torrence Williamson
CHERUBS President and Founder


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I had a happy, uneventful pregnancy until week 28, when my local OB doctor mentioned the he was concerned that I was measuring small. I wasn't too worried because small babies run in our family. At 31 weeks we went to the local hospital for an ultrasound so that my doctor could make sure that everything was okay, since he was worried about IUGR. Our lives seemed to fall apart that day when we were told that her heart was on the right side, that they couldn't find a diaphragm, and that her stomach and intestines were up in her chest cavity. A few days later, we were in Salt Lake City seeing a perinatologist that did another series of ultrasounds and other tests. It was on that day, January 5th, that we learned that she had a diaphragmatic hernia. Our doctor did an amniocentesis that day, and we were so relieved, 18 days later, to find out that her birth defect was not chromosomal related. The perinatologist was realistic but also optimistic, and we were convinced that after Anneliese was born, she would have surgery and be home in a few weeks. To us, there was no other outcome.

The local OB continued to care for me during my pregnancy, and I was supposed to move to Salt Lake City and stay at the Ronald McDonald house when my pregnancy progressed to a certain point. (Our local hospital here in Wyoming is not set up to deal with high- risk pregnancies.) At 34 1/2 weeks, I went in for a checkup and found out that I was 80% effaced-- time for us to head to Salt Lake City. We got home from the doctor's office and packed up, then drove the 2 1/2 hours to the University of Utah Hospital. I didn't even think I was in labor yet, but 2 hours after we got to the hospital, my water broke. I was in a panic, thinking it was too early. They gave me one shot to help her lungs develop. They didn't want to stop the labor for fear of infection, and the following night, Anneliese was born. She was only 3 lbs. 5 oz., but she had these cute little chubby thighs, and to us looked perfect. They told us that the umbilical cord was short, but I still don't know why or if that is related to her low birth weight.

Prior to her birth, the NICU doctor had asked us if we wanted to hold her until she died or try to save her. There was no option for us-- we had to give her a chance! She made it through the delivery, and they were able to stabilize her. The next hurdle was to transport her down a long hallway to the NICU at Primary Children's Hospital. The doctor said she may not make it through the trip, but she did. She continued to be stable that night, and we visited her at about 2 a.m. after they had gotten her situated there. It was overwhelming, seeing our dear, sweet baby girl hooked up to IV's, life support, and a chest tube. The second night after she was born, she went downhill, and they told us she would probably not live through the night. That night, we (including my mom and dad) stood at her bedside while she was baptized. She surprised the medical staff again by getting better.

She had some more, smaller ups and downs, and a little over a week after she was born, her surgery was done. The surgeon had warned us that her defect was very large and because she was so small, she might not make it through the surgery. Her vitals went haywire whenever she was moved that they had to perform her surgery right there in the NICU. To everyone's surprise, she "sailed" through the surgery, and for four wonderful days afterwards, she did very well. The defect wasn't as large as they thought, and they were able to repair it without the use of a gortex patch, a very good sign! At that point, they were talking of starting to wean her off the ventilator. We were so happy, sitting next to her for hours, telling her of all the things we would do when we all came home together.

On days when she was doing well, we were able to cup our hand on her small head, and it was so comforting to her I think, since we couldn't hold her. It was definitely a comfort to us to be able to touch her like that. She was paralyzed with a drug called Pavulon the whole time, but sometimes she would try to open her eyes when I talked to her or move her head a little when the drug started to wear off. It would break my heart to see her making sucking motions with her mouth. I know she wanted to move so badly. I was constantly worried about her every second of every day, asking the nurses if she had been given her sedatives recently, was she being given enough painkiller, etc. I cherished the times I got to help change her diaper or put Vaseline on her little lips. One night, when she was doing really well, the nurse let me put baby lotion on her feet, legs, arms, and part of her back. Normally, she couldn't tolerate that much stimulation, but that night she did so well, and it was one of the happiest moments I had with her, being able to caress my baby girl that I loved so very much.

On the fifth morning after her surgery at 5 a.m., we received a call from the hospital that her oxygen saturations had fallen, and nothing they were doing was working to bring them back up again. We rushed to the hospital, and slowly she improved when they turned up the mean on her ventilator. (Turning up her support was a risk since it put so much pressure on her lungs, and could blow a hole in them, which is what happened a few days later.) Then she started having some major ups and downs, and they ended up putting a chest tube back in that they had taken out and an additional one because of the pnemothorax that had developed in both lungs. We were devastated when we found out that there were holes in both of her lungs, but we were still trying to be positive because we had been told that the lungs heal very well, that it was just a matter of time. One night her oxygen levels fell to 30% for just a few minutes, then came right back up to 95% when they repositioned her chest tube.

Her last day with us, she did excellently; all her vitals looked very good, but that night after the shift change, she went downhill. I knew in my heart, just by looking at her, that she didn't feel good and that it might be time. The doctors that were caring for her that night were wonderful, doing everything they could, but they also told us that it might be time for us to say goodbye. We sat with her all night, off and on, while they tried to make her better. At 3:00 a.m., I had her primary doctor paged, and he came in to be with us while she was taken off ventilator support. I held her while they took her off the support, the first time I was able to hold her in the 18 1/2 days of her life. My husband Scott and I took turns holding her in a quiet room while she died. Those were the happiest, the saddest, and most difficult moments of my entire life. My arms now feel so empty.

I just couldn't consent to an autopsy. I felt like her little body had already been through too much. We had a public funeral service and family and friends over to our house afterwards. We wanted everyone to celebrate with us the birth of our beautiful daughter Anneliese. We showed everyone pictures of her and continue to do so because we are so proud to have had her and wouldn't trade those 18 1/2 days with her for anything. Anneliese was a blessing and a gift from God. We love her and miss her so much.

Written by Anneliese's parents, Kathy & Scott Browning (Wyoming)
2001