July 18 - Dear Nicholas Sparks (Guest Blogger Jeannie Collett)

Dear Mr. Sparks,

I was told 5 and a half months into my pregnancy that my child's heart was missing one chamber. Well at 7 months and many doctors later and a lot of high-tech ultrasounds (Doppler) we knew that I had a CDH baby and I met with a neonatologist and he told me that the mortally rate for CDH babies was 96% and in his own words "I'm sorry Ms. Collett, but most CDH babies never live to see the light outside the delivery room". I think I cried enough to fill the ocean from that point on. I developed toxemia poisoning at 7 and a half months and was hospitalized at 8 months; strict bed rest up once daily 30 minutes in a wheelchair until deliver! I had three amnios to check for lung maturity-No lung maturity. Fetal distress set in and well delivery day came quickly by a C-section on Sept 3, 1992. Wow I've never seen so many people fit into one small room! At 6:59 am Daniel was born and my husband was told to leave the room and everyone was running around. My doctor came over while I was being stitched up and said "Jeannie, Daniel isn't doing well. He is now intubated and not doing well, he was taken away being bagged faster than I could imagine anyone pumping". I only saw the top of his head. Four and a half hours later Daniel was brought to my recovery room to say goodbye. I was able to touch his tiny fingers and tell him how much I loved him and to be strong. Then he was taken 26 miles away by Angel II Transport to Egleston Children's Hospital. I was called 2 hours later only to be told his condition was going down hill and he for sure had a right-sided CDH. The doctor then explained that the last resort was ECMO but he wasn't sure Daniel could qualify for it but he explained it to me and told me the risks involved and how experimental this was. I gave my permission for any and all intervention nessacery to save his life. I was called 5 hours later and told ECMO was started and his condition went way down hill. Up and down for six and half days. After 4 days I finally was able to see and count my baby's fingers and toes. I cried and cried, he didn't even look like a baby. He looked like something from a sci-fi movie. I was so scared, I was told not to talk or stimulate him; let him rest up for the operation. His eyes finally opend at 9 days of age. September 17th at 14 days old; time for surgery. Wow, he came up after surgery 9 and a half hours later on lower vent settings than before the surgery! More ups and downs, infection set in. Talk about a scary feeling. There was a lot of talk about what to do with him-his reflux kicked in and everything was upside down! By the grace of God he pulled through-I was able to hold him for the first time at 23 days old. I finally felt like a mother. At age 2 months, 21 days, Daniel was taken off the vent and put on oxygen via nasal cannula which he was to come home on. He started being fed 1cc per hour and switched formula 5 times before we hooked up with Pregestimil. We came home on Dec. 3rd with 3lpm of oxygen, a NG-tube, pulse ox, apnea monitor, and 13 types of meds and aerosols every 3 hours. A lot of work. We were home 6 hours and admitted to Scottish Rite with RSV. Back on the vent for 2 months. Home 14 hours, admitted for Roto-virus. Home 3 weeks, admitted back with respiratory distress (in for 5 weeks). Back and forth for 15 months. Lots of doctors appointment, ENT, GI, Pediatrics, Pulmonary, Surgery, Speech, PT, OT, etc. Frequent ER visits, admissions. We were off NG feedings which was a true blessing from reflux at age 2 years 1 month. We were off the apnea monitor at 2 years 3 months. Off the oxygen at 2 years 10 months. We still have the pulse ox and use it now and then when he gets worked up! Now age 3 year 6 months, we haven't been hospitalized in almost 2 years. Thank you, Lord. Daniel is healthy and happy. He is down to 2 meds per day, no physical therapy, speech, etc. He uses the pulse ox through the night. He runs, talks, counts, etc. A normal 3 and a half year old. No one really knows what the future holds. The doctors predicted surgery before age 2 again for the gortex patch repair. It hasn't happened yet. Thank God. I learned a long time ago that it takes a special person to be given a CDH child.

Sincerely,
Daniel's mom, Jeannie Collett (Georgia)

July 17 - Dear Nicholas Sparks (Guest Blogger Jennifer Jackson)

Dear Mr. Sparks,

I was 19 weeks pregnant with a boy when I found out he had Diaphragmatic Hernia. When I had my 19 week scan, they said it was on the left-hand side, and when he was born they would have to operate to move it down. They told us there was an 80% chance he would make it. So we continued with the pregnancy.

I went into labour on the July 13, 2004 and went to King Edward Memorial Hospital. They told me to delivery natural to increase his chances of living, but I had to have a caesarean for fetal distress. When he was born they took him up to intensive care and put him on oxygen to help his lungs. Then they did an ultrasound and found that he had Diaphragmatic Hernia on both sides, and he also had hypoplastic left heart and anal atresia. So with all his problems he had no chance of survival. He lasted eight hours and then he passed away.

After what happened it took along time to get over it. It took me a while to even think about having sex again. Then we sat down and discussed if we should try again or not. We gave it one more shot. Now we have a 4-month-old, healthy baby boy. We are really happy. He will never replace the one we lost, but we were pleased to know we have a healthy, happy baby after being told we had a 1 in 4 (25%) chance of this happening again.

We also have a healthy 3-year-old girl, and she loves her brother. The hardest thing will be to tell them both that they have a brother and he passed on.

We called him Isaac. He will be in our hearts and our memories forever.

Sincerely,
Isaac's mom, Jennifer Jackson (Australia)

July 16 - Dear Nicholas Sparks (Guest Blogger Dawn Collins)

Dear Mr. Sparks,

Our journey, this place that fate, or rather the hand of God, had brought us to began on March 21. We learned that we were expecting our first child, an unplanned but unprevented surprise. We felt fortunate to receive this gift so easily as many of our friends were having difficulty conceiving, and outside of a scare at six weeks, assumed that this pregnancy would progress without event as most seem to.

That notion was interrupted when, at 14 weeks, a day of right-sided abdominal pain brought me to the Emergency Room, leading to surgery to remove my appendix. Many times I quipped, "It can't get any more exciting than this!" That idea, however, was soon to be changed too. At 18 weeks, I had an ultrasound to check on the baby as a follow-up to the surgery. We learned that day that chances were good we were to begin decorating and choosing names for a girl! We were asked to return in 4 weeks to "find out for sure", and also because they had difficulty seeing some parts of the baby. In retrospect, it is with much naivety that we believed this to simply be routine. I understand now that they were simply sparing us 4 weeks of worry and fear in the face of uncertainty.

We eagerly returned at 22 weeks, in anticipation of getting a better look at our little gift. We learned that day that we were indeed expecting a girl; we then learned in few words that our little girl had a Congenital Diaphragmatic Hernia, meaning that she had many of her abdominal organs in her chest, pushing her heart to the right, and hampering her lung development. We were sent down to talk to our Midwife, who met us with a textbook, only able to give us that information as she had only dealt with this diagnosis once in her 20 years of practice. The technical terms explained that day meant little; what stood out however was a 50% survival rate.

I returned home that day to learn as much as I could, with the promise to my husband that I would not get swept up in the negative. We committed this right away to the Lord, believing that He would bless us, and heal our daughter in whatever way He chose. When we met with the Perinatolgist 2 days later, I had become an "expert" by way of the Internet. Twice that day, we were offered the "opportunity" to terminate the pregnancy. I told the Dr. that even if my baby had only a 50% chance, that chance was better than the chance she had if we aborted her, which seemed to go right over her head as she proceeded to tell us that we did not have much time to choose.

I was also learning to trust God and believe in Him for who He was.not based on my circumstances. Despite our highest aspirations and prayers of many others and ourselves we did not receive good news from the frequent ultrasounds. Our hopes were met with grim news that she seemed to have many organs in her chest.

Being a nurse and therefore understanding the need to be assertive, I continued learning about this birth defect, and soon found an out-of-state Dr. boasting a 92% survival rate. This was in comparison to the 65% survival rate at the local hospital we were referred to, as they had an ECMO (heart-lung bypass machine) available if needed. Survival rates for Congenital Diaphragmatic Hernia seem to be higher than what we were originally told, however do vary greatly from place to place. We began the push for insurance to cover a referral to meet with this Dr., with absolutely no support from my providers; I was treated as if I were crazy for even entertaining the idea to travel out-of-state for care, though to us, it was simply doing the best for our daughter and increasing her chances at a favorable outcome.

I was drained emotionally trying to make this situation work, and one night as I lay in bed, I felt that God was telling me I was pushing against a door that was not to open. And I felt the peace of God about this, which I could not understand. The very next morning, a Pediatrician I work with put me in touch with the best Pediatric Surgeon in our area, who gave me information on what they were doing with CDH at another hospital in our area. After speaking with him, I felt for the first time that she would really make it; that God's choice for healing would not be a heavenly one. We were never given this hospital as on option, simply because it is not covered by our insurance! At this facility, they were also doing better than 90%! Another Pediatrician at my clinic had a friend in OB who helped us with the referrals. Within 1 week, we had the approvals necessary from our insurance company. Now I understood God's plan, and realized He had a much broader view of our situation than we did; He knew where the best place would be for our daughter.

When I called to change my care over to the Perinatal group associated with this hospital, one of the Dr.'s called to discourage me from switching my care, and informed me that I would be forcing them to steal a case from their colleagues across town, at the other hospital. I told him simply that I was not concerned with the politics, and concerned obviously only with the care of my daughter and her chances for a good outcome. His tune quickly changed as he told me that they would look forward to accepting my case, and I was set up for a visit the next week.

Two weeks after my change of care, I went into pre-term labor, at 33 weeks. Remember, things cannot get any more exciting? This led to an admission to the hospital on bed rest and IV Magnesium Sulfate to stop contractions, as it is very important with this type of birth defect to "keep them in the oven" as long as possible. I was on bed rest for 4 weeks, and on November 10, despite our efforts, Sarah decided to make her grand entrance, only 3 weeks early and officially full-term. I had feared throughout the pregnancy that when the time came to push her out into this world, that I would not be able to. As long as she was in me, I was her life line; taking her from their meant forcing her into a world where she did not have enough lung to function. But when the time came, God again gave me peace. I knew I was in the right place, according to His plan. As I was nearing the end of labor, surrounded by about 15 professionals ready to care for Sarah, the song "Angels Among Us" came on the radio in the delivery room, and I knew that God had hand-picked these people to care for our little miracle.

There was no cry when she entered the world, as I had hoped there would be, and she was held up for me to see a brief moment before they went to work on her. That time was an eternity; I prayed fervently that God would breathe his breath of life into her little body. When she was stabilized, she was wheeled past me in the incubator on her way to the NICU. My husband was able to see her shortly after, and returned with news that they were pleased with how well she was doing. A couple hours after that, I was able to go see her. I was prepared for the worst, uncertain how I would react to seeing her hooked up to all of the machines. But when I saw her, all I saw was my Sarah, her determination, and God's strength keeping her alive.

Sarah did very well her first few days in the NICU, despite being put on the high-frequency ventilator for a few days. She was on Nitric Oxide to help with her Pulmonary Hypoplasia and Pulmonary Hypertension, two conditions that are pretty much a given with CDH. Sarah had surgery at 1 week of age to repair her defect, during which they removed her stomach, spleen, small intestines, much of her large intestines, and part of her liver from her chest cavity and put them back into her abdomen where they belonged. Sarah again required the high-frequency ventilator following surgery. She never did require ECMO, and I knew that as long as this was not mentioned to us, she was doing well.

I will never forget the morning a week or so after surgery when I came to find that her nurse Sue had put a little purple bow in her hair; this is one of the greatest gifts ever given to me. I knew that if my daughter was worth "dressing up", that she was going to make it. It was around this time, to my surprise that I got to hold Sarah for the first time. It was one of those questions that I never asked, because I didn't want to hear that it would be much longer than I could handle.and to my delight it was a lot sooner than I expected it would be! We would always hear from the nurses that "Sarah has an opinion". and I knew that this personality God had given her was getting her through. I also told her that we would have to work that out when she came home! Sarah continued to do better than expected and at 1 month of age was taken off of the ventilator and able to breathe on her own with the help of a small amount of Oxygen. The IV's and wires attached to her slowly disappeared. When she was just shy of 2 months, we were surprised one day to learn that we would shortly be taking her home!

Sarah is now 5 months old, and doing wonderful developmentally. She is now able to breathe well enough that she does not require Oxygen. Due to an oral aversion, Sarah has difficulties breastfeeding and taking the bottle, and receives most of her nutrition through a G-tube. Like many of the CDH families, we are constantly at battle with reflux. These small issues, though they teach us much patience, are very little compared to what we could be missing out on if we chose not to give her the chance at life that God ordained. There is not a day that goes by that it does not hit me that we are so lucky she is here. God has taught us many things on this journey, about our daughter, ourselves and most importantly about Him. There have been many hard times, many fears, and I know that these may continue. Someone said that courage is not the absence of fear, but the ability to go forth despite those fears. This is what God has given us. My heart melts at the beauty of the smiles glowing from Sarah's face, yet I know it is only a glimpse of the beauty God has shown us on this journey. We have been allowed to meet some wonderful people who are every day heroes.from other parents of CDH children who have also gone forth in courage to the NICU nurses who are truly God's angels here on earth. We have been challenged at every moment to grow and rely on God. This is a place you hope to never find yourself, but if you do, God will meet you there.

Sincerely,
Sarah's mom, Dawn Collins (Oklahoma)

July 15 - Dear Nicholas Sparks (Guest Blogger Angela Hutto)

Dear Mr. Sparks,

3 weeks ago, I never would have dreamed that I would be writing about the death of my little baby girl. We had all of the hopes and dreams of any other expectant couple. We had already been blessed with 2 healthy daughters. Rebecca who is now 5 1/2 and Myra who is 4. We decided to try again, in the hopes of maybe having a son. We knew our chances were 50/50 and agreed that another daughter would be just as good. A healthy baby was all that mattered. My husband was hesitant at first of even having another child. He said that we had 2 healthy children and we should not press our luck. I longed for a baby again. So with a little convincing, we headed toward the road of pregnancy. It only took a few months before I found that I was pregnant. My pregnancy was like a textbook case. I had my first and only ultrasound at 18 weeks. It was so exciting to see our baby moving around inside of me. I remember the tech's words so clearly. "Looks like a healthy baby-everything seems to be normal." She said that she was 70% sure that we were having another little girl, which was fine with my husband and me. I remember my drive home and how lucky I felt that we had gotten such a good report. When we got home we shared the news with all of our family. My girls were so excited about having a baby sister. My pregnancy progressed normally as the weeks went by. Occasionally I measured about a week or two more than my due date, which did not seem of any concern. At 35 weeks, I started having a lot of Braxton Hicks contractions and started passing some blood tinged mucous. I went to the doctor and was told that they would like for me to go at least another week before I had the baby. I was already starting to dilate. I received 2 doses of Brethine, which stopped the contractions and was sent back home. Two days later on Thursday night, I started having contractions again. We went to the hospital, thinking this was the day. I was 3cm dilated. The doctor still wanted me to go a little longer, so I received more Brethine and went back home. By Saturday night I started having hard contractions that were becoming very regular. I sat up for several hours until I could not stand it anymore. At 3:30a.m. we headed to the hospital. When we got there at 4a.m. I was already 5cm dilated. This was finally the day. My husband and I were excited at the thought of finally having our baby. Labor progressed quickly. The doctor broke my water and it was like a flood. He commented on how much amniotic fluid there was, but did not let on any signs of concern. I had my baby girl shortly after that. When she came out we immediately knew that something was wrong. They suctioned her nose and mouth but she still did not cry. I could feel my heart drop, and in my mind all I could do is pray "Please let my baby cry". The minutes seemed to pass like hours as they worked on my baby at my bedside. Finally they said that they were going to take her to the nursery where they could give her better care. They were gone for what seemed like hours. The doctor came in and told us that things did not look good and a short while later the pediatrician came in with the news that our daughter was gone. It felt like a knife go through my chest and rip something out. The emptiness is still there and I wonder now if it will ever be filled. We got to see our baby, but at the time I was so upset that I could not bear to hold her. We went home the next day and leaving the hospital without my baby was the hardest thing that I have ever had to do. I have shed so many tears, that at times I feel like I cannot cry anymore. Then out of nowhere they come again. We had a beautiful graveside funeral service for our Belle and we could not believe the outpouring of love from all of our family and friends. It has only been almost 2 weeks but it still seems like yesterday. Not a moment passes that I don't think about my baby and all the plans that we had made. I do find some comfort in knowing that Belle is in a much better place now where she will never know the pain and suffering of today's world. She is in God's protecting arms and I can look forward to seeing her again. Even though Belle's life was very short - she has taught me a valuable lesson. Life is precious and we should never take it for granted. The things that I often thought only happen to other people, can happen to me too. I will forever be touched by my little Belle, and will always cherish the short time that I got to know her.

Sincerely,
Angela Hutto (South Carolina)

July 14 - Dear Nicholas Sparks (Guest Blogger Sara Givent)

Dear Nicholas Sparks,

    In the summer of 2009 my life was changed forever by three (not so little) words, congenital diaphragmatic hernia or CDH. I had never heard of CDH, and apparently neither had my doctors.

    My husband and I went in for a routine anatomy ultrasound at 18 weeks pregnant. We had already had two perfect children, a boy and girl, so I convinced my husband that this time we shouldn’t find out the gender of the baby until the birth. Partway through the ultrasound the tech left to go get her supervisor, for a brief moment my heart stopped. I had been in this position before with my first pregnancy (it was my first ever ultrasound and I didn’t know that what I was seeing on the screen was missing a heartbeat until the tech brought in a supervisor who then explained that we had miscarried). But I pushed those fears aside quickly because that was the first thing I looked for at every ultrasound, and it was there beating strong. The tech came back with her superior and together they finished the all the measurements. Before we left, the tech asked if we were sure we didn’t want to know the gender of the baby. We assured her we wanted to be surprised, so she wrote it down and sealed it up for us, just in case.

    After our ultrasound we went upstairs to our doctors office. Dr. Mahlab entered the room and did not sugar coat it. “Your baby has congenital diaphragmatic hernia, it’s a condition where there is a hole in the diaphragm allowing the stomach contents into the chest. There is very little chance of survival.” My world stopped.  He couldn’t even tell us anything more about CDH, or possible outcomes. He didn’t know, he even spelled it wrong on the slip of paper he wrote out for us. Doctors at a major hospital, Dartmouth Hitchcock, didn’t know anything about the condition that was threatening to take my baby away. He then set up an appointment for us to see then geneticist  in one week, then left us to gather ourselves before we left. My husband and I cried together for a bit, then we opened the envelope. We were having a little girl.

    That afternoon we went home and broke the news to close family. Then like anyone facing so much uncertainty and devastation, I took to the internet to find some answers, or at least some information.  There wasn’t much to look through, plenty of doom and gloom, but then I found a group called CHERUBS. There were others out there that have been and are going through what we were going through! The odds weren’t great but 50% had a lot more hope than the doctors had given me. She had a chance.

    We had a slew of appointments and test with Dartmouth before we were finally able to be referred to Boston Children’s Hospital for a second opinion. Dartmouth made us wait until a couple months before our due date. They said that they wanted to have as much information available to see if it was a case that they would take on. Looking back now, I know I should have just gone around Dartmouth and talked directly to BCH, as they were surprised that Dart waited so long to refer. I’ll never forget how I felt that night we left Boston after a full day of appointments, ultrasounds, MRIs and consults. It was like a second wind, they were so positive and experienced with CDH. They had a survival rate of 90% at their hospital. Dr. Wilson had been working with CDH babies since the 80’s and he had an amazing passion for their care. Boston was it, we would have our baby- Mallory, at the Brigham hospital, and she would be immediately brought to the Children’s hospital via a bridge connecting the two. Now all we had to do, was monitor and wait.

    On January 4th 2010 we went down to Boston to be induced. That night as labor was progressing things took a turn, and Mallory was in distress. They began prepping me for a cesarean section, which was devastating. It meant on thing to me, it would be much longer before I could be cleared to go see Mallory after she was born and bought over to the children’s hospital. When we arrived in the operating room they decided to try one more time to deliver Mallory without c-section, and they succeeded.  They brought her over to my bedside so I could kiss her sweet little head, then brought her immediately over to the corner of the room to intubate her and prep for transport. My husband and I had decided that once she was born he was to stay by her side, so in a matter of minutes they were gone, and soon I was all alone in my hospital room. It was the most alone I have ever felt.

    Finally three hours later the nurses cleared me to go visit Mallory, my husband came back and wheeled me to the adjoining hospital. It was one of the hardest things to see. She was so tiny among all the tubes and wires and Ivs, and her little chest was rising and falling so fast. I couldn’t touch her, or even speak in more than a whisper or her stats would drop and monitor alarms would ring. This was the first day of her 192 day hospitalization. Everything was still so up in the air.

    On January 8th 2010 Mallory was put on ecmo (a heart and lung bypass) due to severe pulmonary hypertension. Then on January 9th while on ecmo Dr. Jason Smithers performed her repair surgery. They brought her intestine, spleen, stomach and liver down from her chest and cover the hole in her diaphragm with a gortex patch. Surgery went well, and things were pretty quiet for a while. On the 18th they were able to take Mallory off of ecmo.

    On January 23rd My husband and I were asleep one floor up in the parent sleep spaces, when we got a call at 4am. Mallory was crashing. Her oxygen levels were in the 20’s and her whole body was grey. She was given a 10% chance of making it through the day. I remember when it really sank in that she was dying. One of her nurses came over to me, and said “at any point if you want to hold her, you just say the word.” at this point we hadn’t gotten a chance to hold her yet, and now she was dying. I had to call my mother and try to get the words out of what was going on, and that she needed to get here as soon as possible to meet her grand daughter before it was to late. My husband got on the phone to our church,  soon my parents arrived, and all we could do was pray and wait. It was the most unreal day of my life, like a foggy dream. Finally around 3pm she came out of it. Her oxygen came back up and her skin regained color. It was a miracle. Even Dr. Wilson was amazed.

    On March 12th  2010 Mallory came of the ventilator for the first time. For the first time since her birth I got to hear her cry. She was put onto a cpap machine. Unfortunately eight hours later her stats dropped, and the decision was made to reintubate. Luckily Mallory’s nurse was able to let me hold her for the first time ever while the prepped. It was brief, and she was sedated, but I will never forget that moment. Ever. They were able to extubate her again to cpap on the 16th of march, this time for good. She stayed on cpap for two weeks before transitioning to oxygen canulas, which she kept until he was one and a half years old.

    In May of 2010 Mallory was able to move from the MSICU to a regular inpatient room. She had he second surgery in May as well. They put in a gtube and did a nissen fundoplication, because she had oral aversion from spending her first three months on sedation and paralyzers, and she was high risk for aspiration.

    On July 14th 2010 Mallory Miracle May Givent came home. It wasn’t easy, she came home on oxygen, a feeding pump, helmet to reshape her head, and a handful of meds to be given multiple times throughout the day and night. We had an in-home nurse, and physical, occupational and speech therapists came to the house until she turned three, then she began going to our local school for these services (she still receives all three to this day). Mallory’s most recent surgery was a rod fusion surgery for her scoliosis (quite common in CDH survivors) in April 2015. She has amblyopea as a result of all the medicines and sedatives from when she was a baby, so she is currently working on correcting that with glasses, although it looks like surgery might end up being her best option.

    After everything Mallory has been through, and will continue to have to deal with, she is the most amazing ray of sunshine I have ever met. We are so very blessed that she was able to pull through and come home with us.  There are so many that do not survive. This is why research and awareness are so important to me, and why the CDH community would truly appreciate your help in raising awareness. Thank you.

Sara Givent

July 13 - Dear Nicholas Sparks (Guest Blogger Anne-Marie Huffman)

Dear Mr. Sparks,

We have two beautiful boys, Benjamin and Jonathan. We learned that we were expecting when Jonathan was 8 months old. We learned at 20 weeks gestation that we were having a girl who had a Congenital Diaphragmatic Hernia (CDH). This came as quite a blow, especially after our son Jonathan had just been diagnosed and had surgery for neuroblastoma (cancer) just 3 weeks earlier. We were numb. We had an amniocentisis to check for genetic abnormalities, since her ultrasound showed a growth on her forehead. After a VERY LONG 10 days we found she was genetically normal. We had a visit to the Indiana University Medical Center and Riley Hospital for Children scheduled for us for February 15, when our son Jonathan was due to have his next CT scan.

The fifteenth was an overwhelming day, ending in a fetal MRI for mom, an ultrasound with the perinatologist and cardiologist, a meeting with Dr. Trautman (in neonatology) and a meeting with Dr. Deborah Billmire, who was to be Elizabeth's surgeon. We left completely exhausted, but very confident in Elizabeth's future doctors. Every question we had was answered in full (of course we always heard, "You never know until the baby's born").

We arrived back at IU to be induced on Monday, March 25, 2002. I was 38 weeks along. I received a pill to prepare my cervix, since I had not started to dilate. Labor began after about 6 hours, and that night I had some Nubane to allow me to rest a while. I woke up around 6:00 and knew I was in transition. There had been trouble finding Elizabeth's heartbeat all night, so I requested that they check her position now, since I was very near delivery. I had a great deal of fluid, due to the CDH, and Elizabeth had turned again to a breech position. I felt the urge to push and summoned the doctor. I ended up with general anesthesia. Elizabeth's feet were already in the cervix. She was born via c-section at 7:28 a.m. My husband, Steve followed Elizabeth as they tried to stabilize her at IU. They transported her to Riley through the tunnel where she arrived at 9:30 a.m. I was waking up in my room with Steve when Dr. Billmire called. She said Elizabeth's oxygen level was at 50% and asked if we wanted her to go on ECMO (Extra Corporeal Membrane Oxygenation). There was no alternative but death, so we agreed.

After the surgery to put Elizabeth on ECMO, I was able to see her. I had a LONG wheelchair ride through the tunnel to the NICU at Riley. Elizabeth was so beautiful. The growth on her forehead was just a hemangioma (birthmark that fades over time). We could not hold her or stimulate her much, due to the ECMO cannulas in her neck.

Six days later, Elizabeth would have surgery while on ECMO. She was not able to progress any further without it and needed more lung power. Her liver, intestines, spleen, and stomach were in her chest cavity and were keeping whatever left lung was there from expanding. We prayed there would be some lung on her left side to assist her larger, but smaller-than-normal right lung. The surgery went very well. Dr. Billmire went over what happened and that even though it went well, we still did not have enough evidence to show whether she could survive. Her lungs expanded and each day we checked her X-rays and blood gases to find evidence of progress. She soon seemed ready to be taken off of ECMO. After several days of weaning (up and down on the ECMO support level), she seemed to be doing very well at a low level.

On Friday, April 5, she was removed from ECMO. She seemed to be doing well at first, but that night was AWFUL. She seemed to have developed pulmonary hypertension. The cardiologist was summoned in at 10:30 p.m. to do an echocardiogram. I listened to a very sobering description of the implications of this problem. Basically, it was not easy to resolve in any short amount of time. I went back to our hotel to get some rest. At 1:30, Dr. Evan Kokoska called me and said that my daughter was doing very poorly. I asked how long she would last, and he said it could be several hours. I said a prayer for strength to accept God's will for us and left for Riley.

When I arrived, a very tired Dr. Kokoska and her nurse Mary Lynn, had done all they could think of. I sat down with Elizabeth and prayed and talked to her. About 20 minutes later, little drops of urine started dripping from her Foley, signaling that kidney function was resuming. Praise God! Elizabeth made a comeback and continued to progress all through the weekend. It was Sunday before I began to progress from the shock.

The week went well to begin with. Her paralysis was stopped Tuesday, and she started producing stools. She was allowed her first tube-feeding Wednesday night. I came back to the hospital, excited to see how it went. While she was keeping the milk down, her oxygen and blood pressure were not as steady. I went home and was in contact with Kelly, her nurse, every few hours. She called at 6:15 a.m. and said that Elizabeth was back on the oscillating ventilator. I knew that wasn't good. I got to the hospital at 8:00 and waited there all day as her doctors tried many things to get her oxygen levels to improve. They were around 80 most of the day, but dipped into the 70’s and even 60’s at some times. I called my husband to start driving from Mishawaka. I knew from her experience Friday, that they had done everything they could think of, and she was still not improving. At 5:00 p.m. when Steve arrived, we talked to Dr. Billmire about her condition. She would probably not survive the night. We were so thankful to Dr. Billmire throughout this that she was always calm and honest, not giving us false hope or telling us what we wanted to hear. We sought her out whenever we wanted to REALLY know how Elizabeth was doing.

We brought our sons back to the hospital to see their little sister for the first and last time (it was RSV season and they were not allowed in prior to this). Everyone was very understanding and helpful. The nurse put curtains up around our bed so we could have privacy, and at 9:00 p.m. we asked to be able to hold her. She was still on her oscillator and all of the wires and tubes, so this was a feat. I held my Elizabeth Joy for the first time. She was so light. After four hours, Steve took a turn. I sat with them and watched her color fade and knew she was slipping away.

We had the most wonderful nurse in the world, Cheryl, who, with a cheerful face, helped us accomplish all of our firsts with Elizabeth as the happy, bittersweet moments that they were. She and another sweet nurse helped us make a hand cast of her beautiful little hand, and brought us drinks and food as necessary. I took Elizabeth back from Steve, and we talked with Dr. Torrine (her neonatologist) about what to do next. This woman was amazing. Pregnant herself, she was there all night and helped us say goodbye to our sweet Elizabeth with compassion and skill.

I knew that Elizabeth was not really with us anymore, but her heart was still beating. First, we turned off the dopamine and dobutamine, which didn't do much. The oscillating ventilator was keeping her heart beating, although her little body could not be surviving at her oxygen level (30 at this point). I held her and helped remove the ventilator. This was the first time I'd seen her without her vent taped to her face. She was so beautiful, with sweet little lips and a tiny, perfect nose. I held her close and sang her a special song that I’d sung to all my children as I rocked them to sleep. Dr. Torrine came to check her about 20 minutes later, and she had gone. I had to say goodbye to my little girl, who I'd only given birth to 17 days earlier. We have no regrets and cherish those days more than anything on earth.

Our little treasure, Elizabeth, is in heaven, but we have a great treasure in the incredible friends in Christ we have here. There will be a day when I go to meet Elizabeth. I long for it. Yet I know that I have two little boys who need a mom to help them accomplish what God has planned for them. In heaven, we'll be a family of five once again.

Sincerely,
Elizabeth's mom, Anne-Marie Huffman (Indiana)

July 12 - Dear Nicholas Sparks (Guest Blogger Monique Clarke)

Dear Mr. Sparks,

Nathan was diagnosed at 21 weeks in utero with a L-CDH. That was a day to remember, all these words the doctor was saying, what did it all mean? After that we had so many tests and scans for the rest of my pregnancy. They told us our baby had less than 50% chance of survival.

I just wasn't prepared for it. I remember it like yesterday right on my 40 week check up they told me his heart beat was strong that was it, I cracked after all this time. I remember saying "Then why is my baby going to die?" That was it. The doctor wouldn't let me go home. They took me up stairs to bring him into this world.

It was the longest 2 hours of my life because here I was fighting not to give birth to him, maybe I thought if he stays inside me he is safe. I remember there was me, my husband and a nurse then bang the room was full of doctors and others. I didn't even see or hear him cry. The doctor brought a photo of him into us to show what he looked like.

When we got to see him there where so many tubes and he was paralyzed so he didn't move. I remember my father saying he looks like a remote control doll and with that he left the room. I think I must have spent nearly all night in with him just looking at him. Here he was normal size yet fighting for his life.

Exactly 24 hours later they came and told us he was stable so they would operate. We waited and waited then someone asked us too follow them, we both thought that was it, something had happened. But when we got over to the children's hospital a doctor explained what they did and how they did it. Nathan's stomach and intestines where up in his chest cavity, his heart was pushed to the right and his lungs were very small and squashed.

Nathan has had 2 repairs now and has been in and out of hospital with gut and bowel obstructions for 11 years. Nathan has asthma and a small hearing problem. Late last year he was diagnosed with Asperges syndrome and now with coeliacs disease. We are now waiting for a bowel bi-opsy to see if there is any damage to the bowels. Nathan has had speech therapy, occupational therapist and physiotherapy. Nathan also has scoliosis. He even went bold at one stage! Nathan has had teeth problems in the past too.

Nathan was born a fighter and still is, he does not get a temperature like every one else he goes cold and clammy. Nathan has a very high tolerance to pain its like he doesn't feel it. Nathan is very good with maths and science but his writing just doesn't connect, a small motor problem.

Nathan is a very special little boy he looks like other boys his age but he's not.

Sincerely,
Nathan's mum, Monique Clarke (Australia)