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

May 11 - Dear Nicholas Sparks (Guest Writer Lisa Coleman)

Dear Mr. Sparks,

I'd like to share a story written by one of our moms, Lisa Coleman.

Sincerely,
Dawn M. Torrence Williamson
CHERUBS President and Founder


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My name is Lisa Coleman. I'm 26 years old, a mother of 3 children, one of which was born with a left-sided CDH. My daughter's name was Trinity A. Coleman. She is a non-survivor. She was born 9/29/99 and passed away 10/15/99. She lived a hard 16 days. It's taken almost 2 years to write this letter. Also, I want to spend a moment to send a special thanks to one of your On-Call Volunteers. She stayed in touch with me during my pregnancy. I was one that found out in utero. She also spent time in Columbus, OH with me and my family. She was there for support every step of the way. She was there the day Trinity passed away, also the day of her funeral. Her name is Dawn Halley. Something happened in her life that I haven't heard from her again. Her daughter, Ashley, is a survivor of CDH. But I send her my love and thanks everyday in my prayers.

I want to write you in reference to your Spring 2001 newsletter and a story.  The doctor went and gave Trinity her first surgery after taking her off of ECMO. It was my 25th birthday, October 4, 1999. I was so happy; it was the greatest birthday present a mother could ask for. I thought for sure she was going to make it through all of this OK. But after hours of her surgery and waiting, the doctor came out and told us everything was moved back OK, but he ran into something he had never seen before. Her small intestines were buckled and rotted, so he had to remove that piece of intestine. After they brought her back to the NICU, I saw a sight I was not prepared to see-- her intestines in a cone-shaped bag, suspended and tied to the top of her bed. Her intestines were lying outside of her, resting on her stomach. I couldn't believe the sight I saw. I was told that they were too swollen to put back, so we would have to wait for a few days before they could try to put them back. I was so devastated. They were able to put them back, but she had to have a colostomy bag on her. I wasn't sure for how long. Well, as days went on, she started to get worse. Then I was told that she had a form of e-coli, that when the doctor cut her intestines, he let a form of the e-coli out into her bloodstream, and that the doctor didn't wait on her blood test to come back. I was upset at this time, but I quickly turned my attention to Trinity and put this in the back of my head.

On the 15th of October, I went to Children's to see my daughter. Before I could step off of the elevator, my dad was at the doors waiting for me, telling me that the doctors want me to pull the plug. We went into a private room. The doctor told us Trinity's oxygen level was low, that she was in a coma, and she wouldn't survive the night. If by some miracle she would survive, Trinity would have brain damage from lack of oxygen. So the doctor stepped out of the room so my husband and I could come to a decision. Of course it didn't take long. We decided it wasn't up to us to choose when she should pass away. It would be hers and God's, of course. The doctors and nurses were almost disgusted with our decision, but I didn't care, this wasn't their daughter; she was mine. So that night was very hard. Time went so slowly. When I was finally alone with my baby girl, I put my hand on her head and sung "Jesus Loves You." Then I said something that was so hard for a mother to say. I held her sweet little hand and told her that if she couldn't fight anymore and she had to go, that it was OK and Mommy will always love her. I kissed her on the head and walked out. An hour later, I decided it was time to hold her, so they did what they could do so that I could hold my daughter. That was the first and last time I held her warm body in my arms. She passed away 2 minutes after I held her. Two days before that, I knew it was coming. It's like she let me prepare myself for it. Not every parent is the parent of an angel. That is what I tell myself everyday I wake up.

When I had found out about her defect when I was 5 months pregnant, on the way home from the doctor during my crying, I looked at my husband and said that her name would be Trinity. He asked why. I said, "The Son! The Father! The Holy Ghost! is what that beautiful names stands for." But after Trinity passed, I told my husband that I blame the doctor for letting the e-coli virus through her blood stream. We talked to a lawyer, but he won't touch the case because of CDH. I was going to send all money for CDH research, also buy my daughter a headstone, which she still doesn't have. I feel so guilty about that. I'm having a hard time affording one, but I will one of these days. I learned not to take James, 7, and Dacia, 3, my son and daughter for granted anymore. Every day of their life is precious to me. I also learned not ever to say never. I thought something like this would never happen to me. So I tell everybody I know to don't ever, ever say "never."

Written by Trinity's Mom, Lisa Coleman (Ohio)
2001

May 10 - Dear Nicholas Sparks (Guest Bloggers Brad and Amy Atkins)

Dear Mr. Sparks,

My husband, Brad, and I were married on June 30, 2001. We weren't trying to get pregnant, but at the same time, we weren't preventing it either, so we made the decision that whenever it happens it happens. We found out I was pregnant in August, and we were both very excited along with our family.

I didn't have any morning sickness or normal symptoms. At 19 weeks, I went in for a routine ultrasound and was diagnosed with having a large right ovarian cyst. It was about the size of a cantaloupe that had to be removed right away. The baby survived that surgery and was kicking all over the place with all the room it had now. We went in for another ultrasound at 24 weeks-- we thought everything was normal because the technician can't tell you anything. We had an appointment with the regular Ob/gyn to go over the results, and we were told that there was fluid around the baby's lungs, and he wanted us to be referred to a specialist to have a level 2 ultrasound done to see if everything was OK. Our doctor thought that it would be normal and not to worry.

We went to Arnold Palmer Children's Hospital in Orlando, and we were told that we were having a girl, but that she had a right-sided CDH and that her chances for survival were not good. With the fluid in the chest, the lungs were collapsed and would not be able to expand. He said that the only thing to do is wait, and at the birth, they would put in a chest tube and drain the fluid, then hopefully the lungs would expand. She was given a 30% chance of survival. We saw that doctor on a Monday, January 21, 2002. We called family and friends and asked everyone to pray.

I worked in a daycare with a parent who used to work with my mother-in-law in a pediatrician's office. Dr. Whele was told of the baby's condition, and he knew of a doctor in Tampa that helped CDH babies. He called my mother-in-law and gave her the website; she then contacted Mary Allen by email on a Friday night, and on Sunday she got the email saying I could be a candidate for surgery. Monday morning Dr. Quintero called me at work to tell me about the surgery and our other options. We were given an appointment for an extensive ultrasound to be done the next day. This ultrasound was to see if there was any lung growth to work with.

That night, Brad and I made the decision that if this was the only possible chance for her to survive then we had to do it. The ultrasound lasted four hours, with a different diagnosis. Dr. Quintero said that she didn't have a true CDH but had an eventration, that is a very weak diaphragm without any organs in the chest cavity but with severe pleural effusion. He told us that rather than put in the tracheal ligation, he would put in a shunt into her chest to drain the fluid and allow the lungs to expand. There was a 40% chance of the baby pulling out the shunt that could mean another surgery to replace it. This was the best news we could have hoped for, so we scheduled the surgery for January 30, 2002. The surgery went well, and Friday the 31st, we went down for an ultrasound and saw that instead of little slivers of lungs her chest was filled with lung tissue. Her lungs expanded overnight with very little fluid left in the chest.

Every week we had to go to Tampa for ultrasounds-- each time it kept getting better and better. Three weeks after having the shunt put in, they realized that she pulled it out. Since there wasn't much fluid left, they decided to wait and see if it came back before they decided to do surgery again. We were thankful for that. Luckily, the fluid never came back, and each week she got better, and her chances of survival went up. It was then time to schedule the date of the C-section, and the best time for Dr. Quintero was on April 9, 2002. Her chances of surviving were excellent, and we were told that once she was born, she would be ventilated, and after she was stable, she would have surgery to repair the diaphragm 24-48 hours later, with a possible hospital stay of two weeks. We were prepared and had family and friends waiting for her birth. April 9th came and at 8:02, Faith Marie was born. She started crying right away, which surprised everyone. They tried twice to ventilate her, but she refused, so they decided to give her a chance to breathe on her own. Her Apgar scores were a 7 and an 8. She was taken up to the NICU where she was weighed and measured. She was 6 pounds 7 ounces and 19 ¾ inches long.

After many ultrasounds and a chest X ray, the neonatologist and pediatric surgeon came in the room and told us that she had a small hole in the diaphragm that was allowing the liver and part of the intestines to come thorough. To stop more from coming through, they decided to put her on a vent but still allow her to take her own breathes, but the vent would only allow the air to go into the lungs and no where else. She was stable all through the night, and at 2:30 p.m. April 10th, went into surgery to have the hole repaired. That was a success, and we were told that she would still be on the vent and paralyzed for at least 12 hours.

Once again she refused and started moving around and breathing normally after a few hours. She was taken off then and never had to go back on. April 11th, we finally got to hold her and on the 12th, she started feeding. We were given the best news on Sunday, April 14th, that the next day she would be coming home.

She proved everyone wrong and came home within six days of being born and thriving. She is a little slow at gaining weight but is doing well other than that. Since Dr. Whele found Dr. Quintero for us, we decided to have him be her pediatrician. If not for him, who knows where we would be right now. We love everyone who took care of Faith at St. Joseph's Women's Hospital and Tampa Children's NICU nurses and doctors. They are the best, very caring, and many of the nurses had children in their family who had to be in NICU, so they knew how it felt. Cherubs have also helped as a wonderful support system, and it helped seeing other children who had it and survived.

Sincerely,
Faith's parents, Brad and Amy Atkins (Florida)

May 9 - Dear Nicholas Sparks (Guest Bloggers Julie and Bruce Baker)

Dear Mr. Sparks,

This is a story of my son, Joshua Bruce Baker. Born 21-4-03 to 23-4-03.

I had an ultrasound at 18 weeks. Everything seemed normal. My husband Bruce and I found out we were having another boy (baby number 4) which was really nice and we were excited. By 32 weeks, I looked and felt that I was having twins. I had fluid around my ankles, which I thought was normal. I decided to go to my G.P. that week. I asked him if I had the correct dates. He said he gave the correct dates but he checked the size of my belly. He wanted me to see the Flying Gyno in Roma, who was going to deliver the baby by C-Section. So Bruce and I went with the kids to Roma. The doctor sent me for an ultrasound to see why my belly was huge. He just said I had a lot of fluid.

The radiologist that did the ultrasound said that he had a hernia. He told me to go back to the doctor and he would explain everything to me. I just thought he had a hernia and it could be fixed. I wasn't that worried. When the doctor told me what was wrong, he told me that it was out of his hands and I would have to deliver in Brisbane. We didn't want to go there as we lived on a cattle farm (and still do) and we were 5 hours away from Brisbane. But we knew we had to go.

The next day I was flown out by the Flying Doctors to Brisbane. When I got there, they wanted me to have ultrasounds to see how the baby was doing. When they really explained what was going on, we just didn't want to believe it. But reality struck when the specialist told me they were giving the baby 50/50 chance of survival. When Bruce drove down they wanted me to explain to him what was going on. He was devastated. I spent a week in hospital. During that week, I had 2 litres of fluid drained from my stomach to relieve me from being uncomfortable, but 2 days later the fluid returned and I was uncomfortable again with this huge belly.



The next morning we went down to see him. The nurses said he had a bad night and he was looking a little grey. They told us we had to prepare for the worst. It was the hardest thing. We, as parents are expected to die before our kids, not our kids before us. We stayed with him for a while. I had to rest as I was so tired from the caesar. On the 23rd of April we were rushed down to be by Joshua's side. His sats were really low. The doctor told us that if he kept going his heart would fail. They gave us the choice to turn the machines off or pray for a miracle. The nicest thing we could do was to turn the machine off for him, to be free and to be our little Angel. It was the hardest decision that we ever had to make in our lives.

The saddest thing is we never saw his eyes open and we never heard him cry. He died in my arms. This was the saddest day of our lives. Everyday I think of him. He would be 2 this year. We miss him so much. He is our little Angel in Heaven.

We had to stay at the Ronald McDonald house for 7 weeks until he was born. He wanted to come a day before a scheduled C-Section, so it was all hands on deck. When he was born, they briefly showed our baby, Joshua, to us. I didn't hear him cry at all. The doctors said he let out a little cry though. Four hours went by when Bruce and I went down to the ICU ward. He was hooked to everything. They said he was doing fine. I took heaps of photos of him. He didnt like to be touched and when we did his sats dropped. He was the most beautiful baby boy. He was so perfect on the outside, imperfect on the inside. He had a left sided hernia. His heart was pushed to the right side of his body and his lungs were under developed.

Sincerely,
Joshua's parents, Julie and Bruce Baker (Australia)

May 8 - Dear Nicholas Sparks (Guest Bloggers Luke and Renee Angil)

Dear Mr. Sparks,

My husband Luke and I got pregnant very soon after being married. We weren't too worried about it though. Luke had just recently joined the Air Force. Soon after Luke finished tech school, we got orders for Misawa Japan. That would take us across the world, very far from any family. I think this was especially hard for Luke. Luke had never really left home. He lived on his own for awhile, but he was always minutes away from his immediate family. Myself, being an Army brat, was very used to moving. Come to find out this was very hard for me too. I'd never been that far. We were both very homesick to say the least.

My due date was to be November 12, 2004. Just like Tyler (my 11 year old), David didn't want to come out. At 42 weeks I was induced. Up until the second I delivered David I thought he was going to be a happy, healthy baby. Funny thing about being induced was, I was scheduled to be induced that previous Friday, November 19th. I got a call the night before and it had to be cancelled, due to an emergency. We rescheduled for Monday November 22nd. Thank god for that! I was later told the doctor on call Friday would have had no idea what to do. She'd never had to deal with a congenital diaphragmatic hernia. The doctor that was on call had previous experience and immediately recognized it after the initial x-ray. After I delivered David I could tell by the nurses face that something was seriously wrong. I remember them telling someone to page Dr. Johnsonwall STAT. I watched ER enough to know STAT was serious He was then whisked away to x-ray and Luke went with them. I was scared to death, but the doctor assured me that it was probably only a collapsed lung and they could fix those easily. WHEW! Ok. So I had dinner and waited, and waited...no one was coming back. About 2 hours passed and Luke came back and I could tell he had been crying. He told me something was very wrong and Dr. Johnsonwall would explain it to me. Meanwhile, David was being sedated, bagged and hooked up to numerous machines. I told Luke to get me out of this room and take me to my baby. He got me into a wheelchair and wheeled me into the nursery where David was. It was the most heart wrenching site I had ever seen at that point in my life. Little did I know that it would only get worse. After I got back to my room Dr. Johnsonwall came in with consent forms and told us that this was not good. CDH is the 2nd worse thing that could happen to a baby. Number one being congenital heart defect. He said they would do everything they could. I immediately lost it. Because this military facility didn't have the resources to help David they spent most of the night calling around all over Japan to find a hospital to help him. They even called a few stateside hospitals. David was unable to fly though b/c his lung was just not stable. The doctors also decided he couldn't go too far. Because of the bumpy back roads in Japan he probably wouldn't make it. Travel time is doubled in Japan because of the roads. Luckily we found a hospital only an hour away in Hachinohe City. This is where David would spend the next month. The next time I got to see David was about 2am...8 hours after I delivered him. He was in a neonatal transporter in the back of an ambulance. We left that hospital and followed that ambulance all the way to the hospital. Once David got up to the NICU they switched him over to their equipment, started giving him all sorts of meds and fluids and tried to stabilize him. I can't really get into the technical part of it...I felt out of my body, like I was having a dream. Most of those first two nights are a blur to me. I remember sitting there, in pain from just delivering a baby several hours earlier, and watching about a dozen people rush around Luke and I to help David. It was like we weren't there. We were allowed to stay the night at the hospital. This was a privilege because Japanese culture is so different than ours... that would not have happened in any normal situation. Having a baby in Japan is a very personal thing. The mothers have to stay for about 2 weeks, with the father only visiting occasionally.

Tuesday, the morning after David was born we were also informed by the chief of the hospital that the tech who performed my ultrasound at 5mo. noted that there were problems, passed them on to the doctor and the doctor was in the middle of a move and overlooked it. Some of you are wondering why we didn't 'sue'...b/c everyone on base was very helpful and tried to do everything they could for David...and they did. He's alive. It would be ungrateful of us to even think of doing that. Maybe it was supposed to be like that? Maybe if it wasn't overlooked, David would have wound up at another hospital and the results wouldn't have been so good. We are grateful!

The next 4 days David lay there fighting to become stronger. He couldn't have surgery until he was stronger and stabilized. The doctors and nurses were at his side 24-7, watching over him like a hawk. It's not like here, where they are checked on once an hour. The ratio of nurses to babies is 1:2. Four days after his birth David went in for surgery to repair his diaphragm. This surgery would last about 6 hours. It was Thanksgiving Day, and as we watched sumo wrestling with the hospital chief of staff and his wife, David was down the hall fighting for his life. I walked up and down that hall several times...trying to get a peek in.

The doctors finally wheeled David back into the NICU. Still all swollen and yellow like he has been since he was sedated the day he was born...he now had a large dressing under his left rib cage. The doctors told us before he went in, that there was a possibility that he wouldn't make it. **Now when I say the doctors told us throughout David's story...I mean we had a translator there for us throughout the whole process**. They said the surgery was a success and normally they would use a mesh to cover the hole in the diaphragm. David's wasn't exactly a hole though. His diaphragm was shaped like a horse shoe. So they had to close it and sew it to his back. The next 48 hours were very stressful. If David was going to reject this surgery, he would most likely do it in the next 2 days. We were on pins and needles. He had ups and downs. They were constantly x-raying him and taking his vitals.

About a week after surgery, they slowly started to wean David off of his sedation. After surgery, things moved pretty fast. He was only in for a month. About twice a week he would come off of certain machines, medicines, fluids...etc. He was originally on a feeding tube, breathing tube, several fluids to feed him, tons of medications to fight bacteria and infection and to control pain. About a week and a half before we got to bring him home I was able to feed him with a bottle. About a week before that I was able to pump and give him breast milk through his feeding tube. He was healing fast and getting stronger and stronger as each day passed. I kept begging to take him home. We wanted him home for Christmas. They wouldn't promise us anything. But he was looking well! Not one complication after surgery except a small seizure. They aren't sure what caused it. They think it was low magnesium levels. They did an MRI and everything was fine. Soon the breathing tube came out and he just had a canulla, blowing oxygen up his nose. The feeding tube stayed in his nose the longest, but I was still able to feed him a bottle. He got his first bath a week before we were able to bring him home. He screamed like crazy!!! I loved that sound!

Up until this point Tyler had not seen David. He was only 9 at the time and not allowed in the NICU. Once David was moved out of the NICU he was able to come visit. He was so excited. Tyler was very upset this whole time. He wanted to see David in the worst way, and could not understand what was going on. About a week before we got to bring him home, we brought Tyler with us. He got to help give him a bath and he got to hold his brother for the first time. Tyler was very patient with us and understood why we weren't home a lot. We got up in the morning, got Tyler off to school and drove an hour to the hospital. We stayed until Tyler came home and drove the hour back home. It was rough on Tyler. He stayed with our neighbors a lot. Thank god for Ulli!!!

Today we got to bring David home!! Five days before Christmas. That's what we wanted, to have him home for Christmas. It was the best Christmas ever. I've never felt such a relief! We invited Ulli and her family down. We were so thankful to have them there. They were our support system when we didn't have our family. They saved us from having to worry about Tyler while we were worrying about David. Tyler spent Thanksgiving with them, and they saved us a plate when we came home that night. We are forever grateful to them.

Since Misawa doesn't have the specialists for David's follow up care, the Air Force had decided to move us. We have to put together an EFMP (Exceptional Family Member Program) and it has to get approved. Originally we were supposed to be in Misawa until March 2007. But the Air Force sometimes has to move people due to medical reasons. We had our choice of about 4 bases. When we heard Wright Patterson AFB was one of them, we were soooo excited. That's the closest base to our family in Pittsburgh. We spent the next few weeks gathering all the necessary medical paperwork to get us moved. Within a month or so we got approved for WPAFB and we were on our way.

David did well on the long plane ride home from Japan to Ohio. He slept the ENTIRE way!! I was wondering how he could be so sleepy when he slept for a month straight!

We now start of journey or follow up appointments for David. He has to see a developmentalist to make sure he's on track. He also has to see a Pulmonologist, Neurologist, Gastroenterologist and Cardiologist. The neurologist says he's fine! Pulmonologist clears him.. but wants to watch him. Gastro says it's the best CDH they've ever seen, and Cardiologist only finds a small heart murmur that they say will close up in about a year or two on it's own. The developmentalist suggested physical therapy, speech therapy and occupational therapy. He got evaluated by all three for services and all cleared him except physical therapy. We went to physical therapy for about 6 months. They helped him crawl, roll, and walk on time.

David has had a few problems since birth, but nothing too bad. I actually feel like we are one of the lucky families. I read a lot of other stories about G-tubes, and eating problems and thankfully we've never had to deal with that. David got a pretty serious pneumonia in March of 2006 and was hospitalized for a week. That was very touch and go and the night we got to Children's...they were not absolutely sure he'd make it through the night. He was very weak and couldn't breath on his own anymore. They had to intubate him and he stayed this way for four days. He eventually recovered and came home.

The second time David got pneumonia was in August 2006 and it was nearly as serious. He was hospitalized for two days. At David's follow up appointment for this episode in September, the pulmonologist did another x-ray of David's chest. What they thought all along was cysts and scar tissue from his initial surgery was actually his bowels coming through his diaphragm again. The only reason they found this was because David was constipated and these "cysts" were a different color now.

They admitted David to Children's again so they could run tests on him and so we could talk to the pediatric surgeon. He wanted to operate on David ASAP. So, David had his 2nd hernia surgery on October 19th, 2006. I felt very comfortable about this surgery. The doctor was very confident. This time, we also were able to have our family with us. The surgery went very well and only took about 3 hours. David was coming off sedation when we went to his room and by the next morning he was climbing the walls. They suspect fixing the two holes they found will prevent any further pneumonias. So for now....were home free.


Written by David’s parents, Luke and Renee Angil (Ohio)

May 7 - Dear Nicholas Sparks (Guest Bloggers Jeff and Nicole Bacon)

Dear Mr. Sparks,

Our son, Nathan Presley, was born on May 5, 2002. We were ready to have a healthy baby, and that is what we were told at all of the check-ups. "He looks great." Well, his health was far from great. We had never even heard of CDH before Nathan, and we have been around a whole lot of babies. Our eyes are opened now.

Just after Nathan was born, there was a team working on him of about nine people. They tell you not to be alarmed, but when you have been in infertility process for nine years, and you see a baby born to you that you never thought you would have, it does not take much to become alarmed. It did not take them long to tell us that we would be losing our son to a defect called a diaphragmatic hernia. "What is that?" we wondered. After we told each other, "They can fix him," Nathan passed away and went back to the Lord in about two hours. We were left to try and understand what happened to our so perfect baby boy. We may never understand, but we held our miracle baby and he taught us about life.

Sincerely,
Nathan's parents, Jeff and Nicole Bacon (Minnesota) 

May 6 - Dear Nicholas Sparks (Guest Blogger Rose M. Anders)

Dear Mr. Sparks,

Let me start by telling you all that at the age of 28 and being a single mother, I decided to have a tubal ligation in Jan. 1997. I met my husband a couple of months after my surgery and married him in Sept., 1997. He is 8 1/2 years my junior has never been married or had children. So having any children together seemed out of the question.

I got pregnant in Nov. without realizing it. On Jan. 1, 1998 we talked about the possibility, but quickly decided the absence of periods was due to a hormonal imbalance.

I went to the doctor in April to get my other children a check-up. I discussed my problem with our doctor. He explained that recent studies had showed that 1 in 300 tubals failed so he did a pregnancy test. It came back positive.

My husband was thrilled at the idea of having "another" baby. I on the other hand kept insisting that I "could not give birth again". And I refused to tell anyone that I was pregnant which seemed too strange. I had always gotten so excited when I had gotten pregnant before as I had been told at the age of 19 that I would never have children. I had endometriosis so badly.

It didn't take more than another couple of weeks before my mother noticed that I was pregnant. I first went to the doctor on May 6, 1998. My uterus was about two weeks ahead of what it should be so an ultrasound was ordered for two days later.

Cloudey's CDH was found. I knew something was wrong because of the way the technician was treating us. When we left, I told my husband and my children of my suspicion. My doctor called the next day to explain what he could. At first he was very hopeful. Another woman under his care had given birth to a baby with CDH in March, that had survived and was doing well.

He said that he was sending me 300 miles away to a hospital capable of delivering Cloudey. As it turned out I had to quit seeing him after 2 visits, due to a personal conflict with him (he gave us NO hope for Cloudey).

So it was July 13 when we went for our first and only visit with the doctor who would deliver Cloudey. He gave us very little hope. But it was better than none. We received the only information so far on CDH and talked to the neonatal specialist who would care for our baby.

We drove to the hospital again on Aug. 10 to have labor induced, so we wouldn't further risk Cloudey's health by having her born and life flighted.

Other than the stress of knowing that Cloudey had CDH and not knowing if she would live, the pregnancy was very normal.

My labor induction was changed to the 11th after arriving at the hospital, because I have short labors.

After 2 hours of hard labor I had Cloudey Rae. She was passed threw a window to the nursery and put immediately on a ventilator. She had been born 20 days before her due date. At birth she was diagnosed with the following; sepsis, hypotension, hypovolemia, persistent pulmonary hypertension, coagulopathy. She was immediately moved to a children's hospital where we were told she would most likely die before she was 12 hours old. The doctor said that they could fly her to Phoenix for ECMO, but she probably would not survive the flight. George, my husband, and I went to talk about it. We soon decided to refuse the ECMO, and leave everything in God's hands. By the time we made it back upstairs, she was doing a lot better. Her 2% chance had turned to a 50% chance.

She underwent surgery on Aug 12. Cloudey's postoperative diagnosis was; left Congenital Diaphragmatic Hernia, Bochdalek's hernia. Procedure was; Repair of hernia with abdominal wall muscle flap. Amazingly enough she surprised everyone and survived surgery. She was on an Oscillator and Nitric Oxide. Things were looking up.

Until day 9. She was diagnosed with pseudomonas, left pneumothorax, and right ventricular hypertrophy. We had been trying to correct a right pleural effusion since day 3 and hypertriglyceridemia since day 8. One left chest tube had been placed on Aug. 12. On Aug. 28th, they put one more on the left side, one on the right and repositioned the first one. This was done because of chylothorax, right.

She was started on feedings on Sept 1. They discontinued it Sept 4. She had severe edema to the point she looked as though she was extremely deformed.

On Sept 7 Cloudey was diagnosed with BPD. A sever case of BPD. She was fighting a cogulase negative staph infection. It all seemed to be slipping away. She had come off a jet vent on Sept 3 and had weaned significantly off nitric oxide. Now she was back on the oscillator vent and 10ppm of nitric.

On Sept 11 she suffered from seizures. Cystic BPD was confirmed. Further diagnosis was; Hypothyroid, Sepsis (again) and reactive airway disease.

Nothing seemed to be helping her. We could no longer keep praying for God to keep her alive. We could only pray for His will to be done.

My husband had had to return to work on Aug 31 and had driven the 350 miles on Friday and back on Sunday night. Our other children had been to see her and spent time touching and talking to Cloudey.

On Sept 11 I drove down to pick up my husband and kids to come and visit. We decided just before leaving not to take any of our other 3 kids back up. We felt we needed that weekend alone with her.

They removed her chest tubes before we arrived back to the hospital. She looked so sad. Her belly was dark blue from the infection and was so incredibly swollen.

We spent the entire weekend at the hospital. I could hardly bring myself to leave her long enough to eat. I had decided to go home with my other kids for the week. I felt as though I was keeping her holding on and making her endure needless pain. I'm not as strong as some of you, I couldn't just say no more.

We left Sunday night knowing it would be the last time we saw our baby alive.

Monday things were the same as when we left. I called about every hour. By Tuesday I was sure that since things had not improved that she was getting tired of fighting. At 11p.m. when we called things had started going down hill. We started packing by 11:30 after talking to the doctor she said Cloudey was doing fair, we really didn't need to come up there. Just as we finished packing the car at midnight they called and said to come to the hospital ASAP with 10 minutes after hanging up the hospital called back. Cloudey had coded. Within 30 minutes they said resuscitation effects were not working. But they would try some more. At 1:43am on Sept 16, 1998 Cloudey Rae Anders was declared dead. Cause: cardiorespiratory failure.

All I can say now is that I love her so much and miss her with every fiber of my being.

Sincerely,
Cloudey's mom, Rose M. Anders (Utah)