Thursday, April 30, 2015

April 30 - Dear Nicholas Sparks (Guest Blogger Jennifer Parker)

Dear Mr. Sparks,

Caden Andrew Parker was born on June 1. My pregnancy was a normal pregnancy. I had an ultra sound done at 24 weeks and everything was fine. They told us that we were going to have another boy. We were excited. I left the doctor's office happy. Around 35 weeks, I went into premature labor. The doctor stopped it and I went home. A week later, I went into premature labor again, and they stopped that as well. Around 38 weeks, I went into labor again. I had scheduled a c-section for June 8th. They went ahead and did a c-section. Once they got Caden out I heard him cry once and then it was quiet. I could tell by the look on the doctor's face that something was wrong. The neonatologist came up to the top of the bed and told me that they were having a hard time getting Caden to breath and that they were not going to be able to bring him to me instead they had to take him to the nursery. He then looked at my husband and asked my husband if he wanted to stay with me or go with him. I told him to go with Caden. I had planned on getting my tubes tied. My doctor asked me if I still wanted to get them tied and I said yes, because if Caden didn't make it I didn't want to have any more babies. After surgery they wheeled me to recovery. I saw my husband's face and the doctor's, I knew that there was something wrong. The neonatologist told me that they were not sure what was wrong with Caden but that it could be one of two things. Either it was Congential Diaghramatic Herna (CDH) or something else but they wanted to transport him to Huntsville Hospital because the equipment there was much better than the equipment at Crestwood Hospital. My doctor told me that if Caden stayed at Huntsville Hospital they would transport me as well, but they were not sure if they would send him to Vanderbilt in Nashville, TN or Children's Hospital in Birmingham, AL. They wheeled him to my bedside in a covered bassinet. I did not get to see him because the paramedic was in the way. Four hours later we received a call that Caden did in fact have CDH and that since he was otherwise healthy they were going to transport him to Children's Hospital in Birmingham, AL because that was their specialty and since he was otherwise healthy they wanted to give him the best chance possible. They told us that they would call once they got him down there. By now it was midnight. I told my husband to go home and get some sleep and then in the morning he needs to go to Children's Hospital and be with Caden and not to worry about me. That has a horrible night in the hospital. My husband David went down that morning to be with Caden. I got a call from a nurse in the NICU at Children's asking me if they could put in a PIC line. I told them that was okay. David met with the resident surgeons and nurses the next day. They explained Caden's condition to him and all of the risks. Caden had a left CDH and that his left lung was under-developed due to it but they weren't sure how much until they do surgery. They told him that they would have to do surgery but that they wanted to wait until Caden got a little more stable. Fortunately, Caden never had to go on ECMO. Caden was born on a Wednesday evening by c-section and Friday afternoon, I talked the doctor's into letting me go so that I could go and be with my son. They really didn't want to let me go so early but they went ahead and discharged me. Saturday morning, I got to see my son for the first time. I was so emotional that I could not cry. He looked so pitiful, hooked up to all of the machines. I just sat next to him caressing him. They had to keep him sedated because he kept trying to pull on his tubes. We stayed at the Ronald McDonald House and received a call late Sunday evening that they were going to do surgery early Monday morning June 6th. We got to the hospital early that morning. We requested a chaplain to come and pray for Caden before his surgery. It took a while for one to come but finally we were able to have a chaplain pray over him. They wheeled him down to surgery. We got to meet the surgeon for the first time. He explained to us what he was going to do. He told us that there are all kinds of things that he could tell us to worry about during the surgery but that he was going to worry about them and we needed to stay positive. He told us that he would answer any question that we asked but there were things that we really shouldn't worry about. Ultimately we knew that Caden would not survive without the surgery, so we didn't ask too many questions. About 2 hours later he came back out and told us that the surgery was a success. He said that Caden's left lung was about ¼ to 1/3 the normal size but that it should continue to grow until he is about 8 years old. Caden was sent back up to NICU. His recovery was pretty good. They took the ventilator out and Caden started struggling. His stats started to go down, so they put the ventilator back in. At this point, I still had not been able to hold my sweet boy! I cried everyday! I just so wanted to take my baby home! I would sit each day all day by his side. A few days later Caden decided that it was time to take the ventilator out and he did. The doctor said that he was getting ready to remove it again but Caden had beaten him to it. I was finally able to hold my baby!!! It was such an emotional time that I could not cry. I was beyond tears!! Slowly they started disconnecting tubes. They inserted a feeding tube into his nose and began giving him Pedialite and then they started giving him breast milk. They decided to move him to the Special Care Unit. They started trying to bottle feed him and he would take some by mouth and then would act as if he would throw up and lots of times he did throw up. So then they would go ahead and put the remainder of his food in his tube. We also had an occupational therapist work with him to try and get him to take all of his food by mouth. Everyone kept telling me how good she was. He would take some from her. He then started projectile vomiting. They decided to do an ultra sound to see if he was having an emptying problem. The ultra sound showed that he had developed pyloric stinoisis (not sure of spelling). It is a condition that babies between 3-6 weeks develop. The doctor said that it is pretty common but it is not common for babies to have both. It is basically where the muscle that empties your stomach into your small intestines constricts and does not release, allowing your stomach to empty. The surgeon said that he wanted to do an Upper GI to make sure because of the way that he performed the hernia surgery, it might make the ultra sound incorrect. So the next morning they did an Upper GI and it confirmed that Caden did in fact have pyloric stinoisis. The surgeon came to see me and said that the surgery could be done lyposcopically. In a way I was glad that he had this condition because I was hoping that it would explain why he was not able to keep his food down and why he was not eating much from the bottle. It turns out that was the case. Once he recovered from surgery, he was able to start eating by bottle and keeping his food down. He was on Zantac and Reglan to help with the reflux. Because he burns so much calories breathing, they wanted to fortify his breastmilk by adding similac powder to it. A few days later we were released from the hospital and ready to go home. Caden went home eating a bottle and breathing room air!!! No oxygen and No feeding tubes!! We were so fortunate. We prayed and thanked God for sparing our angel. Caden is now exclusively breastfed. We no longer have to give him fortified milk. He is 3 months old and weighs 13 pounds!! We are going to have to have another surgery in a couple of months because Caden has two small hernia on either side of his groin and they want to fix it. But all in all, the doctor is very pleased with his progress. He has told us on lots of occasions how tough he is and how much better he is doing than most babies with this condition. We have another son named Logan. Logan is 2 years old and loves his brother. We went to Birmingham last week for a follow up appointment and I told the surgeon that I was scared to get too excited because I was afraid that something might set him back. The doctor said that Caden is like a normal baby. He said that there could be a chance that his diaphragm will pull from his side but they will monitor him for a while. That really made me feel good.

Written by Caden’s mom, Jennifer Parker (Alabama)

Wednesday, April 29, 2015

April 29 - Dear Nicholas Sparks (Guest Blogger Nicole Padgett)

Dear Mr. Sparks,

Our pregnancy was pretty uneventful. The only drama was that I failed the triple-screen blood test and had to go to Denver for an amnio and a high-level ultrasound. It was a big shock – in my ignorance, I never thought that I would have anything but a perfectly healthy baby. We worried and panicked for ten days until the results came back from the amnio – and luckily, everything was normal. At 36 weeks, we had an unscheduled ultrasound because my blood pressure was high, and they wanted to check the size of the baby and the amount of amniotic fluid. Again, everything looked terrific.

My water broke the day before my due date, and we rushed to the hospital at 3:00 in the morning. After a lot of pushing and some help from forceps, Riley was born on Sunday, August 12 at 4:33 in the afternoon. We were so surprised and happy to have a boy. My husband, Devin, was so excited to have a son that he immediately started announcing his full name to everyone – even though we hadn’t formally agreed on it!

Riley scored two 9’s on his Apgars. I didn’t get to see him right away because it had been a stressful delivery, and they whisked him away as soon as he came out. They brought him to me for about 30 seconds after they’d cleaned him up, and I got to see him, but his eyes were closed, and he had an oxygen mask over his mouth (we live at high altitude). Devin went with Riley and the doctors to do some routine tests. They came back a little while later, and our pediatrician, Dr. Fahy, told us Riley was breathing very rapidly. He said that it was extremely common in the altitude and not to worry. The doctor said Riley would have to be on oxygen for at least 12 hours, and that he was sorry we wouldn’t be able to have him with us the first night. We assured him that it was okay; we just wanted what was best for Riley. As he was leaving the room, Dr. Fahy said, “Before I go home, I think I’ll do a chest X ray just to make sure his lungs are fully inflated.”

Some time later, maybe 45 minutes, doctors and nurses started hovering around us and acting a little funny. My OB-GYN was still there, and he looked upset. Devin was anxious because they had asked him to leave the nursery. Finally, Dr. Fahy came into the room and said, “Well, we found something on the X ray we weren’t expecting.” Then, he held the X ray up to the window and said (and I’ll never forget these confusing and horrifying words), “Now… see here, how the heart is on the wrong side of the chest?” WHAT?!

The rest of the day was just a blur, and I only remember bits and pieces. There was lots of talk about how they (the doctors) never would have guessed it – Riley was so pink and healthy looking when he came out. There was talk about the Flight-For-Life helicopter that was coming from Denver. There wasn’t going to be enough room on the helicopter for Devin so he started making plans to drive to Denver (four hours away) on the two hours sleep we’d had the night before. He finally agreed to let a friend drive him. We were waiting for our friend to show up when we got the news that the helicopter had turned around and gone back to Denver. It ran into bad weather over the mountains. They were going to have to wait for their airplane to return from Wyoming. It was very stressful because we didn’t know how stable Riley was, and we wanted him to get to TCH as soon as possible. The good news was that the plane was big enough that Devin could go with Riley.

There was talk about how wonderful the doctors are at Children’s Hospital in Denver. There was talk about how the Flight-For-Life people would put Riley in his own safe “space capsule” for the flight, and how they would take amazing care of him. There was lots of talk about diaphragmatic hernias – and it was so weird because, I mean, who had ever even heard of CDH? We were definitely in shock those first few hours.

Finally, five hours after Riley was born, the plane arrived. I was wheeled into the room to say goodbye to Riley – he was under an oxygen tent and again, his eyes were closed. I sang him a little song that we had listened to every day during my pregnancy and then that was it… they left. I had a Polaroid of him that I kept by my bed.

Devin was with Riley for the first three days of his life almost every single minute – I wasn’t able to leave the hospital until the day he was scheduled for evening surgery. Devin called me while I was en route and said there had been an opening in the O.R. and that they decided it was best to take him early. I was so relieved because I was anxious for him to have the surgery, but I was also panicked because I was afraid I might never get the chance to see my baby with his eyes open. When I got to the hospital, I found Devin in the waiting room, and about 15 minutes later, someone came out to tell him the surgery had gone well. A half hour later, we were both with Riley in the ICU.

They rest of the story is remarkable. We moved into the Ronald McDonald house for what we thought was going to be a long stay. But in a week, we were on our way home with Riley. They kicked him out of the hospital for being so healthy. We took him home on oxygen because we were traveling to a higher altitude, but he came off of that in six days. His doctor has referred to him as a “normal baby who had some stuff in the wrong place.” Although our time at Children’s Hospital was brief, I don’t think we’ll ever forget how it felt to be there -- the sounds, the smells, everything.

I don’t know why or how we got so lucky. Riley had a sizable hole in his diaphragm. But for some reason his organs didn’t decide to move up into his chest cavity until very late in the pregnancy. His lungs were fully developed, and he didn’t suffer from any serious complications. He is now taking part in a study at TCH on the effects of nitric oxide – he is one of the few babies that didn’t receive it, and so they are using him as the control patient.

We are full of gratitude every day to have Riley in our lives. It doesn’t seem fair that some of the little angels don’t make it through this ordeal. I cry sometimes when I see a helicopter, wondering if it’s Flight-For-Life, and my husband and I both cry when we stop and think about how things could have been different.

Written by Riley's mom, Nicole Padgett (Colorado)

Tuesday, April 28, 2015

April 28 - Dear Nicholas Sparks

Dear Mr. Sparks,

We are on Capitol Hill right now.   Families and researchers are meeting with Congressmen and Senators to get resolutions passed to make April "Congenital Diaphragmatic Hernia Awareness Month".

S.Res. 115: A resolution designating April 2015 as “National Congenital Diaphragmatic Hernia Awareness Month”. was unamiously passed in the United States Senate.

H.Res. 224: Expressing support for designation of April 2015 as “National Congenital Diaphragmatic Hernia Awareness Month” is sitting in committee in the United States House of Representatives.

We are going door to door on Capitol Hill trying to get support to get both passed and onto President Obama.

Wish us luck!


Dawn M. Torrence Williamson

CDH Mom Raising Awareness

Monday, April 27, 2015

April 27 - Dear Nicholas Sparks (Guest Blogger Debbie Oosterhoff)

Dear Mr. Sparks,

My son Tyler was born on March 28, 1995 with left side CDH. We had absolutely no idea our lives were going to change on that day. I should say that Tyler is our second child. Both of my pregnancies were normal and I had no problems. Taking that into consideration, my doctor felt I did not need an ultrasound. To this day I have mixed feelings regarding that decision. Everything went wrong that day. I delivered Tyler naturally and he came out pink and crying until my husband cut the cord and he turned blue. The nurses and doctors immediately began bagging him. As far as we know he was never without air. They rushed him out of my room and began calling every doctor. I was still laying in my room with my husband by my side not knowing what was going on and all of a sudden we heard "code blue in the nursery". During this time my doctor hadn't finished with me yet. This hospital was not equipped for these kinds of emergencies but they did a remarkable job keeping my son alive. While they were working on Tyler, my doctor finally came and finished with me. After I was done he went back and stayed with my baby and assisted the other doctors. In the meantime, my nurse came in to push on my stomach and I started hemorrhaging. When this happened my husband was in the nursery trying to find out what was going on, all of a sudden he came down to talk to me and they wouldn't let him in the room. I ended up having a complete DNC. Needless to say, my husband nearly lost two very important people in his life. The good Lord was definitely on our side that day. Tyler was bagged by hand for 7 hours before he was transported by ambulance to the University of Chicago NICU. They brought him in so I could see him before they left, I barely could see him with all the machines he was hooked up to and I was very weak from the hemorrhaging. I was so scared because I knew that I may not ever get to see him again. They only let me touch him a split second before they rushed him away. My husband and his parents went to Chicago, IL while I stayed overnight in the hospital in Crown Point, IN with my parents and our 2 year old son Austin. We are so thankful that we have great parents and family we could not have made it through all of this without them. Anyways, Tyler was stable when he left and had just enough oxygen to get him to Chicago. Right after they got there he took a turn for the worse. The doctors, nurses, and my husband kept in touch with me through the night so I knew what was going on. I was released from the hospital the next day only if I promised to go home that night and get some rest before I started out on a very long haul. Tyler was put on ECMO right after he got there or he was not going to make it. He remained on ECMO for 22 days. He was born on a Tuesday and on Friday he had his hernia repaired. They told us his hole was the biggest they had ever repaired. It was closed with a piece of gortex. While he was on ECMO he caught a real bad bacteria infection in his blood which was scary, but thank God that is the only thing that happened. He was a month old before we were able to hold him for the first time, so you can imagine how emotional that was for us. He came home on May 22, 1995, a lot sooner than anticipated. Beth Zimmerman, who is one of your board members was one of Tyler's nurses and if it weren't for her we would have never been prepared for his homecoming. She's also the one who recommended us to your support group and I'm sure glad she did. Anyways, Tyler came home on oxygen which he came off of that September, feeding tube and an apnea monitor which he came off of 2 months later. I would like to say that throughout this ordeal Tyler had his weight in his favor, he was 9lbs 6ox and 22 inches long and it's a good thing was a big baby because he handled all this a lot better I think. Tyler has gone through physical, speech, and developmental therapy since he first came home and just graduated in Dec of 1997. Sooner than they anticipated. Since coming home he has had only 1 surgery which was because he has an undescended testicle. That was out patient surgery and he handled it like a champ. He has never been hospitalized with any illness. Today as I write this letter Tyler is going to be turning 3 years old in a month, and a day does not go by that I don't look at him and thank the Lord for giving me my little angel, well he's not so little. However, Tyler has developed a small hiatal hernia and will need to have surgery again in the future to repair it. His doctor would like to wait as long as possible so that he will be that much stronger to handle this surgery. He also has reflux which may require all we have had to deal with. I do ask that when the time comes you will keep him in your prayers. Even though there is so much more I could say about our situation I hope that this will help someone who is going through this that sometimes things don't turn out so bad.

Written by Tyler's mom, Debbie Oosterhoff (Michigan)

Sunday, April 26, 2015

April 26 - Dear Nicholas Sparks (Guest Bloggers John and Alicia O'Malley)

Dear Mr. Sparks,

My husband and I had been married for 3 years when we decided to have a baby. When I went to the Dr. I found out that I was 5 weeks pregnant. I came home and told my husband, John, and he was on cloud nine from then on. This was in December. In January and February everything was great.

On March the 31th, my OB Dr., Dr. Woodford did an ultrasound and we found out it was a boy. One of the technicians pushed record on the VCR to record the ultrasound. We just couldn't wait till we got home to watch the video. As soon as we got in the house, I went straight over to the VCR, put the tape in and pushed play. When I pushed play there was nothing there but a blank tape. We took the tape out and made sure the tape was ok and it was. Then we made sure our VCR was working right and it was. I decided to call over to the Dr.'s office to tell them about the ultrasound not taping. The nurse who answered the phone, asked me if I wanted to come back the next week for another ultrasound and I said yes. I went back the next week and one of the technicians did the ultrasound and after about 5 minutes, she said "I'll be back in just a second, I have to go get Dr. Woodford." I was starting to worry then. They came back in and Dr. Woodford finished the ultrasound. He didn't say anything until he was done. After he is done, he tells me there is something wrong. He explained it as a "Bubble" in his chest cavity. That's when I start crying. He takes me to his office to talk about what he saw. That was when he mentioned he wanted to send me to a specialist in Birmingham. He called while I was still there and set me up an appointment with The Division of Maternal and Fetal Medicine.

I went to Birmingham for the first time on April the 13th. There are 4 main Dr.'s in this division. Dr. Brumfield, Dr. Wenstrom, Dr. Owen, and Dr. Davis. Dr. Brumfield was the first Dr. I saw and when she did an ultrasound, she found fluid in his right chest cavity and it looked to be pushing his heart a little. That day they did blood work and an Amniocentesis. Before we left, she set me up an appointment with a Pediatric Cardiologist. We went back to Birmingham April the 22nd, Dr. Brumfield said all the test came back fine. She mentioned that they might have to go inside me and through him into his chest area and remove the fluid. When we left there we went to see the heart Dr., he said the fluid has pushed his heart just a little. On April the 29th, we went back to Birmingham and saw Dr. Owen. The fluid was still there and said he would like to remove the fluid, if we would give him the permission. Of course we did. He stuck a very long needle through me and into Jonathan, and removed the fluid. Dr. Owen could not get all the fluid, because Jonathan moved on him. The Dr. got about 80% of the fluid out. He sent the fluid to Children's Hospital for testing. We went back the next week and Dr. Wenstrom, did the ultrasound. Everything seems to be the same, no more fluid has come back. We had to go back to Birmingham May the 25th. Dr. Owen did an ultrasound and he said it looks to be an abnormal mass of tissue, where the fluid was. He then suggested we go see a Pediatric Surgeon, Dr. Keith Georgeson John and I went and saw Dr. Georgeson on June the 23rd. He said he thought that it could be a tumor on his right lung and insisted on me getting steroids. He did say he would be the one who would do the surgery, and that he would be in Children's Hospital for a while.

On July the 18th, I was not feeling very good and John decided to take me to the hospital, here at home. When we get to Eliza Coffee Memorial (ECM) Hospital, one of the nurses in Labor and Delivery checked to see if I had dilated and I had. I was 3. When I got home that night I went straight to bed. I woke up still not feeling good and so I called Dr. Woodford, he told me to come on in to see him. John goes with me and we find out that I'm dilated to 3 1/2. Dr. Woodford leaves the room and comes back and says that I need to go on to Birmingham. We finally get to UAB, Labor and Delivery, the Dr.'s there check me and I'm still 3 1/2. I had to stay over night. When I left the hospital the next day, I went back to see Dr. Owen, he suggested that if I had a place to stay in Birmingham, that I really needed to stay there. The Dr.'s, John and I did not want me to go into labor at home, because they are not able to care for certain things, and I did not want to worry about him being med flied to Children's Hospital in Birmingham and me still be in the hospital at home. So this is when I call Sue Paul, with the Homewood Church of Christ. The church has some apartments available for people who need a place to stay while they are being treated at the hospitals in Birmingham. Luckily, she had one available and we went straight over to the apartments and met with her and signed the papers on it. John' supervisor is the one who told us about the apartments and he called and got us on a waiting list long before.

I had to stay in Birmingham, while John came back home and worked, because he was trying to save his vacation time for when the baby was to come. My dad and mom took turns staying with me during the week and John would come back on Friday after work. That was really hard not having him there with me, but we survived. On July the 29th, I had to go see Dr. Brumfield, she did another test to see if his lungs were good enough to born and if so, they could induce me on Friday, the next day. Dr. Brumfield, said she would call me in the morning, and let me know whether to come to the hospital. She called around 7:05 AM on Friday morning and said be at the hospital at 8:00, we're going to induce today.

John, my mother, and I were at UABI Jefferson Tower, Labor and Delivery at 7:50 AM. The nurse I had induced my labor about 9:30 and the Epidural was given around 2:30 PM. Jonathan Michael, arrived at 5:01 P.M. on Friday, July the 30th of 1999. I did not get to hold him because he was immediately taken to NICU. He was 6 lbs. and 13 1/2 oz. He was able to breathe on his own, but his carbon dioxide was starting to increase a little after 7 hours and that's when they decided to put him on a ventilator. when I was able, my nurse took me down there to see him. He was transported to Children's Hospital the next morning. John went to Children's right when they said that they were going with him. As soon as they arrived at Children's, the Dr.'s did chest x-rays and that's when they found out Jonathan had a Diaphragmatic Hernia. The Dr.'s go and tell John about it. After he found out everything he needed to know, he came back to the hospital where I was at.

When John walks into the room, I see the look on his face and I knew something was very wrong. His eyes start to water and then I start crying, and I said, John, what's wrong with our son. He then tells me he was born with CDH. I did not know anything about CDH at that time. John goes on telling me all about it and everything else. I was asking all kinds of questions, like "Is our son going to live?", "What can the Dr.'s do for him?'. John said they would explain everything later. That afternoon I was able to leave the hospital for a while and go see him at Children's Hospital. The first time I saw him in NICU I cried and I cried, because it hurt so bad to see him that way. He was paralyzed and seemed so helpless. I would stay there with him until it was closing time for NICU and then I would come back when it was time for them to reopen. I would go back to the apartment when the unit would close at 10:30pm. He was on 34% oxygen and the ventilator.

The surgery was scheduled for Monday, August 2nd, but had to be put off, because Jonathan, had yellow jaundice. The surgery was on Thursday, August the 5th. Dr. Georgeson and his team did the surgery and Jonathan came out just fine. The Dr.'s were very impressed with him. He was taken off the ventilator on August the 5th and the oxygen the next day. That was the first time we got to hold him and it felt wonderful. John and I took turns with him and we just kept snapping pictures, one right after the other. Before we went home that night, we got to dress him. He was in NICU for 12 days. The nurses were excellent while he was in NICU. Jonathan went to SCU on August the 11th that afternoon. The next day I tried to bottle feed for the first time and he didn't like it to well. Around 6:00 pm that afternoon he went to x-ray and got the NG tube.

On Friday, Dr. Georgeson said we would go home the next weekend. He came in on Saturday morning and was so impressed with his progress, he said we could go home on Monday. That afternoon Jonathan got sent to a room, so we could get used to being alone with him and learn the monitors and everything else. His daytime nurse was terrible. When she would give him his medicines in his feeding tube, she would inject it so fast that they would back up in his stomach. Then he would throw it up. That's when he had to go back on oxygen. He cried and screamed for 24 hours because he didn't feel good. The Dr.'s decided to put in a smaller feeding tube, because the other tube almost filled his right nostril.

Jonathan got to come home on August the 23th. He is still on oxygen (1/8 liter), and still has the feeding tube in. I stop the feedings once a day or 4 hours and then I bottle feed him. He's not taking much at all, but that's a start. John and I are trying to ween him off the oxygen. I thank God everyday for my beautiful son, Jonathan. We really believe that God had something to do with my ultrasound tape messing up that day. I am very glad to be his mother.

Written by Jonathan’s parents, John and Alicia O'Malley (Alabama)

Saturday, April 25, 2015

April 25 - Dear Nicholas Sparks (Guest Blogger Lori O'Connor)

Dear Mr. Sparks,

Our story begins in June of 1999, when my husband and I went in for a routine 20-week ultrasound. We expected to walk out with a picture in our hands and smiles on our faces, naturally. We already had a very healthy beautiful 2 year-old girl at home and couldn't have been more excited to have our second child. After the ultrasound tech informed us there was a problem and went to get a doctor who immediately did a level 2 ultrasound, we were told right there of our daughter's CDH diagnosis. After going to see my regular OB, he had informed us that there was a nuchal thickening (thicker neck tissue), which increased our chances of Down syndrome to a 20% chance. So a few days following I had an amnio done. We asked for FISH results, which gave the results back in 3 days for the major chromosomal defects. Needless to say, it was the longest weekend of our lives waiting for these results. And to top it off, I was a bridesmaid in my sister's wedding that weekend, so we didn't want to tell the rest of the family, or they would have been too upset at the wedding. So we just told our parents and hid it from all 7 of my siblings! (Although now they say they knew something was wrong that weekend-- I guess you can't hide sleepless nights from those who know you best.)

After receiving the phone call from the genetic counselor at Northwestern Hospital in Chicago that everything with the chromosomes was fine, we then just had to wait out the next 20 weeks until my due date in October. We were referred to the best pediatric surgeon at Children's Memorial Hospital in Chicago who would do the surgery. After meeting with her and several of the other specialists at the hospital, we were terrified to have our baby, as she was so safe inside of me since she didn't need her lungs then.

I was scheduled to be induced on October 20th, but was already having contractions before even getting there that morning, so I needed very little pitocin to get going. After a very easy labor and delivery, 5 hours total and only 7 pushes, out came our beautiful 7 lb 2 oz baby girl. I was barely able to get a look at her before they took her to another area in my room to work on her right away. There were so many specialists in the room when she was born that it was very overwhelming. But they all knew exactly what they were doing, and I thank God that we knew ahead of time, or it would have been even scarier. They immediately intubated her and paralyzed her. I kept asking if she was going to make it, and they just kept telling us they would do everything they could for her.

After taking her to the NICU, I was then given a room on another floor instead of the maternity ward. This really meant a lot to me that I wouldn't have to see or hear the other babies when I was in such a state of shock and scared to know whether our baby was going to live or not. After stabilizing her as best they could, they transported her by ambulance to Children's Memorial Hospital neo-natal intensive care unit. My husband Peter followed her there while I had to stay at Northwestern to recover for the night. Luckily, one of my best friends, Heidi, came to stay with me and bring me dinner, so I wouldn't be all alone there. I received phone calls about every 15 minutes from Peter with updates on Clare's condition, as it was changing constantly those first few hours and days. I was released from the hospital the following morning and was never prepared for what I saw-- my tiny little angel lying there with tubes coming out everywhere, hanging on for dear life. The doctor had informed us that she was not yet stable enough for surgery, and she could "crash" at any moment. So we spent the next five days with lots of ups and downs-- blood gas readings, nitric oxide, etc.-- but luckily she just escaped having to go on ECMO.

On day five, she had her repair surgery, and after about 3 and 1/2 hours we received word that she was doing fine. The surgeon did say her hole was so large that nearly the entire diaphragm was missing, and they had to use a large piece of Gortex to patch it up. Her recovery actually went very smoothly after that, as she was home from the hospital in 21 days! The nurses, who were absolutely wonderful in the NICU, couldn't believe how well she responded to everything. They said she truly was a fighter, and that made a difference in her recovery. After pumping breast milk every 3 hours for 21 days, I was finally able to nurse her, and it went very well. She did come home from the hospital with a feeding tube in, just to make sure she was getting enough, but it was out in three days, and she ate much better after getting it out. I did rent a baby scale from a lactation consultant's office near our house, as I wanted to make sure she was gaining enough weight every day. We were lucky that there had been absolutely no complications at all, including reflux for the first 8 months. Then they couldn't figure out why she wasn't gaining weight and was only 12 lbs at 8 months.

It turned out, after getting an x-ray, that her Gortex patch had come loose, and her stomach and intestines were back up in her chest cavity. We didn't expect this to happen, as it only happens in 20% of babies within the year after their first surgery, so we were very nervous and shocked. We had to go back to Children's for her second repair surgery. Since there was more muscle now to sew the patch to, this one should hold longer, we are told, but they can't predict how long unfortunately. We just have to take it one day at a time. They will give her an annual x-ray to make sure it's still in place, since her patch is so large.

We have been so blessed by God to have such a beautiful, happy baby. She has such an incredible personality-- I can't even imagine not having her in our lives.

Written by Clare's mom, Lori O'Connor (Illinois)

Friday, April 24, 2015

April 24 - Dear Nicholas Sparks (Guest Blogger Susan Nugent)

Dear Mr. Sparks,

Ashley was bom on New Year's Day of 1997 and thus began her struggle for life. What is supposed to be a joyous occasion turned into a horrible nightmare. I had a uneventful pregnancy with a sonogram at four months. Nothing was found. I was concerned about birth defects as my last pregnancy resulted in my youngest son having a bilateral cleft palate. The doctor assured me to not worry. Further in my pregnancy Ashley was extremely active. I often wonder if this meant anything in hindsight. When she was born the doctor gave her to me and for about 20 seconds I held my fourth child. I noticed she was struggling to breathe and she was immediately taken away and suddenly many people were in the room. My husband heard one of the doctors say he couldn't hear a heart beat. We later learned he couldn't hear her heartbeat because of her heart being displaced. She was life-flighted to a nearby hospital for surgery, which she had at four hours old. She made it through but was still very sick. We managed to get her transferred to Cardinal Glennen Hospital in St. Louis. What a blessing that was! The doctors and nurses are extra special there. There they were going to try nitric oxide so as to avoid ECMO. Unfortunately it didn't work and at three days old Ashley was placed on ECMO. Ashley did great on ECMO and managed not to have any of the awful side effects that is associated with ECMO. On the sixth day, the surgeons were happy with her blood gases and said she could come off.

Then began the waiting for Ashley to be weaned off the vent. After about six weeks she came off. I never forgot the day she came off. They had put her on C-PAP. She looked like something from outer space! I had a feeling she would take a pacifier. The nurses prepared me for disappointment, but they were the ones surprised! She immediately took it and sucked noisily on it. That was one of the happiest moments in my life! Thankfully my favorite nurse in the world grabbed somebody's camera and took a picture of her sucking on that pacifier. I am forever grateful for that picture. It was then I knew she would make it. Now the next bump in the road was getting Ashley weaned off TPN. It took a little longer than the doctors expected because she kept draining fluid from her chest tube (she had her chest tube in for about seven weeks!). I can't remember exactly the reason why the doctors said she couldn't eat regular formula or breast milk, but she couldn't. That was very disheartening because I had saved a lot of breast milk. Finally she got to have her first bottle at about eight weeks old and of course it came right back up. The doctors put her on Zantac and Cisapride. That worked but it was still difficult to get her to eat much at one time so she was put on high calorie formula. Slowly she took more. You know you are ready to leave the PICU when you get moved around a lot! One night alone, Ashley got moved about three times and she couldn't be moved to other unit on the floor because they were so full! Those poor nurses, they do such a fantastic job and work such long hours. Finally she was moved to a regular floor. Another three weeks of trying to get her to eat and we finally got to go home. That was overwhelming! We came home with oxygen, a pulse-ox machine, and a heart monitor. We have had many ups and downs with two emergency surgeries for bowel obstructions. Because of the initial surgery, scar tissue had formed in Ashley's belly causing adhesions to form. This adhesions cause the bowel to stick together causing her bowel to twist. The first one was terrible. She had diarrhea and I thought she had a bug. But the diarrhea didn't go away and then one night she started to scream in pain. Our local hospital was ill-equipped to deal with Ashley. Unfortunately, we waited til morning to get her to Cardinal Glennon. She was very sick and needed surgery immediately. For the next six months, we dealt with tummy aches and several trips to the local ER. One trip led to an ambulance ride to Cardinal Glennon. I felt like a paranoid mother at this point. Nothing was found. A week later she couldn't keep anything down, so back to the ER. This time a helicopter ride to Cardinal Glennon was in order. She recovered so much faster with this surgery.

Written by Ashley’s mom, Susan Nugent (Illinois)

Thursday, April 23, 2015

April 23 - Dear Nicholas Sparks (Guest Blogger Chris Nowakowski)

Dear Mr. Sparks,

Ten months ago, our first baby was born. Luke came out in respiratory distress. The Ob/Gyn told the nurse to get the pediatrician. Within seconds, he and about six nurses came running into the room. By that time, the anestesiologist was "bagging" him. After several minutes he started to breath and the pediatrician said he needed a chest x-ray. We found out much later that they had to put him on life support before they even took the x-ray. The pediatrician said Luke had gone limp in his arms and didn't think he would make it. Twenty minutes later he told us that Luke had a CDH and that he needed surgery and would need to be transferred to another hospital forty minutes away.

I had only seen Luke for about ten seconds after he was born and then again four hours when the transport team brought him to my room in an isolet. They opened the door and I was able to touch his arm, I hadn't even noticed the tubes and wires that surrounded him. The doctor said that they needed to go and that "you have a very sick little boy". I still had no idea how serious this was, I guess I was in shock. I thought he would have surgery and would be home in a week. My husband went with Luke and my mom stayed with me. When I got home the next night, it hit me - "why isn't our baby with us? This isn't the way it was supposed to happen!" All I could do was cry and ask why. My stomach had a constant knot in it and I swear i could feel my heart breaking.

Thirty four hours after Luke was born they did the surgery. The doctors had thought both lungs were fully developed but after surgery, the doctor said the left side was only 20% the size it should be and the right side was a little smaller than normal because his heart was pushed over. They told us that fortunately only his intestines had gone into his chest. The surgeon said that the hole in his diaphragm was so large that he had to use a gortex patch to permanently repair it. He also told us that he could not fit the intestine where they belonged so he had to make a ventral hernia. This will repaired when Luke is about one year old. It will be his fourth and hopefully final surgery (original CDH repair, 2 for ECMO). After Luke's surgery was when we had learned about ECMO. We kept praying that he wouldn't need it because the way the doctors talked to us about all the possible complications from it, made it sound like a definite death sentence. When we left the hospital that night, Luke was doing well. Around 11:00 that evening the surgeon called us just to let us know he was doing great and that he didn't think ECMO would be needed. At 3:40 am the hospital called and said he wasn't doing well and that they needed our permission to put him ECMO. We hung up the phone and started to cry and pray. Even now, the memory of this is so painful. When we arrived at the hospital, they had just finished surgery and told us if we didn't give our permission to go on ECMO that Luke would have already been dead. Thankfully, he was only on it for 3 days which was the minimum they said he would need. Seven days later he came off the ventilator and I was able to hold our baby. I thought it would be this really emotional time it wasn't. I was too worried about pulling out his chest tube or his NG-tube, etc.. I felt guilty and thought that there must be something wrong with me. I kept thinking "don't you love this baby? Why aren't you crying? After all, it's been twelve days since he was born and you're finally holding him!" I know now that it was ok to feel that way and that there wasn't anything wrong with me. The next day my husband held him for an hour. He didn't want to let him go. He felt bad because for the first several days of Luke's life he couldn't be held and he wanted him to know he was loved. I saw a side of my husband that I had never seen before, a different kind of gentleness and love that just seemed so natural.

When Luke was about four weeks old he no longer needed oxygen but needed a daily dose of Lasix & Theophylline to help him with his breathing. In addition to CDH and ECMO, Luke was treated for anemia, jaundice, bradycardia, thrombocytopenia, pleural effusion, gastroesophageal reflux, and small left lung. After 5 and half weeks we were finally able to bring Luke home. It seemed like forever but considering the fact that they had told us he would probably be there for three months, it was no time at all. Luke was still on the two medications for his breathing, he had an NG tube and was on Cisapride which helped his reflux. One month later he was off NG feeding and by the time he was four months old he was off all of the medications.

Developmentally, Luke is where he should be for a ten month old. Actually, he is already walking so he's a little ahead of schedule. He suffered from hyperontia due to his ventral hernia so he sees a physical therapist but is doing much better. He also sees an occupational therapist because he tends to keep his left hand clenched. The doctors don't think it's due to the permanent cutting of the internal jugular vein and coraded artery in his neck but they don't know for sure. Luke will use his left hand to pick up things but tends to keep his thumb tucked in and primarily uses his right hand. If anyone else has experienced this problem, we would love to hear from them.

Right now we are trying to get him through the winter without getting sick. We don't take him to stores and we only see people if they aren't ill. We have had many last minute cancellations because of someone getting sick. The doctors say we should be able to treat him like a "healthy" child by the summer time. We can't imagine letting people touch him without washing their hands first. We don't think we will ever be ready for that. When the time comes, we'll all be waiting for about four days holding our breath to see if he caught anything. We wonder if we'll ever be able to forget about the pain we've gone through and really be able to treat Luke like a "healthy" person. We wonder if we will see him get sick and not panic.

It's God's grace that has gotten us this far so we will just have to continue trusting Him. When we get upset we turn to Psalm 139: 13-16 and it reminds us that this wasn't an accident or a "freak of nature". We truly feel blessed to have Luke in our life, he has brought us more joy than we even could imagine. He makes us laugh everyday and we thank God for his precious life. We sometimes feel guilty because we get sad and still ask "why" when we know things could be so much worse. We are very fortunate that Luke is as healthy as he is and is not showing any side effects from ECMO. We often pray for the other parents and their "Cherubs" that they would be as blessed as we are and that someday they will be able to put all the bad things behind them and cherish the precious time they have together.

Written by Luke's mom, Chris Nowakowski (Illinois)

Wednesday, April 22, 2015

April 22 - Dear Nicholas Sparks (Guest Bloggers Patty Tuttle-Newby and Darek Newby)

Dear Mr. Sparks,

Ben was born 4 weeks early on October 4, 2001, after about 17 hours of labor. We were able to hold him and pose for a family photo with his big brother before they took him to the NICU for a closer look because he wasn’t crying and was having a little trouble breathing. Our older son, Sam, had been in the NICU, too; he was 5 weeks early and had trouble maintaining his body temperature, so we weren’t too concerned. However, after an hour or so, the NICU doctor came up to tell us the bad news: Ben had a left-sided diaphragmatic hernia; his spleen and intestines were in his chest cavity; his left lung was compressed; and, his heart was pushed to the right. He was put on pain medication, a sedative and a ventilator right away, and would need surgery to repair the hole and put everything back in place.

We were stunned and surprised. My pregnancy had been relatively uneventful, although I had had some unexplained pain late in the pregnancy and had measured big consistently. I had two Level II ultrasounds (one only 4 weeks before he was born), an amniocentesis and nothing was ever found to be wrong.

When Ben was one-day-old, the doctors discovered he also had Persistent Pulmonary Hypertension, and another medication was added to the mix. We were not allowed to hold him, or even touch him; when we did – his blood pressure skyrocketed and his oxygen saturation level went down. At 4 days, his hernia was repaired. The surgeon performed it laproscopically, since that would give Ben smaller scars and would also avoid having the doctor actually touch the small bowel, which could cause small bowel obstructions later in life. Ben was one of the youngest babies in the country to have this done laproscopically.

The surgery went well, but took a long time -- almost 4 hours! Afterwards, the surgeon told us that things had gone well, but that he had had to make a slightly larger incision at the end to get the spleen back in place. We went home that day relieved, sure that now that all of Ben’s parts were back in the right places, he would recover quickly and come home to us. We were wrong. His saturation levels continued going down, and he was put on an oscillating ventilator. It was very upsetting to come in that day and see his little body vibrating on the warmer. Then they tried nitric oxide. That also didn’t really help and we spent a very long night at the hospital waiting for the results of hourly blood gases.

When Ben was 6 days old, they told us that he might need ECMO because his saturations continued to be low, so he would need to be transferred to Children’s National Medical Center, a children’s hospital in Washington, D.C. We were devastated to think he might need to go on ECMO, which we had thought of as a last resort. We were also scared because the hospital was in D.C. and this was right after the terrorist attacks of September 11. But off Ben went in the ambulance. We met him there later and the NICU fellow told us Ben was “marginal.”

Thank God for the doctors and nurses at Children’s. They nurtured our family through our ordeal. The doctors answered all of our questions until we understood the answers (and we asked a lot of questions, over and over again). The nurses took great care of Ben, dressing his bed with cute baby blankets, making cards for us, and encouraging us to bring in pieces of home for Ben.

He did need to go on ECMO at 10 days old. The doctors told us Ben had a 50% to 60% chance of surviving – better than even odds, but not high enough to bring much comfort at the start.

For the first day or two, the doctors had trouble getting the cannulas in Ben’s neck positioned correctly, and we worried that the treatment wasn’t going to work. We sat at his bedside day after day, talking and singing to him and willing him to live. We made cassette tapes of ourselves reading stories with our older son and of our older son singing and talking, and the nurses played them next to his bed when we couldn’t be there. Our older son, Sam, bought him Speckles the hippo, a special bed-friend to keep him from getting scared at night. I pumped breast-milk every 4 hours and froze it. I produced so much milk that the hospital told me to stop bringing it in; I had used up my allotted space in the deep freezer. So, I started storing it at friends’ houses. I kept pumping, even though Ben couldn’t yet drink the milk, as a sign of faith that one day soon he would use it.

We found it was essential to develop a good routine for going to the hospital and for coming home; our other son needed his parents too, and we needed time away from the hospital to help preserve our physical and emotional strength. We depended heavily on friends and family to watch Sam, to clean our house, to prepare us meals, and to give us moral support throughout our ordeal.

We cried a lot, and we comforted each other. My husband and I had different ways of coping with the worry and the stress and we found it was important to use whatever coping tools we could find. It was so hard to remain hopeful at times, but we knew we couldn’t give up on Ben. Perhaps the hardest time we can remember was during a discussion with the hospital counselor about what might lie in store for Ben. We needed to know that the doctors wouldn’t give up on Ben before he had every chance to recover and get well. The counselor assured us that they would keep working with Ben as long as we wanted them to, but she also told us to always try to keep in mind what would be best for Ben – that there might come a time when we wouldn’t want to ask Ben to continue on. That was a scary thought, but also an enlightening one. It refocused our attention on our son and what was best for him and not just on how his predicament made us feel.

As Ben slowly made progress, they reduced the flow and then the saturation levels until, after 11 days, he was ready to come off ECMO. But the doctors warned us that progress would be fitful, and 5 days after coming off ECMO, Ben developed chylothorax – a leakage of fluid from the lymphatic system that gathered in his left chest cavity and collapsed his left lung. He had to have a chest tube put in to drain the fluid, so we still were not able to hold or feed him.

Finally, after 33 days, Ben’s saturation levels were good enough that we could take him off the ventilator and move him to a CPAP – and we were able to hear him cry for the first time! When I called that night to check on him, the nurse held the phone up to his crib and said, “Do you hear him? That’s your baby crying.” Never, ever, has a baby’s cry sounded so good! The next day, Ben’s chest tube came out. I got to hold Ben for the first time since his birth and my husband got to hold him for the first time ever. From then on, we pretty much held him constantly when we were at the hospital. We tried feeding him with a bottle at 37 days, but his blood pressure skyrocketed and he had a lot of spit-ups, so we backed off. An upper GI and a renal ultrasound both showed nothing wrong, so we continued to hope and pray that he would continue improving.

At this point, we were pretty sure he would be okay, but we kept running into roadblocks that slowed down his homecoming. T his was hard to bear; we kept getting our hopes up for a Christmas homecoming and then some other problem would crop up that would make reaching that goal uncertain. A week and a half later, we restarted Ben’s feeds through an NG tube in his nose. It was slow going; he had a hard time digesting the breast milk, and after 3 hours, he still had a lot of residue in his stomach. Still, he was moved into a real crib from the warmer and that helped improve our spirits. At 47 days, he was taken off the nasal cannula and was able, finally, to breathe on his own! Two days later, it was Thanksgiving and Ben started really drinking his bottles – 9 cc’s in 2 hours was a huge victory for Ben and for us – and he started smiling at us.

At a little over 7 weeks, Ben was moved back to Fairfax Hospital, where he was born, to continue learning to eat. A day later, he breastfed for the first time. Two weeks later, he came home.

Since coming home, Ben has had only one scary cold when we had to go to the doctor’s in the middle of the night for Albuterol and oxygen. He has reflux, and is on Zantac and Reglan to help with that. I can tell that he really needs it, too, because when he gains too much weight for his dosage, he starts regurgitating a little and sounds very slushy. Because of some early delay in gross motor skills, a physical therapist had been visiting Ben once a month or so, but Ben long ago seemed to recover any ground he lost to those first few difficult months. At 11 months, Ben was dismissed from physical therapy because he had already reached his 13-month milestones.

A friend asked me recently if Ben is really fine. I was happy to tell him that yes, he really is fine! He is a normal little boy who giggles at his brother’s antics and loves to be out and about. He has a huge smile that melts your heart; he tries to eat everything he finds on the floor, and tries to climb on everything. In other words, he’s totally normal, except for his souvenir scars. And every time we see those scars on his chest and that long scar on his neck that marks him as a CDH survivor, it reminds us of how precious life is and how lucky we are to have this beautiful boy with us.

Written by Benjamin's parents, Patty Tuttle-Newby and Darek Newby (Virginia)

Tuesday, April 21, 2015

April 21 - Dear Nicholas Sparks (Guest Blogger Shankari Murali)

Dear Mr. Sparks,

I often find myself saying, this is my miracle baby. The miracle seems to have begun real early. Everything about his birth was miraculous- in that I hadn’t even planned on his being born! I was quite upset when I was late. A quick lab-test after two weeks and my fears were confirmed. Ambled across to a Doc, and she casually mentioned a MTP. Yes, those of you who may be wondering, a Medical Termination of Pregnancy is quite a routine method of birth control in India! I was outraged at the terrible suggestion and within moments was determined to go ahead with the pregnancy, whatever it entailed.

Of course, it didn’t help that my husband was away for the first 6 weeks of this pregnancy. Those crucial 6th to 8th weeks of gestation was just when I was trying to come to terms with the fact that there would be another baby. And while I did feel tender and protective about the baby, I was rather embarrassed as I began to show too soon. The terrible nausea did nothing to help! But I was extremely regular about Folic acid and my diet comprised more or less fully of cherries, pears, salads and other such light stuff, which I was able to eat. Being a non-smoker and teetotaler, I had no fears of exposing the foetus to any noxious substance and just wanted to increase my hemoglobin levels, get adequate proteins and calcium and NOT get stressed about anything. By the fifth month I was huge (no polyhydramnios - just BIG) and the movements began. My daughter enjoyed the tiny movements and began looking forward to her sister! In the 38th week, I was huge and uncomfortable but going about all my work as usual. I was determined to work till the very last day but was so HUGE that I was making a lot of people quite uncomfortable by going about my work. The routine U/S at the 38th week showed a fully developed large breech foetus, head not yet fixed, nearly 4.00 kilograms and suddenly, unusual polyhydramnios. The radiologist appeared quite agitated and felt I needed to be induced IMMEDIATELY. Needless to say, I had high regard for his views. It was late evening and we rushed to my Doc, Dr. Saroj Aron. She is a nice gentle lady and wanted a trial of labour. She asked me to go in for yet another U/S (my fifth) on Monday, the 18th January, 2000 to assess the approx. fundal height and weight, to be performed in the hospital where I was registered. The radiologist, a senior and experienced person was very thorough. He was clear that it was a big baby, the breech resolved but brachycephalic and ready to be induced. He also confirmed the polyhydramnios and was warming up to the shadow in the pulmonary region when my Doctor, who was present throughout, intervened and whisked me off. I was very unhappy that this radiologist was seeking some abnormality where none existed (how naïve, I was).

They prepared me nice & early at 6.00am on 20th January, 1999 and started me on drip. At 11.30 the waters broke and how!!! The entire room was flooded- maybe 5 litres, maybe more.J After a smooth 38 weeks of pregnancy, 5 ultrasounds, I was blessed with a very sick baby boy on 20th January, 1999 after an emergency C-section (non-progression of labour and lower segment distention). I was not given the epidural I’d feebly requested so was totally out when this tiny guy got into my life! How I wish I’d insisted on an epidural but then again, that’s the way things were on that fine day. He was born 21” and over 8 and ½ pounds and the Apgars were 6 and 8 at 1/5 minutes and I am told that he was a big pink baby- no hint of blueness. He had a whimper of a cry for such a big baby and the heart was heard much better on the right than the left. I was told by other medical professionals that both these factors COULD have been overlooked as the baby ‘appeared’ healthy. Thank God that they were not! Enter our hero- Dr. Vivek Bagga, the Pediatric Consultant, who immediately rushed out to where my anxious husband and Mother were waiting and shared his fears. He asked for an immediate X-ray. Immediately, he shared the options available with my husband and once the pediatric surgeon was decided upon, he took it upon himself to contact the surgeon and asked him to come over and see whether the child was OK for surgery. Is it any wonder then, that we love that doctor?! In an hour, Dr. B.D. Dwivedi, a highly experienced and skilled Pediatric Surgeon, examined him and gave a fair prognosis. He was taken to the Indraprastha Apollo Hospital in an ambulance by my husband where a team was waiting for him. The immediate problem was the tremendous pulmonary hypertension (PPHN). He also suffered a few internal bleeds, though I’m not too sure if they were spontaneous internal hemorrhages or those triggered by some not so clean aspiration efforts. In addition to the High frequency oscillating ventilation, he received dopamine and dobutamine for the PPHN and antibiotics, morphine and painkillers for infection and pain management. There is, no NO used in India, at least for neonates. ECMO is still considered an exotic thing in India and the cost involved (in terms of the arteries sacrificed) is touted as the medical reason against the use of ECMO by the medical practitioners.

His surgical repair was performed on the morning of 23rd January, and he followed a textbook recovery. He was extubated on the 26th and was off oxygen on 27th night itself. I saw my baby only on the afternoon of the 23rd - I realized that I had been lucky enough to witness one of His miracles and that no power on earth could have stopped my son’s life as he was divinely blessed! BTW, that’s what Anugrah means- a divine blessing! Then came the next battle- of feeding him, warding off post-op infections and ensuring that he put on some weight before being discharged. The neonatologists, Drs. Sushma Kaul, Vidya Gupta and Anjali Kulkarni were extremely positive I moved into the hospital on the 27th and was glad that the EBM was being used to feed the baby thru’ his NG tube. All through the preceding days I’d been manually expressing and wasting all the precious milk, which was meant for my baby. He tolerated these feeds quite well. Breast-feeding was extremely difficult to establish because my primary engorgement made me hard and holding the baby with a drainage tube, plus scores of other tubes running this way & that was extremely difficult. He would get frustrated with my attempts at feeding him and would cry till his UAC started bleeding. I was extremely helpless and didn’t want to continue with what was a torture for all concerned. Thank God, Dr. Gupta intervened and offered a bottle for the EBM. It was an extremely trying time. Once a fungal growth was suspected in a blood sample and they wanted to do a dural tap for CSF. I was asked to sign the form for it and boy o’ boy, did I get into the mom from hell mode! (I came upon this perfectly apt phrase much later, thanks to Dawn) The Registrar, Dr. Krishnan (God bless him!) spent an hour trying to reassure me that he would do a clean tap and not fool around with my son’s Cerebro-Spinal Fluid. Soon the neonatologists were joking that with his increasing weight he should be in PICU not NICU! To cut a long story short, by the grace of God and thanks to the tremendous faith & support of all those around us, I went back home, with a baby, on 8th February, 1999. The major factors for his survival appear to be: full-term growth, good birth weight, late herniation and immediate detection of what was a huge defect. Anugrah is a really happy little kid with no feeding issues or developmental delays. The pectus seems to be resolving and there is no indication of scoliosis in spite of his terrible bowlegs.

Written by Anugrah's mom, Shankari Murali (India)

Monday, April 20, 2015

April 20 - Dear Nicholas Sparks (Guest Blogger Sharon Munson)

Dear Mr. Sparks,

Looking back on our experiences now, January 1998 seems like it was eons ago, simply because of where Michaela was and how far we’ve come in such a short time. I had a normal, healthy pregnancy. Nothing was ever detected during my first ultrasound at 13 weeks or during my second ultrasound the morning of Michaela’s birth which was mainly to check for the position of the fetus. Only twelve hours after I felt the first pain, Michaela was born. She was in good voice when the cord was cut. She was weighed and measured, 7lbs, 8 ozs, and 21 1/8 inches long. Her APGAR scores were 3 and 9. Then they gave her to me. My husband got two pictures of us together before I casually commented on her dusky color. Before I knew what happened, they took her away to the NICU to run several tests to see if she could keep her color. When all their tests failed, they gave her two chest x-rays which showed a diaphragmatic hernia. The attending physician came in to my room about 3 hours after she was born to tell us of the problem. My husband and I were totally numb, and I can’t remember too much of what happened after that, other than my husband’s stepbrother asking all the questions. (He is also our assistant pastor, and he needed to know what to tell our minister). They suggested sending her to the University of Virginia Medical Center (UVA) since they had 2 ECMO machine, but they asked what we wanted them to do. We had to plead ignorance and put it in God’s hands. So they called a ground team from UVA up to get her.

In the meantime, while I was being helped out of bed by the nurses, the attendants in the NICU were taking Polaroid pictures of Michaela for us. I was eventually moved to a mother-baby suite and at 8:30 p.m. the crew from UVA came into my room with Michaela in a mobile incubator. My husband had to physically take my hand and put it on the baby because I was apparently afraid to. I guess I was still in shock. They left with her, and then everyone else left. The silence was deafening. I saw her again four days later. The NICU staff at UVA was so sensitive to our feelings. They knew my husband was already there once, the day her hernia was repaired (which was the day my parents came down from Pennsylvania to take me home), but they knew neither one of us had ever seen a child on ECMO, much less our own. So they had a cloth placed over the cannulas so that we would not be overwhelmed by the sight. They knew, in time, we would be curious to see how the ECMO works.

Michaela was on ECMO for a total of 6 days. They were the longest 6 days of our lives, they seemed to drag on endlessly. But once she was taken off the ECMO, Michaela reached one milestone after another. She was off the ventilator by the following weekend, just in time for her grandmothers to come down and visit with her. That same weekend, a g-tube was installed, but was only used once. She ended up nursing directly from me right away! Words cannot express how thrilled I was! The next two weeks were spent trying to wean her off her fentanyl drip. It was an extremely slow process. But eventually the drip was turned off, and arrangements were made at UVA for us to stay overnight rooming in with Michaela the night before her release.

On January 23rd, they let her go home. I was so thankful that she had received such good care at UVA. Nurses even held workshops for us, educating us on life-saving techniques, proper use of car seats, etc. They took such good call of us, all through and by the grace of God, of course. Once home, Michaela had one good week of perfect health, smiling at me whenever I would change her. Then she got a cold. Once her cold went away, she enjoyed good health all winter long. Of course, we only took her out for checkups. In fact, it was mid- or late-March when we took her to church for the first time. She developed colic the last week of March, we dealt with that during all of April. Then once April came in, she started teething. She’s only had once other cold since.

At her last post-op checkup at UVA on May 18, her neonatologist reported that some of her developmental skills are a month ahead of schedule, and her pediatric surgeon said that her lungs are up to approximately 75-80% capacity (up from 30% at birth), therefore her lungs are not in proportion to the rest of her body. But she’s growing lung every day. He also said that her left lung is still hyperexpanding.

Michaela is living proof that God is able. She has gone from a near-death situation to having hardly any lasting effects from the CDH she was born with, other than her scars and the lack of a pulse on the right side of her neck. When she was taken off ECMO, her pediatric surgeon tried unsuccessfully to reattach the severed ends of her carotid artery. So the ends had to be ligated and attached to the inner wall of her neck just behind her left earlobe.

Written by Michaela's mom, Sharon Munson (West Virginia)

Sunday, April 19, 2015

April 19 - Dear Nicholas Sparks

Dear Mr. Sparks

It's Congenital Diaphragmatic Hernia Action Day!   Look at all these wonderful families taking action in the fight against CDH:

Dawn M. Torrence Williamson
CDH Mom Raising Awareness