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01-23-2007, 04:45 AM
[left:fe9271ebb7]http://www.cherubs-cdh.org/Album/new/blaylock-zach.jpg[/left:fe9271ebb7]I just became aware of your existence this week! How I wish I'd known about a support group nine years ago! My son was diagnosed in utero at 27 weeks. As seems to be typical, this was picked up during a routine ultrasound exam. This was my eighth pregnancy. I had four girls and three boys - all healthy! So, you can imagine my excitement to learn that I was going to have another boy! I will never forget how fast that moment of joy turned to terror and in just a matter of seconds. The exam was taking so long that I became apprehensive. Then the technician called in a physician who explained the possibility of diaphragmatic hernia. I was sent to my Obstetrician's office immediately. There my doctor told me I would need to be followed by someone specializing in high-risk pregnancies. I was in the state of shock! I was so sad! I saw the specialist and he explained that the prognosis was grim. We were offered the option of going to California for the then experimental in utero surgery. At that time it had only been attempted four times; with no survivor's. I elected to go the conventional route. We consulted with the best pediatric surgeon and neonatologists. I saw a nutritionist to make sure that I was doing everything possible to help my baby. I had weekly ultrasound exams. Everything looked pretty stable until I reached 37 weeks. At that exam we found that all of my son's organs were now in the chest cavity. I was scheduled for induction the next morning. As is described by most everyone in our situation, I had a really difficult time forcing my baby out into the world knowing what he would face. At birth Zach didn't make a sound. He was immediately bagged and preparations for surgery were initiated. On the way to the O.R., Zach's lungs "blew". Chest tubes were inserted in the hallway. He was in surgery for about three hours. All went well. There was a healthy right lung, but the left lung was very small and malformed. A lobectomy was necessary. Zach was very sick those first few weeks. It became very difficult to find I.V. sites. Sometimes they would try for hours. This broke my heart! There was a moment of levity though. My seven little ones at home had made a tape recording for Zach. On it they sang to him. When the nurses would play this tape, Zach's vital signs would stabilize. Apparently he was soothed by the familiar voices he had heard in the womb. However, they had to quit playing the tape, because the tiny "preemie" in the next bed would become hypertensive when she heard the tape! I often thought about the fact that the "world" behind the NICU doors is one that most people will never know anything about. To see babies fighting for their life each and every day is so difficult. Then there are the worst days, when someone with whom you have been comparing "notes" daily looses their beloved child. Zach's hernia was very severe, yet his course of recovery went quite well. He was intubated for three weeks. ECMO was not in use at this time, so thankfully we didn't have that issue to deal with. Finally at three weeks, when Zach was ex-tubated, I was allowed to hold him. I have felt the strange guilt expressed by others because the moment was not the joyous experience I'd anticipated. I was terrified that I would hurt him or dislodge a tube. After a month in NICU, Zach was transferred to a level two nursery. Here the challenge was to get him to feed. He had an oral aversion. Also, because he breathed in excess of 60 times a minute, Zach was too exhausted to nurse. So, we continued the NG feeds. After a month of this, we were allowed to go home. This was not the joyous moment I had waited for either. I had to face the prospect of giving the NG feedings around the clock and administering all of the other medications as well. I was so scared! I knew of no one who had had such a condition. Every medical professional I spoke with told me that survivors of CDH are rare and that there is not a lot of helpful information. One doctor suggested that we would be kind of "writing the book". This was so frightening!
I was so determined to breast feed Zach, as I had his siblings. So, while I gave the NG feedings, I "pumped". I would coax Zach into nursing even while he was being tube fed. I hoped this would be comforting to him. Weight gain was painfully slow. Zach vomited after every feeding. All of these years I have felt so guilty about that. I thought that perhaps I had mismanaged the feedings. I was so relieved to learn that this is a common problem with CDH babies. Months passed, and Zach still had to be NG fed. I was so discouraged. Neither my pediatrician, nor any of the other doctor's I consulted could advise. Our GI doctor was supportive, but couldn't make a prognosis. When Zach started walking at nine months, his attachment to the pump for 12 hours a day became a real challenge.
I was very careful about exposing Zach to illness. For that reason, we kept him away from crowds for the first year. Despite the precautions, Zach was hospitalized a few times that first year. He had pneumonia, a collapsed lung and roto-virus. Zach was put on medication for reflux. He was given nebulizer treatments when necessary. All things considered though, Zach made an amazing recovery. Zach did not have any developmental delays, except for the feedings. Finally, when Zach was 18 months, our GI doctor suggested that she insert a "button", for feeding. I consulted with all the doctors and they were in agreement. However, when I asked the surgeon, he suggested we pull the NG tube and see what happens. To my surprise Zach gradually began to eat and to breast-feed. In fact, I couldn't wean him until he was 2 1/2.I have always wondered why we weren't advised to do this sooner. It relieves me to read of others who have faced the feeding dilemma for an extended time. Now at least I don't feel so guilty! Zach is now almost ten years old. His right lung did not grow to compensate for the hypoplastic left lung, as we had hoped. Never-the-less, Zach is in excellent health! He actually is the fastest runner in his class. He is amazing with a skateboard, surfboard and mountain bike. He is in all accelerated classes in school. He is the most incredible kid! I am so grateful!
The only thing that concerns me now is his heart. This is the real reason for my writing to you. A year ago, Zach experienced what he described as an incredible pressure in his chest. He said it felt like his heart was being squeezed. Of course, I consulted a pediatric cardiologist, (Texas Children's Hospital-Houston). After doing a complete work-up, it was found that the right side of Zach's heart is enlarged and so is the right ventricle. We know that Zach does not have pulmonary hypertension. The doctor says that the difference in Zach's heart was probably the result of CDH and probably of no consequence. We were instructed to have periodic check-ups, including echocardiograms. We were also told of things to watch for. However, Zach need not be restricted in any way. Zach has these episodes periodically. (Incidentally, it was diagnosed as benign chest wall syndrome.) I wonder if others have experienced similar episodes. Also, do you have any information regarding variation in the heart's anatomy caused by CDH? I can't tell you how much I would appreciate knowing!
Finally, I would like to share another aspect of my personal experience. I do this not for sympathy, but only in the hope that it will encourage others to know that they can find the strength to care for there precious little one. From the moment I was discharged from the hospital until the time Zach came home three months later, I spent 11 hours in the ICU nursery each day. I drove myself to and from the visits, never leaving before 10:30p.m. My husband, (now "ex"), never once visited the hospital with me. He told me he was working over-time to pay for all the extra expenses. I had seven young children at home too. My ex never once helped with a feeding or with much of anything else. Once when Zach needed an emergency trip to the hospital. At 4:00 a.m., my ex wasn't home yet. It turns out he was out "clubbing" each and every night. Well, no matter, we made it! Zach is great and so are his siblings! You can do this even if you have to do it alone! Please send me your newsletter! I would really appreciate it so much! Thanks!
Written by Zach's mom, Colleen Blaylock (Texas)
1999
I was so determined to breast feed Zach, as I had his siblings. So, while I gave the NG feedings, I "pumped". I would coax Zach into nursing even while he was being tube fed. I hoped this would be comforting to him. Weight gain was painfully slow. Zach vomited after every feeding. All of these years I have felt so guilty about that. I thought that perhaps I had mismanaged the feedings. I was so relieved to learn that this is a common problem with CDH babies. Months passed, and Zach still had to be NG fed. I was so discouraged. Neither my pediatrician, nor any of the other doctor's I consulted could advise. Our GI doctor was supportive, but couldn't make a prognosis. When Zach started walking at nine months, his attachment to the pump for 12 hours a day became a real challenge.
I was very careful about exposing Zach to illness. For that reason, we kept him away from crowds for the first year. Despite the precautions, Zach was hospitalized a few times that first year. He had pneumonia, a collapsed lung and roto-virus. Zach was put on medication for reflux. He was given nebulizer treatments when necessary. All things considered though, Zach made an amazing recovery. Zach did not have any developmental delays, except for the feedings. Finally, when Zach was 18 months, our GI doctor suggested that she insert a "button", for feeding. I consulted with all the doctors and they were in agreement. However, when I asked the surgeon, he suggested we pull the NG tube and see what happens. To my surprise Zach gradually began to eat and to breast-feed. In fact, I couldn't wean him until he was 2 1/2.I have always wondered why we weren't advised to do this sooner. It relieves me to read of others who have faced the feeding dilemma for an extended time. Now at least I don't feel so guilty! Zach is now almost ten years old. His right lung did not grow to compensate for the hypoplastic left lung, as we had hoped. Never-the-less, Zach is in excellent health! He actually is the fastest runner in his class. He is amazing with a skateboard, surfboard and mountain bike. He is in all accelerated classes in school. He is the most incredible kid! I am so grateful!
The only thing that concerns me now is his heart. This is the real reason for my writing to you. A year ago, Zach experienced what he described as an incredible pressure in his chest. He said it felt like his heart was being squeezed. Of course, I consulted a pediatric cardiologist, (Texas Children's Hospital-Houston). After doing a complete work-up, it was found that the right side of Zach's heart is enlarged and so is the right ventricle. We know that Zach does not have pulmonary hypertension. The doctor says that the difference in Zach's heart was probably the result of CDH and probably of no consequence. We were instructed to have periodic check-ups, including echocardiograms. We were also told of things to watch for. However, Zach need not be restricted in any way. Zach has these episodes periodically. (Incidentally, it was diagnosed as benign chest wall syndrome.) I wonder if others have experienced similar episodes. Also, do you have any information regarding variation in the heart's anatomy caused by CDH? I can't tell you how much I would appreciate knowing!
Finally, I would like to share another aspect of my personal experience. I do this not for sympathy, but only in the hope that it will encourage others to know that they can find the strength to care for there precious little one. From the moment I was discharged from the hospital until the time Zach came home three months later, I spent 11 hours in the ICU nursery each day. I drove myself to and from the visits, never leaving before 10:30p.m. My husband, (now "ex"), never once visited the hospital with me. He told me he was working over-time to pay for all the extra expenses. I had seven young children at home too. My ex never once helped with a feeding or with much of anything else. Once when Zach needed an emergency trip to the hospital. At 4:00 a.m., my ex wasn't home yet. It turns out he was out "clubbing" each and every night. Well, no matter, we made it! Zach is great and so are his siblings! You can do this even if you have to do it alone! Please send me your newsletter! I would really appreciate it so much! Thanks!
Written by Zach's mom, Colleen Blaylock (Texas)
1999