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)
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)
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