Some background info!
Some background info on Chloe! She was born on April 29 2018, 5 lbs 15 oz, 19 inches. The night she was born she was transferred to St.Josephs Childrens Hospital where she spent the first few months of her life there. She was diagnosed with Tetrology of Fallot with Pulmonary Artresia shortly after birth. It is a heart condition which is essentially 4 heart conditions in 1. When chloe was just 3 days old she had her first open heart surgery to add a BT shunt to her hear to increase blood flow into her lungs. The BT shunt was not enough because she could not get off life support for about a week. When nursed tried to extubate Chloe from the Ecmo, her oxygen was very very low for over 50 minutes! Its a miracle that she is still with us and not severely affected. Shortly after that, Chloe had another operation on her heart to add a stent to that BT shunt. Chloe still wasn't ready to come home...the Doctors found a hiatal hernia and her severe reflux was causing feeding problems. Again, chloe had to have another surgery. The surgery was called a NissIn Funduplication and the surgeon also took care of the hernia. Because of all of that along with a heart condition, she needed a feeding tube. It was simply too dangerous for her to keep refluxing and spitting up because she kept aspirating. Her every first feeding tube was a rigged AMT G-Jet. That meant the feeding tube was bypassing her stomach and feeding her into her intestines. Finally after over a month of operations, surgeries, tests, poking and prodding and living in the hospital, chloe came home!!
We thought all was well but sadly chloe got admitted back to the hospital only 3 days later. The reason being she kept having "Tet spells". A tet spell is when a child with TOF (Tetrology of Fallot) turns blue because of lack of oxygen. Common causes of tet spells are crying, feeding, getting worked up, being too active. For chloe, she just wouldn't stop crying. We literally couldn't set her down or even move her in any way without her having a tet spell. The problem was with her first feeding tube. It was causing her extreme discomfort because the surgeon didn't give us a way to vent her. Venting with a feeding tube is how you get air bubbles out of the body. Chloe had a nissin funduplication surgery so therefore she can't burp! she was just filled with air! Chloe had another surgery to add another tube to allow for venting. It was an immediate help!
A month after this last surgery she came home again. while we were happy to have our baby home with us where she belongs, life was far from normal. some challenges we were facing was: Chloe kept pulling out her feeding tube which caused multiple hospitalizations (about 10!). The J tube has to be placed surgically but because hers was rigged it just slid right out. She wasn't big enough for the normal J tube. Also a huge challenge we faced was keeping Chloe happy. You see, each time she had a surgery she was given Morphine for pain. Basically, she was on morphine for almost 3 months of her life. She came home on a weening schedule with methadone. Our little 3 month old was withdrawing from some hard drugs. It was so painful to watch...the constant twitching, terrible sleeping difficulties, never happy, only wanted to be held, hated everything. Remember she's not allowed to cry, this was the most difficult part for us. Every single day felt like forever. This is not how we pictured having a baby would be. This was so hard, too hard.
Some background info on Chloe! She was born on April 29 2018, 5 lbs 15 oz, 19 inches. The night she was born she was transferred to St.Josephs Childrens Hospital where she spent the first few months of her life there. She was diagnosed with Tetrology of Fallot with Pulmonary Artresia shortly after birth. It is a heart condition which is essentially 4 heart conditions in 1. When chloe was just 3 days old she had her first open heart surgery to add a BT shunt to her hear to increase blood flow into her lungs. The BT shunt was not enough because she could not get off life support for about a week. When nursed tried to extubate Chloe from the Ecmo, her oxygen was very very low for over 50 minutes! Its a miracle that she is still with us and not severely affected. Shortly after that, Chloe had another operation on her heart to add a stent to that BT shunt. Chloe still wasn't ready to come home...the Doctors found a hiatal hernia and her severe reflux was causing feeding problems. Again, chloe had to have another surgery. The surgery was called a NissIn Funduplication and the surgeon also took care of the hernia. Because of all of that along with a heart condition, she needed a feeding tube. It was simply too dangerous for her to keep refluxing and spitting up because she kept aspirating. Her every first feeding tube was a rigged AMT G-Jet. That meant the feeding tube was bypassing her stomach and feeding her into her intestines. Finally after over a month of operations, surgeries, tests, poking and prodding and living in the hospital, chloe came home!!
We thought all was well but sadly chloe got admitted back to the hospital only 3 days later. The reason being she kept having "Tet spells". A tet spell is when a child with TOF (Tetrology of Fallot) turns blue because of lack of oxygen. Common causes of tet spells are crying, feeding, getting worked up, being too active. For chloe, she just wouldn't stop crying. We literally couldn't set her down or even move her in any way without her having a tet spell. The problem was with her first feeding tube. It was causing her extreme discomfort because the surgeon didn't give us a way to vent her. Venting with a feeding tube is how you get air bubbles out of the body. Chloe had a nissin funduplication surgery so therefore she can't burp! she was just filled with air! Chloe had another surgery to add another tube to allow for venting. It was an immediate help!
A month after this last surgery she came home again. while we were happy to have our baby home with us where she belongs, life was far from normal. some challenges we were facing was: Chloe kept pulling out her feeding tube which caused multiple hospitalizations (about 10!). The J tube has to be placed surgically but because hers was rigged it just slid right out. She wasn't big enough for the normal J tube. Also a huge challenge we faced was keeping Chloe happy. You see, each time she had a surgery she was given Morphine for pain. Basically, she was on morphine for almost 3 months of her life. She came home on a weening schedule with methadone. Our little 3 month old was withdrawing from some hard drugs. It was so painful to watch...the constant twitching, terrible sleeping difficulties, never happy, only wanted to be held, hated everything. Remember she's not allowed to cry, this was the most difficult part for us. Every single day felt like forever. This is not how we pictured having a baby would be. This was so hard, too hard.
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| The first day we brought Chloe home |
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| turning 1 month old at the hospital |
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| J tube portion is the yellow tube on the left. Venting portion is on the right. we were taught to vent her continuously into a diaper |
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