The roots of this decision stem back from before you were even born. After being observed on ultrasound over a dozen times in utero we still didn't know if you would survive after birth. We'd been told by numerous doctors that you might not make it, but despite the odds you fought... And not only survived, but you thrived!
Because of the concerns with your stomach and bowels you received all of your nutrients by IV until you were 5 days old. At that point you had a feeding tube ( NG) placed and you began receiving milk in tiny amounts (15 ml). From then on (for the first 6 weeks, the entire time you were in the NICU) you received a majority of your meals through the feeding tube. For reasons unknown to us it took you awhile to get to the point where you could take all of your feedings orally. There were many theories; your small size, the holes in your heart, an oral aversion... But in the end we never really figured out why the feeding piece was so tough.
By your 48th day of life the NG tube was out and you were taking all of your feeds by mouth- and you were home. Every single day was a balancing act, but overall the first few months home went fairly smooth. You ate fairly well and contined to grow ok, and on your own curve. By the beginning of fall feeding time had become more and more of a struggle... You taking less and less at a feeding and us trying more and more to get you to eat. Where before you would take atleast some of a bottle from others, now you would only take a bottle from mom and dad, and even that was a struggle. We had been able to lower the calories we added to your milk in the summer, but now with you drinking less your pediatrician told us to start adding the extra calories again. We continued to feed you every 3 hours with smaller volumes because you simply couldn't tolerate big volumes of milk. The questions arose again as to why feeding was becoming such an issue- was it cardiac (your body was working so hard to make up for the holes in your heart)? Was it GERD? Another oral aversion? We didn't know. We had no-one to turn to for answers at the time, and all we knew is that you weren't eating and getting the nutrients or calories you needed. And it scared the shit out of us.
You will never truly understand this until you are a mother, but the most natural and maternal thing there is... Is to feed your baby. The most basic maternal instinct is to nourish your little one so she will thrive. And I now truly feel that one of the most difficult feelings as a mom is knowing that no matter how hard you try, you aren't. I was still trying to breastfeed as well as bottle feed you, and you- being the unpredictable little girl that you are- would never flat out refuse breastfeeding... So we kept trying and I would pump the rest of the time. Still, things kept getting worse. You would cry, arch your back, and most times flat out refuse to drink. We would all come to dread feeding time, praying that you would take some milk, any milk... and keep it down. We would keep track of how much milk you took at each feeding and by the end of the day you weren't even hitting your minimum intake. You would vomit frequently and sometimes lose an entire feed. We were lost. Your pediatrician was out of the country and we didn't know who to turn to. We were frustrated. No matter what we tried, you just wouldn't drink. We we're desperate to get you nutrition. We knew what the next step had to be.
I've said it before and no doubt I'll say it many times again, things happen for a reason. One day at work, (while at a very low point and damn near the end of my rope), a pediatric GI fellow came in as a patient. As soon as I heard this I pulled her aside and told her what was going on. She was very concerned and pulled some strings to get us into the clinic within the week. We tried a dairy free formula to rule out a lactose allergy and a medication to increase appetite, both to no avail. It was time to go back to the feeding tube.
On November 25th, your grandma's birthday, you were admitted for observation at PCMC so that your dad and I could learn the in's and out's of your NG feeding tube. We both had to put the tube in you before we could leave. Our hopes were that as your nutritional status went back to normal, and as you gained weight, that you would begin eating on your own and we could get rid of this damn tube.... Well... you went from eating some by mouth to essentially nothing once that tube was back. When we saw your cardiologist in December he thought that your PDA could be part of the feeding issues, (and since the PDA hadn't closed on it's own at this point is wasn't going to). So on December 19th you had a heart cath in which Dr Grey put a metal coil in the 'hole' to close off the PDA. So now that your heart 'stuff' was taken care of we thought that maybe you'd start eating better orally...
You are in feeding therapy currently, as well as physical therapy, and a patient in the neonatal follow up and follow-up-nutrition (FUN!) program at PCMC. You are an amazing fighter and I have no doubt that you will be eating 100% orally on your own. Just not yet. I think we all have to be patient and not rush you- and you do an amazing job at letting us know where your boundaries are...we just have to follow them. NG tubes are meant for short term use and are known to increase oral aversion (you have a tube stuck to your face that goes through your nose and down your throat 24/7, then when it comes out we have to put it back in) and it increases reflux...something that you have pretty bad. With those two things combined, and the fact that without a tube you just aren't making it nutritionally, we have come to the conclusion (with much research, advice, and soul searching) that the g-tube is the way we have to go in order to get you to be a true lover of food one day.
I have done pretty extensive research on tube weaning and intensive hunger based tube weaning programs (none of which are in Utah). We are going into this surgery with a plan to get you tube free as soon as possible. But we don't really see any other way around it. So...this is not a decision we have come to quickly or lightly. Know that it has been an extremely hard decision for us and we feel that we have tried pretty much every other option that we (and others) can think of. We also know that you are a fighter and that everything that life has thrown at you, you've beat...and you'll beat this too. We'll beat it together.
On November 25th, your grandma's birthday, you were admitted for observation at PCMC so that your dad and I could learn the in's and out's of your NG feeding tube. We both had to put the tube in you before we could leave. Our hopes were that as your nutritional status went back to normal, and as you gained weight, that you would begin eating on your own and we could get rid of this damn tube.... Well... you went from eating some by mouth to essentially nothing once that tube was back. When we saw your cardiologist in December he thought that your PDA could be part of the feeding issues, (and since the PDA hadn't closed on it's own at this point is wasn't going to). So on December 19th you had a heart cath in which Dr Grey put a metal coil in the 'hole' to close off the PDA. So now that your heart 'stuff' was taken care of we thought that maybe you'd start eating better orally...
You are in feeding therapy currently, as well as physical therapy, and a patient in the neonatal follow up and follow-up-nutrition (FUN!) program at PCMC. You are an amazing fighter and I have no doubt that you will be eating 100% orally on your own. Just not yet. I think we all have to be patient and not rush you- and you do an amazing job at letting us know where your boundaries are...we just have to follow them. NG tubes are meant for short term use and are known to increase oral aversion (you have a tube stuck to your face that goes through your nose and down your throat 24/7, then when it comes out we have to put it back in) and it increases reflux...something that you have pretty bad. With those two things combined, and the fact that without a tube you just aren't making it nutritionally, we have come to the conclusion (with much research, advice, and soul searching) that the g-tube is the way we have to go in order to get you to be a true lover of food one day.
I have done pretty extensive research on tube weaning and intensive hunger based tube weaning programs (none of which are in Utah). We are going into this surgery with a plan to get you tube free as soon as possible. But we don't really see any other way around it. So...this is not a decision we have come to quickly or lightly. Know that it has been an extremely hard decision for us and we feel that we have tried pretty much every other option that we (and others) can think of. We also know that you are a fighter and that everything that life has thrown at you, you've beat...and you'll beat this too. We'll beat it together.
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