Brown and Pink Polka Dots : Feeding Tube Awareness Week 2018 Day 2

Nutrition
There are long-term consequences to malnutrition and being undernourished. For some people, there wouldn’t be life without tube feeding, but for others they would continually struggle with malnutrition. Tube feeding makes it possible for people who aren’t able to eat enough on their own to get the nutrition they need to live.

Jillian experienced the greatest amount of being under nourished as a baby because her medical needs we unknown. It started shortly after birth when she tried to eat for the first time and struggled and it continued with many lactation consultant visits as they tried to help her learn how to eat without it taking so much work but at 10 days old she was already showing a large amount of weight loss. We switched to nursing her and bottle feeding to try to give her calories without as much work. She started gaining but only a tiny amount. At 2 months old she was hospitalized for the first time because of her vomiting and after that hospital stay at our follow up with a GI they diagnosed her with Failure to Thrive and started adding formula to breast milk to give her more calories. At three months old she was hospitalized with a respiratory illness and while in the hospital struggled to maintain her weight and had an NG tube placed. A month later we followed up with GI and it was decided that based off of how much she was vomiting still that she would be switched to a NJ tube which passes the stomach and feeds into the intestines. At 7mo old she had a GJ tube surgically placed.

Lydia showed some signs of struggling to eat shortly after birth however it really ramped up her third day of life when she started choking on reflux. Jillian would take a bunch in, wear her self out eating and then vomit most of it... Lydia would not take much, would reflux the small amount she took and would choke and make horrible sounding noises, and then would be too exhausted to wake back up for her next feed. They both had horrible reflux caused by motility issues, they both just handled it differently as newborns. We did weekly weight checks on Lydia because she was struggling to gain and at three weeks old the decision was made to admit her to the hospital. During the 8 day stay we tried an NG tube and ended up leaving with a NJ tube for the same reasons as Jillian. At three months old Lydia had surgery to place her GJ tube.

Without their tubes the girls would not be able to get the nutrition in that they need. They would vomit most of what they eat and a lot of that vomit would end up in their lungs causing even more lung issues.

The girls are also on a special kind of formula called Elecare Jr. It is made up of amino acids. Both girls showed clinical signs of having issues with milk protein when they were babies. Amino acid formula is also easier for the intestines to digest and since they are fed into the intestines, have intestinal motility issues, and absorbing food takes a lot of energy for their bodies, so it was decided that amino acid based formula would be the best choice for the girls.

We wore our Childrn's clothes yesterday

Lydia's first tube

Baby Jilli with vomit

Jilli's first tube... this was at her hospital stay when she was 2 months old... she was not fed into it but it was used to get the massive amount of air out of her stomach causing her to be distended

Jilli's first tube she was fed into

We had a great day yesterday. I worked on cleaning and talked with NIH. NIH got to the part in our records where it started talking about the testing that genetics here has been working on since July and they were confused. They called to ask what I knew about it and I said nothing really... I know they started investigating a gene they found back in July however we know nothing about the gene or what their study is showing. NIH has requested that genetics gives them a full update. We also found out that we should be getting our appointment list either today or tomorrow for while we are at NIH which I know will help me to feel better once I have that. We are still waiting on a few travel questions to be answered so our medical coordinator is talking to our travel coordinator.

Last night we did one of my favorite things, we had Jaime, Jason and the boys over. We celebrated Oliver's birthday and Jilli made him cupcakes. The kids played and the adults hung out. It was a great night! I am so thankful for nights like that!

Another feeding tube related event... Jilli has been working on giving herself meds (we draw them up for her and she pushes the meds into her tube). She has been working really hard at learning how to do this and remembering to clamp before taking a syringe off and unclamping before pushing the med in. Last night she decided on a new skill she wanted to learn... she figured out how to attached her extension herself! She is getting to be so big! I am so proud of all of her hard work and determination in her self care. Fine motor things are hard for her and this isn't easy but she is working hard.