Super Baby Faith

So far October has not been the most encouraging month. We have had several follow-up appointments with specialists and further testing to dig deeper into Faith’s feeding issues.

Faith had her follow-up appointment with her endocrinologist and not surprisingly she has really not gained any weight in six months. We have a phenomenal dietitian that works with us very closely and weighs Faith every 2 weeks so we knew that her weight was not changing. It is also pretty obvious when your 2 year old can wear the same clothes that she wore when she turned one. Faith even lost some weight but luckily through some changes we were able to get her weight back up. My concern is that we have maxed out the amount of calories Faith can take in per ounce at this point by tube. We are adding Duocal to her formula. We did try to cut back a bit on her tube feeding in an attempt to stimulate her hunger and try to get her to take in more calories by mouth. However, Faith just did not respond the way we hoped to with her oral feedings despite trying to feed her extremely high calorie blended foods to get the most bang for every bite we could get her to eat. We tried increasing her rate per hour of formula going in and that resulted in major throwing up. It is very evident that Faith can not handle even very subtle increases in the rate of the formula entering her stomach. We have had to increase the length of continuous feedings since we cannot increase the rate due to Faith’s intolerance. I feel like we are taking many steps back again and with Faith’s weight being a high concern again we may have to put her back on tube feeding 20-22 hours a day. I am hopeful right now that we have things under control and she will gain weight at her next weigh in but her endocrinologist is monitoring things very closely and mentioned that we will have to consider other options if she has not gained adequate weight at her next visit. The good news is that Faith is growing in length since she has been on the growth hormone. Now, our goal is to get her to gain weight proportionately with her increases in length.

Since oral feeding has been such a struggle, we started vital stimulation about a month ago. I mentioned this in my last post. We are continuing to do this therapy at this time. The speech therapist that works with Faith along with Faith’s pediatrician recommended doing another modified barium swallow test to determine if Faith was still aspirating and to get a better picture of what is really going on when Faith is trying to eat. It had been almost a year since her last swallow study so we agreed to do it. The speech therapist also thought doing a Fiberoptic Endoscopic Evaluation of Swallowing (FEES ) study may be beneficial to gather more information. This test is done with an ENT doctor so we thought it might not just be valuable for swallowing information but also to get another opinion on many of our ENT concerns. We are always trying to find out anything that could help us piece things together to help Faith.

The FEES study is not pleasant for a child to go through so I am a bit disappointed that we didn’t get more information from it. Many of the questions that I asked were not addressed as I was told they would be. Without going into all the details and to prevent myself from getting frustrated all over again let’s just say that much more aggressive treatment options were prematurely suggested (without even really knowing Faith or all of her medical history) that I do not feel are appropriate nor medically necessary for Faith at this time. Overall, the FEES study did not give us any remarkable information that I feel will help us at this time.

The swallow study was informative but definitely not what we wanted to hear. Faith did aspirate on the swallow study. She is also struggling with nasal regurgitation which is most likely causing her to get fussy and uncomfortable during feeding. Along with a sensory component, Faith’s muscles are just too weak to push food from the front of her mouth to the back. We were told that Faith will never be an oral feeder. No parent wants to be told that their child will never be able to eat by mouth. However, more concerning to me is Faith’s difficulty with liquid tube feedings. As Faith gets older, her caloric needs will be greater which will require her to get even more liquids through the tube. Even if Faith can only take a little bit by mouth it is less liquid that she has to take in through the tube. I am not giving up on Faith. I know that the odds are not in her favor. They aren’t in any areas of her development but we aren’t giving up on everything else either. We realize that we need to be cautious because aspiration could cause issues with her lungs but that doesn’t mean that we have to just stop all together. No doctor has told us we need to stop at this time due to health concerns. If we reach that point, then we will revisit our decision. We will continue to offer her oral foods and work with her patiently to keep those eating muscles in use. Through vital stimulation, the muscles can get stronger which could help Faith greatly. Since Faith has been on Robinul (a medicine that reduces oral secretions) she has not had pneumonia. We really felt like Faith was getting pneumonia because she was aspirating her own secretions. She was gagging and choking so much it only makes sense that her airway was probably open and saliva was getting into her lungs. The little bit that Faith is taking by mouth does not seem to be putting her at risk for health problems. We have had to stop oral feeds with Faith before and we know how much she regressed and how difficult it was to get her to even open her mouth when we were allowed to resume oral feedings.

We will be talking with Faith’s doctors more about the swallow study to determine next steps. I feel like I have got into a good routine with Faith on many things and that she is doing better with feeding. Some days I can’t get her to take anything, but that’s ok because that’s her way of telling me I don’t have it in me right now. Other days, she does great and eats almost a whole container of applesauce. Faith is a trooper and is doing her best despite the many challenges she is faced with. Some times she has more strength and endurance than other times. Faith can eat, she just isn’t consistent and has a lot going against her physically. Only God knows what the future holds for Faith and I am continuing to put my trust in Him. So many of Faith’s appointments lately have been mentally draining and discouraging but at the end of the day what I realize is that what Faith needs most is love. No matter what else is going on, how poor the outlook is, no matter what any therapist or doctor tells us, I need to just give her all the love in the world that I have. Some days I get so caught up in being all of her therapists, her nurse, and her personal assistant that I don’t get to enjoy just being her mother. No matter what Faith can or cannot do, she is my girl and I love her more and more everyday! I couldn’t be more proud of my Super Baby Faith and always want to enjoy every single moment with her!

Keeping the faith,

Bridget