Exhausting the Options

Faith’s last two weigh-ins have been rather discouraging. She is just not gaining weight despite everything we are trying. Today, she actually lost weight. Not a horrible loss (about 100 grams), but still a loss. This just makes no sense to me or Faith’s dietitian for that matter. Over the last three weeks, we have increased the amount of formula she is getting and still no weight gain. This makes me worried because at this point we just don’t have an explanation. Faith hasn’t gained any weight in the last 7 months and we have even had a few weigh-ins in which she lost weight. Since we know exactly what she is taking in nutrition wise, the only factor that could explain things is her energy expenditure. It just doesn’t seem to me like anything has changed in that area though. Faith’s therapies are the same, her physical development is the same, etc. I really can’t justify that she could be burning more calories than before since things really haven’t changed. We are increasing her formula volume again but I just don’t know how much more we can get in this child. Even just small increases seem to be difficult for her stomach to handle and her reflux just gets worse. We have been doing smaller bolus feeds with her during the day to get extra calories in addition to her overnight continuous feedings. I just feel like we are going to end up with Faith back on continuous feedings 22 hours a day. I don’t want this to happen for many reasons, but right now most of those reasons don’t even matter because she has got to get adequate nutrition for growth and development and that has to be our focus.

It seems right now that a big and difficult decision we have made is definitely for the best. Along with recommendations from many of Faith’s doctors and therapists, we have decided to admit Faith to a pediatric specialty hospital for observation and intensive therapy. This has been a possibility for quite some time but there were obstacles and we were trying other things outpatient first. We anticipate that Faith will be admitted for a few weeks. This will allow the team of doctors and therapists to get the big picture with Faith. They can observe her 24/7 and hopefully figure some things out. Nutrition and weight concerns, sleep, development, eating, and much more can all be closely monitored, observed, and worked on. Faith will get her regular therapies, but more frequently and intensively. Faith will also be able to get more frequent vital stimulation (swallowing therapy) which will be a better indication of the effectiveness of this type of treatment for Faith vs. the one time a week we have been doing it.

We have always felt that we have to exhaust all the options available to help Faith. Some things we can’t change, but there are areas in which we feel we can improve Faith’s quality of life and maximize her potential. She deserves to be comfortable, healthy, and happy. Faith does seem to be much happier and healthier the last few months. We are seeing more smiles which are just amazing and I can actually say that Faith hasn’t been sick since July. We hope that we can make the same progress in other areas. In terms of the nutrition concerns, we hope that by addressing things now we can prevent Faith from more drastic options.  We are hoping that a nurturing and therapeutic hospital environment will be a much better place to work out some of these issues vs. a forced admission to a regular children’s hospital.

We ask that you please pray for us these next few weeks. Please pray that this admission will help us to make progress and give us direction on how to prioritize Faith’s needs, treatment, and therapies.

Keeping the faith,

Bridget