Improving?

About a week and a half ago, Bryan and I decided that it was probably time to have Jill placed on a feeding tube. Her feedings have been slowly increasing again, but last week after looking at her weekly intake she was consuming the same amount of milk as she was eight weeks ago. These last few weeks have been such a huge setback for her. Every day that she hardly eats is so stressful. We’ve worried about her not getting adequate nutrition to grow and develop.



We decided to see a doctor at the Idaho Pediatric Gastroenterology clinic at the Boise Children’s Hospital on Friday, Sept. 5th. He thought we should try a few more things before we placed Jill on a feeding tube. His ideas were to increase her acid reflux medicine and try a new formula. I have to admit, I wasn’t overly optimistic. Jill’s medicine has been increased several times, and we have already tried several formulas. We went ahead and tried this new hypoallergenic elemental formula last Saturday. I think it is working a lot better for her. There are no solid proteins; it is all broken down amino acids so it is easier to digest. It is made especially for babies with extreme allergies (or in our case stomach/digestion problems), and it is not sold in stores. Since you can only get the formula through a doctor or pharmacy, I’m really hoping that our insurance company will help pay for part of the cost. We are also hoping that our insurance company will pay for the RSV monthly shots that we need to start getting in October. Each shot is about a $1000. Jill really needs this shot since she is such an at-risk baby for respiratory illnesses. If she was premature, she would automatically qualify, but since she has a unique case the doctor has to put together a letter and documentation to show the necessity for the treatment. Before we left the NICU, we had them do an exit x-ray to show the empty cavity where her left lung should be, but still I’m hoping there are no insurance hassles.


We had Jill dedicated last week at our church. The two pastors that were at the hospital for her birth and surgery also performed the dedication ceremony, which made it extra special. Afterward, we had a luncheon for family and a few friends. I’m looking forward to having a 1st birthday party for Jill. She has been through so much already, but now we have the winter cold season ahead. If she can stay healthy the next six months and continue to eat better, our lives will be so much less stressful. And her birthday party as well as her dedication will be a true time for celebration.


The day-to-day stress coupled with lack of sleep has been overwhelming at times. I keep reminding myself that this is just a season of life. In a few months or at least by next summer, hopefully, things will be much easier. Katelyn got sick this week. I’m doing everything I can to keep Jill from getting sick. The pediatrician this week told me again how important it is that she stays healthy. The slightest thing can be such a huge setback for her. The bottles of hand sanitizer and constant hand washing as well as avoiding crowded places or being around anyone that is sick is such a part of our everyday life right now. I’m guessing it is going to be a lonely winter. Being around a lot of people just seems like an unnecessary risk for Jill’s health.