Medical Update

Lots going on right now with Willa. I've been hesitant to post any details because things are happening but we are not really seeing results. Let me try and explain but still keep this short -

8/8 - Was her NICU follow up visit with the Special Infant Care Unit. At this visit Willa weighed 12lb 11oz.Willa was put on the reflux medicine Prevacid (taken twice a day). I also had to email the Special Infant Care Unit each Wednesday with a weigh check.

8/15 - Reported an amazing weight gain with Willa being 13lb 3oz.

8/21 - Reported a smaller weight gain with Willa being 13lb 6oz.

8/23 - Let them know that we were not seeing a big change in her eating habits since starting the reflux med. We were told to change the fortifier from Gerber Gentlease to Gerber Nutramigen. I requested a barium study be completed to better understand her reflux.  We were referred to the Pediatric GI doctors.

8/28 - Reported that Willa lost weight and was at 13lb even. The weight loss caused concern.

9/4 - Labor Day weekend was awful due to Willa's fever. However, she did gain weight  and was back to 13lb 6oz. I let them know we did not feel the Prevacid or Nutramigen was helping with the reflux and eating issues. We were "pushed" to bring Willa to see the Peds GI doctors by 3pm that day.

Saw the nurse practitioner for the GI doctors. The immediate change was that Willa's reflux medicine was switched to Nexium (taken twice a day). I am to call the GI docs once a week in addition to emailing the Special Infant Care Unit about her weight.

9/5 - I get a phone call from the GI doctors that they want Willa to come for some blood work. They are looking for reasons she is not growing. Some of things to be examined - electrolytes, complete blood count, thyroid, and celiac markers.

9/11 - Reported that Willa's weight went unchanged this week and remained at 13lb 6oz.

Another last minute request to bring Willa to the hospital. This time it was to see speech doctors for feeding assistance. Willa's feeding via bottle, puffs, and baby cereal was observed. We are potentially going to add feeding therapy sessions which will occur at daycare.

Next came the blood draw. This was awful for Willa and me. They took nine vials. N.I.N.E. I had to hold down my screaming baby. The only positive was that ladies only had to stick her once.

Met again with the nurse practitioner from Peds GI. Also saw the doctor who let us know that everyone is very concerned about Willa's lack of weight gain. There are a variety of things that they will try and the "experimenting" will occur rapidly.  I was thanked several times for being able to drop everything at work to bring Willa to UNC.

Willa was started on a medicine which will hopefully stimulate her appetite - Cyprohepadine. If we don't see results in 3-4 days than her diet will take a major change. All dairy products will be cut out and Willa will start Neocate (nondairy formula). No more breast milk or whole milk yogurt. Thankfully we were given two sample cans of Neocate as it is quite $$$$$



I tried to keep the medical recap as short as possible. You all deserve a Halloween Oreo if you made it through that entire post. Next up for Willa is an upper GI series on Tuesday, October 17th. Also, we are waiting on the results of the blood work.