Monday, September 24 - The roller coaster continues (Day 9)

Today we met with the speech pathologist for the second time.  She fed Julia a bottle while observing how she is eating.  She said that Julia is working extra hard to get a small amount of milk, which is exhausting her.  She showed us how Julia sucks once, gulps to swallow several times, and then starts to get stridorous breathing - kind of like gasping for breath.  She said she shouldn't need to swallow several times if she has the correct eating pattern for babies, which is suck once, swallow once, and breath once.  She then ordered what we describe as an X-ray movie.  Essentially she will feed Julia a bottle of milk mixed with barium while an X-ray takes shots of her eating.  This will show the speech pathologist what is happening in her throat as she is eating.  She said she was slightly concerned that Julia could aspirate milk while she is eating (essentially she could confuse swallowing and breathing and get milk in her lungs).  So tomorrow Julia will have another scan (time yet to be determined) to show how she is eating.  Until that time she can breastfeed, but will not be bottle fed.  When Sara couldn't feed her Julia would get her feedings through the NG tube only. So a small step backwards, but hopefully the scan will give us and the doctors more information to help her eat and eventually released from NICU.

Eric also returned to work today, but his work was interrupted by the meeting with the speech pathologist.  He biked from campus to the hospital when we learned when she would be there (after working a whopping total of 30 minutes this morning).  Since he typically feeds Julia her bottles we thought it would be good for him to be there and hear what she had to say.  We then ate lunch together to talk about what we heard and Eric headed back to work while Sara stayed to give Julia her next feeding.

Last night Julia did not do as well with her feedings - the nurse said she averaged maybe 25 ml, which is a bit disappointing since she was eating better at night.  Tonight we won't be able to compare since she will not be bottle fed. Her feedings also increased from 83 ml to 90 ml.  The nurses said that the target feedings are based on age and size of the baby. I took that to mean that they are likely to increase each day, raising the bar slightly higher for her to come home to come home.

Sara spoke with Dr. Stratton (one of the neonatologists at Carle).  He wanted to do some bloodwork on Julia to look at liver, kidney and thyroid functions.  He also did a basic CBC.  He said that sometimes thyroid problems can be associated with babies having a large tongue and he wanted to check it out.  They have been monitoring liver and kidney functions throughout Julia's whole life ;) - If I understand correctly, some of those functions can go along with BWS (Beckwith-Wiedemann Syndrome) and can also go along with abdominal wall defects.  I called and got the results  and for the most part, everything looked good.  Her thyroid level was a bit elevated, but not concerning.  Her calcium and phosphorus levels were a little high, but again nothing concerning.  Her bilirubin level was a bit high at 13.7, but had gone down from yesterday's 15.4 so they weren't concerned.

Julia also got a new spot in the NICU.  She now has a room with a view- meaning she now has a window.  It is nice because it is a little quieter spot and a little more private for when I nurse her and pump.  I put one of her new blankets on her bed today and wrapped her in one of her new receiving blankets.  She looks pretty cute if I do say so myself. :)