She said Meagan's delays are probably due to the incision in her tummy. (Where they have to pull her catheter through for her shunt). She said her body just reacted to the surgery and she sees it a LOT in Hydro patients. The doctor said since she's tolerating her feeds well through the tube, she doesn't want to change anything right now as far as trying bottles just yet until she gets her volume up. She turned up Meagan's volume by 5ccs an hour and so far today, she was tolerating that well. So now she's on 20ccs per hour on continuous feed. The doctor said as frustrating as it is, there is no need to rush her because even more frustrating would be to have a set back and start all over again. I really appreciate her patience with Meagan and am glad she's caring for her.
The NICU doctor was extremely receptive to us. She explained she has a daughter with a seizure disorder and completely understands the need for peace of mind. She also said that because Meagan's Hydro, there is an increased risk of seizures down the road - so even if everything checks out fine, it will be a great idea to have a baseline EEG so we have something to compare future tests to. I really appreciated her openness, and her pro-active nature. She said she'd call Neuro and then go ahead and order an EEG for Meagan while she was in the NICU. So hopefully it shows us some answers either way - we just want to know if the tremors are seizure related, or, if they are just Meagan's "norm." Just knowing the information will make us so much more at ease when we do take her home.
The second area of concern is Meagan's shunt site. The incision looks good - her head circumference is going down pretty well. It doesn't seem to be draining too fast (which we don't want either)... it will go down a little, plateau for a few days, and then go down again and repeat the pattern. However, she has a large pocket of fluid gathering around her shunt site. We asked the Neuro about this last week, and he said that is completely normal in some cases because of the amount of fluid trying to leave Meagan's head. He also said because of the way she is laying, it may gather there for a while before draining. We were fine with that, but, in the last 2 days, the site has also suddenly decided to get red. At first it was just pink and we thought maybe she had been laid on that side by accident ..etc.. but then yesterday and today it looks much redder. We got the on-call Neuro down tonight to look at it because we know the risk of infection is very high in the first few weeks especially - he seemed to think it could be residual bruising from the surgery.. but.. because of the poofiness and the warmth, he suggested we keep a close eye on it. Meagan's regular Neuro, whom we love and really trust, will be doing rounds early in the morning, so he will look at it and let us know what he thinks. If he has the same conclusion, I'm fine with that and we will watch it - but, if he says something different we'll definitely take it to heart because we trust his opinion.
We love spending everyday with her. She is starting to have more awake times. She used to sleep all the time or possibly open one eye for 2 seconds. As of yesterday, she's starting to have 3-5 minute time periods later in the day where she wakes up for a little bit and actually "listens" to us while we talk to her. That is very good to see! She has gorgeous eyes and the tiniest, daintiest little face. I could just sit with her 24/7 and stare at her beauty!
I thank God for her everyday! I cannot imagine our lives without her - and she isn't even home yet!