Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Monday, October 3, 2011

New worries, and new accomplishments

Meagan seems to be holding steady on her feedings finally.  The NICU doctor told us that anytime a person has trauma to the stomach area, there is always a chance the digestive system can be really messed up. She said especially in younger patients, and ones dealing with other issues. 

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.

A piece of good news was that it looks like Meagan will come off all oxygen tomorrow!  She was taken off the high flow oxygen today and put on a low flow of only 2.  The nurse said tomorrow she'll surely come off because she's doing great and not on a high percentage anyway. Hopefully that happens, and we'll be down 2 tubes to deal with! :)

Enjoying her new hat from Aunt Jennie

We had two new concerns arise today. 
First, we have noticed over the last several days that Meagan has shaking episodes.  Nothing crazy, but, still enough where we notice. It's almost like a tremor through her back or head and sometimes her eyes roll and her mouth does funny things.  They tend to come in waves ... about 4 or 5 repetitive motions at a time and then it goes away until some time later.  I realize newborns can have shaky moments, or "jerks" as their muscles are getting used to being outside the womb and strengthening - but in 4 very different babies, I"ve never seen motions like this.  Just because of my uneasiness, and knowing Meagan is dealing with the Hydro, I decided to call the NICU doctor and ask if we could run an EEG on Meagan.  It's completely non-invasive.. and she's laying in the NICU anyway, so I'd rather do it now.. than take her home still wondering and have to bring her back and disrupt her schedule again.
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. 

Meagan's shunt site.. it's become quite pink/red over the last two days. We're watching it closely along with her doctors and Neuro.

Overall, she's doing well - but these new worries pop up and it seems to "set us back" mentally.  But we know from talking to other Hydro families, this is just Hydrocephalus.  This is just how it is to be a Hydro parent because one day everything can be fine, and the next you can be staring a huge problem, setback, or concern right in the face.  I'm sure this is the first of many worries we will experience with Meagan. But, we also know she has great people around her trying to help and working to make her life the best, healthiest and fullest possible - so we are very grateful for that!

We'll keep everyone posted once we know more about our new concerns. But for now, we're just trying to stay on top of them and be pro-active so we stop problems before they start.

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!

Lookin at Mama before we left tonight :(



  1. She is just so precious. Keep.fighting, Meagan!! Happy for her improvements, praying for fewer setbacks every day.

  2. Meagan, you are precious to so many... including me! Keep fighting little one and before you know it you will be home with the family! HUGS AND PRAYERS!