Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Saturday, October 1, 2011

Let's keep the winning streak going!

Today we decided to have a "date" with our older four girls and take them to a playground and then lunch.  We had fun - it was a gorgeous, breezy, Fall day and the playground was the perfect place to spend some time.  We enjoyed lunch with the girls too and then headed home to leave them with Brian's mom so we could still make it down to Children's.

One of Meagan's biggest hurdles the last few days has been her feeding.  She has been having a lot of residual being pulled from her feeds, almost to the point where she wasn't really digesting any of the milk.  They have her on a continuous feed through her tube because of this -only 20ccs over every hour - but even today they were pulling 26+ccs from her feeds again.  The NICU doctor told the Nurse to turn down her volume to 15ccs and see how she did with less volume.  Well, when they pulled the residuals, they were up to 38ccs!!

Luckily, the NICU doctor seems pretty pro-active.  She said obviously with the higher residual pulls, Meagan wasn't improving on her own with time.   She prescribed Reglan and told them to give it to her before each syringe of milk is put into the tube.  They did a residual pull a few hours into the new plan - only 14ccs!! So they decided to continue this regimen, and tonight when they pulled residuals, it was all the way down to 4ccs!! FINALLY she was digesting more milk than before - so this is a great sign.  The doctor said if she keeps having great residual pulls with the Reglan, then the next goal tomorrow is to up the volume of milk she takes in - and see if she can still keep those residual numbers low.  So that's where we are now with feedings - a lot of progress today and hopefully the Reglan continues to help Meagan with her digestion.

Her oxygen levels were also turned down again today.  The RT (respiratory therapist) that worked with Meagan tonight told us that he'd even be ok with turning it down more if she's doing well in the morning.... so we are doing very well with the O2 levels and weaning her off of them.

The other issue is now her shunt.  The Neurosurgeon came by today to look at her shunt area.  Yesterday, he'd been concerned because of fluid gathering near the shunt site.  He said that this is ok to a point in normal fluid/shunt adjustments... the fluid will hopefully just be also filtered out by the shunt at some point.  His concern was because her fluid pocket was much larger today.  The good news is that her head circumference continues to go down.  Today it was down to 45cm.  The Neuro said because of the head circumference shrinking, he just wants to watch the shunt site for now -- it seems to be functioning ok, so the fluid pocket may just be how she is handling the shift of fluid in her head.  He said if it's still getting bigger in the next day or two, he may have a head scan done so he can see more detail of how things are functioning.  If not, then we just watch it and it will probably be ok. He said he's never had a shunted patient have a pocket as puffy as hers is.  Honestly, I"m not that upset or shocked.  To be upset at a device that already has a 50% failure rate as it is would be a waste of my time. It's just a wait and see situation - and we are pretty used to that by now after going through the Hydro pregnancy! So we'll see what happens.. I am confident it'll all work out.

We stayed late tonight since we came in at a later hour.  Meagan had a lot of awake time suddenly.  She was looking around, looking at me, and really taking everything in.  She fussed when I'd shift my arm, or when beeps would go off from her little baby neighbor in the pod next to hers..etc.  It was the most awake and alert I've seen her.  I also noticed when she had her eyes open tonight that for the first time ever, she had an eyelid.  Ok, of course she always had eyelids - BUT - the pressure in her head was so strong that it made her eyes poofy and swollen - and so the eyelids and skin all around her eyes was very swollen.  Tonight, her right eye, when closed, actually had an eyelid! It was nice and relaxed and so cute... seems like a little thing - but - it was great to see because it was a sign to me that her pressure was being relieved.

Overall, Meagan had a great day... If we can just keep her on a good track of digesting her food, and be able to increase how much she eats, then I think she'll be on a good upward swing.  Of course, the Neuro (and Brian and myself) will be watching that shunt site - but - that's pretty much out of our control... whether it fixes itself, or whether she needs some sort of help to fix it - so we may as well just think positively and count on it resolving itself. 

When we got home, Brian's mom gave us a note Reilly had written to us -- it was the sweetest thing ever.  I know she feels a lot of the stress - not just because she is the oldest, but, also because she is a perfectionist and probably feels "responsible" in many ways for what is going on at home while we are away. (ie: keeping her sisters in line, playing nicely, helping Grandma, taking care of her own hygeine, etc.. that she's able to do by herself..etc.).  Her letter was the cutest thing ever - she said she missed us, and wished she could talk to us.  Her biggest questions, though, were about Meagan coming home. Even though she "gets" that Meagan is "sick" (word we used because she won't understand all the other terminology), she still doesn't understand why Meagan isn't home.. as the days linger on, she becomes more impatient.  We had also planned to take her to see Meagan, but, she is now sick so we can't take her.  So I know the fact she can't even see her weighs heavily on her worries. 

Let's keep it goin Meagan! You have 4 big sisters waiting for you at home...  !!!!!!

Sound asleep on Mommy

Loving the hat from Aunt Jennie

3 of our 4 older girls made Meagan some artwork for her NICU pod.

Meagan really loved sucking on her Paci tonight all of a sudden. I love it!

She had several minutes of awake time tonight! We had so much fun talking to her and looking at her beautiful eyes!


  1. She is precious...those pictures make me melt :)

    Yay Meagan, keep digesting!!

  2. Go Meagan! I am one of your Cheerleaders! She is looking like she is ready to go home to visit with her Sisters:) Have a blessed day my friend, HUGS!

  3. She is changing with every update! Beautiful girl!