Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Saturday, October 8, 2011

14 days down

Happy 2 week Birthday Meagan!

The last few days have been quite busy.  Meagan was extremely fussy yesterday morning - she continued to be this way the first half of the day.  Now, she has cried at a diaper change, or other things that "disturb" her.. but even when she is having her therapy sessions, she would stay extremely calm and basically look around at everything going on.  But not yesterday.  Even when fed, cleaned, and not bothered, she was screaming! Of course, being a shunted baby, our first concern was something wrong with her shunt.  The Neuro came by to check it and thought it looked ok.  The nurse finally gave Meagan some Tylenol because she said it's all she could think of in case Meagan was having some pain.  Not even Brian holding her or me holding her would calm her down.  Then she had a small temp spike.  She has been 99 degrees since she came into the hospital.. but her temp went up to 99.8.  This, along with all the strange behavior prompted her NICU doctor to call for some blood and urine samples just to double check. 

Meagan finally calmed down around mid-day.  The speech therapist came back to work on her feedings with her - Meagan wanted NOTHING to do with it. She finally did take a few little sucks but nothing significant. She screamed and screamed.. so finally the therapist handed her to me.  I put her to the breast to try to calm her.  She amazingly did latch on .. she didn't drink though. She just laid there and calmed down and eventually fell asleep.  Although it was frustrating she didn't feed on her own, it was very comforting to know she would at least latch on to me and calmed herself finally. 

She also had her hearing test.  She passed in her left ear.. she failed in her right.  The audiologist re-did the test 3 times and got the same result each time.  She said while the type of hearing test she uses can be a good indicator for later and what to watch for, (the audiologist told me the hearing test she administered is like a mini EEG)  it can also mean that there is just too much fluid in that particular ear and she could test fine later.  Either way, we are ok... we figured we would get little "surprises" like this with her Hydrocephalus. So, another 'wait and see' situation -- we are supposed to bring her back before 3 months old so they can re-test the hearing and give us a more diagnositc answer. 

Not feelin too good yesterday!

Snuggling with Mama helped a little

Intense look 

Hearing test time - bringing back the 80s.

Today when we went back to see Meagan, she was much more calm... much more "herself."  On the way to the hospital, we got a call from her Neurosurgeon.  He had heard she had a rise in temperature and was very irritable the day before, so he said he thought he would stop over since he wouldn't be here this weekend.  Another reason that so far, we really love her NSG.  He didn't "have" to come over - he had already released us to NICU care ... but it was nice of him to double check her shunt.  As of this morning, it was still working great. We also got her labwork back - almost all of it came back normal except one of the cultures which indicated infection.  Because her other labs were normal, the doctor wanted to re-draw blood and run it again to make sure the one culture that came up positive wasn't just a contaminated sample. The NSG said if all else shows clear, and her shunt being ok, the only thing he could think of was that she had a bad headache or some sort of pain and if it happens again to give her a little tylenol.  I was very happy he'd stopped by to double check Meagan's shunt site.

Meagan toes! They are so long!

We tried feeding again today too -- when I would hold her, if she ever seemed hungry or rooted around -- I would put her up to nurse. She did the same thing as yesterday - latch on and lay there.  We did try the bottle again with her today.  Meagan did SO much better! She didn't drink much - only 5ccs .. but at least she actually drank a measureable amount.  When the therapist told me to tilt the bottle back to give Meagan a little break in her sucking (because she's really never swallowed to eat before), Meagan took a sip - and of course it was air. Enter: major meltdown.  She screamed and cried.. and was done. She did not want to eat anymore.. so, tomorrow when we try, I won't tilt the bottle down as much.  She was doing just fine on her own -- so we'll see where this goes.  I'm not holding my breath - I realize the feeding process is going to be long and tedius - BUT - I do hope that she catches on quickly so she can start taking down more milk.

We're still waiting on her viral urine test from the other day -- and now are waiting on new labs about this possible infection.  She was more alert today - she loves to give off little smirks and smiles.  The doctor also said since she's not really "eating" from me yet, anytime I feel she's acting hungry/interested to go ahead and put her to the breast -- she said at least it'll help our relationship.. and my milk supply.  I was very happy to hear that because it's another thing that gives me a little "freedom" in Meagan's NICU world. So for now, she will stay on the feeding tube unless she starts to eat more, and more consistently, from the bottle or breast.
We still have no ballpark time on her coming home - which is hard - but, we do know she is in the best care possible and getting everything she needs right now. We just pray that she keeps making progress so we can get her home as soon as safely possible.

My mom found a cool thing - a book for kids about Hydrocephalus.  It's based on a real life family who has a daughter with Hydro.  It's very well written - and simple for the kids.  My oldest read it to us tonight, and besides the expected questions, they seemed to understand the Hydro a little more.  This was very exciting for them because they haven't even seen their baby sister yet, so each little step like this helps them feel more "involved" and a part of Meagan's life.  The older girls took some newer pictures of Meagan to school to share. They lovved it and asked for more.  The teachers have been wonderful  - and said for the girls to bring in as many pictures as they want to.  Their response to me when I voiced a little concern over some pictures because of Meagan being hooked up to machines/tubes was "We are all God's children - it's ok for the girls to bring in pictures of their baby

That's about it today - great progress in the feeding even though it still has a very long way to go, I'm glad she's at least starting to suck.  I know her OT, PT, and Speech therapists will continue to work with her and help her keep progressing.  We don't have a timeframe on her discharge from Children's yet - it looks like we'll be in for another week at the very least.. probably two.  It's getting rough going back and forth and splitting our time between Meagan and our other 4 children.  I miss my older girls when I'm at the NICU most of the day, knowing they'd like to see me. ... but then when I'm with the older girls, the only thing I think about is Meagan so I'm distracted.

I've realized Meagan being the 5th child is a positive and a negative at the same time -- a positive thing because Brian and I are grounded in our parenting and our marriage , and Meagan will have 4 older sisters to help her, stimulate her, and love on her for the rest of her life.  It is a negative because having had 4 other children, I know exactly what Meagan and I are missing in these early weeks of not being able to be together... so that makes the seperation more difficult. 

We're taking the 4 older girls on a special outting tomorrow with just Mommy and Daddy so they get time with us. We are very excited to spend time with them as well and give them some one on one attention.  However, some of the best advice came from a fellow Hydro mom - she told me not to worry about the seperation time from the other children.. .she told me that Meagan just being in our lives changes everything - so the other kids are going to need to learn and be tolerant of her needs.. and this is just the beginning.  She told me they also need to understand if ANY one of them were in need, we would be right by their bedside just as we are with Meagan.  And she's right... when any of our girls need us, they absolutely become the focus.  The girls seem to get this - and they'll be stronger for it.  I can't wait until Meagan comes home and they love on her! She is one lucky kid!

Bone starting to be a lot more noticeable on Meagan's forehead

So much more calm today!

Loves to be held

Daddy and Mommy "catch up" on sleep... sort of.

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