Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Wednesday, October 5, 2011

New goals and snuggly moments

The last two days have been 'mostly' good for little Miss Meagan.

Yesterday was huge because she came OFF the oxygen!! She still kept the canulas on all day in case she had a lapse etc.. but she did great.  From the minute they turned the O2 off, she said "See ya oxygen! I can breathe ALL on my own!" :)

The NICU doctor came by and talked with us - she said the NSG (Neurosurgeon) had pretty much handed over Meagan to the NICU.  In other words, the NSG was totally happy with her shunt, its placement, its functioning.etc...so he signed off on her to work with the NICU team on the rest of her little hiccups so she can work towards going home.  They said the reason her site was SO puffy was because of where the NSG had to place her shunt.  Apparently, because of the type of Hydrocephalus Meagan has, he had to put it over her cranial bone, so the shunt sticks out quite far compared to other surgeries he has done.  He said other than looking "funny" though, it was functioning perfectly, and looked great.  He said this was the best spot for her condition personally, so they went with it.  I'm not really concerned - the main thing is we want a device that works the best it can... she'll have plenty of hair by Prom :)

The doctor was very informative.  She addressed our concerns about the shaky/tremor activity and said the best thing to do would be to refer us to a Neurologist and let them take it from there.  She said if we notice something abnormal or different, please always ask because even though they have the medical knowledge, we know our babies best.  And she also pointed out that Neuros are really hard to see as an outpatient - somtimes you wait months and months.  She said she wanted us to meet so if, God forbid something DOES go wrong, the Neuros already know us, know Meagan, and know how they can help her best. They will also be the ones to order the baseline EEG. Of course the NSG will still be involved since she has a shunt and will be shunt dependant her whole life.  It was SO nice to see everyone working so nicely together and communicating openly about plans, changed plans, and potential problems Meagan (and us) may face. 


Today, we went in and, there was Meagan's beautiful face!! NO oxygen tubes - YAY!  She looked so much different.  She was very alert, eyes open looking around... she was squirmy.. for the first time she was stretching like newborns do when they wake up.  It was a great to see her so alert and doing so many "normal" things I have seen with my other four girls in their first few days of life. 

What we saw when we walked in! No oxygen tubes and a smirk! 

The speech therapist wanted to come work with us to try Meagan on a bottle.  She sucked a little, but, basically had ZERO interest. LOL.  Which I find funny because she does take a Paci like nobody's business.  She will suck on her Paci like it's her job - so - with time, we're hopfuly she'll get the bottle feeding.  The Therapist said we'd try again tomorrow - if no improvement, they'll call the LC in and have her help me get Meagan to the breast.  The LC told us earlier in the week it's really a toss up what babies do - especially Hydro babies.  She said she's seen both  - babies who prefer a bottle, and those who prefer the breast -- and any sort of combo of the two ...  so she said we'd just work to find whatever Meagan takes to easiest.  I told her that was FINE because our number one goal is getting her to eat and come home.  If she ends up bottle feeding, then I can just work with her at home. Being my 5th kid, I'm not too stressed over it.  I just want her to get my milk somehow - and I'm fine if I need to work with her at home a little bit.

Her head circumference did go back up today - to 45cm.  Quite honestly, I was VERY glad to see that.  Just as you don't want it too big, you also don't want it to shrink too much - she's already lost 6cm off her head, so this is a good 'plateau' point I think.

One thing that threw us for a curveball today was her genetic testing results.  We had her blood drawn after birth for the genetic testing because we had declined the earlier Amnio due to miscarriage risk.  Almost everything came back fine except a few of her markers were elevated.   Brian and I had JUST left to get lunch when my phone rang from the NICU - the doctor explained the situation and told us Infectious Disease needs to be contacted.  By the time we got back upstairs, there were 2 infections disease doctors at Meagan's bed -- we were told we'd have to gown and glove to hold her until they got more specific results back tomorrow.  Upon further investigation, though, the infectious disease doctor concluded that holding her was just fine - they took some urine to run it for further clarity.. and if that also ran high they would re-draw some blood for comparison.  So ya know - can't go through one day with out something happening :)

 Meagan meets her Ranger Bear from Uncle Mike (her Godfather)

Meagan rockin' the Cloth Diapers in the NICU

Snuggling in her blankie - Baptismal gift from Uncle Mike and Aunt Katie

On a personal note, yesterday, my left side started to hurt me -- I just kep using heat, massage, and tried to pump a ton.. but tonight, it hit me like a ton of bricks.  Soreness, hot spot, redness, body aches, and a 102.7 fever -- ugh! Mastitis had struck again.  I've had it about 3-4 times with other babies... but.... sometimes I'm able to work with it as long as I feed the baby a certain way.  Well the pump certainly does NOT work like that - so, here I am with full blown Mastitis.  Luckly my OB, once again, is awesome and called me in meds immediately -- I am in so much pain and very hot and feverish - but - all I can think about is Meagan's suffering.  Look what she had been through by just 11 days old -- I had NOTHING to complain about.  So all my pain, soreness, discomfort - I offer it up for you little girl.  Please start eating soon so we can get you home!!!

Night Night Baby Meagan! You have a very Protected Crib!

1 comment:

  1. Just catching up on your last few updates about Meagan! I am so pleased that she is continuing to make good progress. Slow and steady wins the race Mama!