Update on Z

Z had her ph probe test earlier this week which showed reflux but not severe so she will NOT need the fundoplication (yea!). She will still get her G-tube which will probably happen in a couple of weeks. Will update more later...babies crying.....okay, it's a few days later and I'm back.

Z has done some amazing things in the last few days, she has taken a 20 cc bottle with her dad and she has breastfed with me for 10 minutes! We are so proud of her. No one expected her to be able to do much in the way of oral feedings, but true to form she has continues to surprise us all! She will get transferred over to the Children's Hospital early next week for her G-tube surgery, bronchoscopy, and hearing aid fittings. She should only be there a few days and then she'll get taken back to Northside where she will stay until she is discharged. I hate that she has to have any procedures especially because she will have to be under general anesthesia and she'll have to be back on the ventilator, which is so uncomfortable. I am hopeful that they will be able to wean her off the vent as fast as possible, I don't know the doctors and nurses at Scottish Rite and I have grown so comfortable and accustomed to the docs and nurses at Northside that I am wary of her being there for too long. They don't know her the way the Northside folks know her, so Richard or I will have to stay with her at all times to make sure she is being properly attended to.

I can't wait until she comes home...I am starting to get antsy again. It comes in waves, at the beginning I was antsy because there was no known timeframe or if they would even survive. But then, as the weeks passed and the girls either improved or remained stable I settled into the routine of the daily visits, talks with the docs, etc and I accepted that it would be a few months and this was my life at the moment. And then they started to get better and bigger and there is talk of going home, and I can see that light at the end of the tunnel and I have visions of home with my babies. Every day I wake up and think" oh gosh, here we go again, one more day of this and still no discharge day". I get lost in my daydreams of waking up in the morning with all my girls under my roof so we can all snuggle in the warm sheets or kick back on the sofa and watch SportsCenter with dad....I'm growing impatient it's been so long. Six and a half months!

Again, I am reminded over and over just how special these girls are. They are just incredible, when I think back to when they were born, the state of their health at that time and the fact that they needed 15 more weeks inside my womb! It is astonishing - they are amazing, so strong, so brave, and all this in such tiny, cute little packages! I just love them so much, my heart is full to the point of bursting, I feel this love that has overtaken my body and it is by far the most wonderful feeling in the world.

So, back to Z's medical report - all in all she's been doing well, she's still bouncing between 1 1/2 and 2 liters on her nasal canula which, once she recovers from the g-tube that's the only thing that will keep her in the hospital. As soon as she can get down to 1/2 liter and not need to be turned up she can come on HOME!! We've also learned that Z likes Brazilian music - yes, she does have severe to profound hearing loss, but we still don't know exactly what she can hear. So, Dr. Manar was rounding on her and had her in her lap while she was charting and Z got a little fussy, so Dr. Manar pulled out her Treo and turned up the volume and put the music to Z's ear with some great, beat heavy Brazilian music. She said Z looked like she was listening to it and smiled several times through three songs until she said she'd had enough. I was thrilled to share this news with Monica (Noah's mom) and she said she'd make a cd for me. I'll have to add it to Z's cd collection along with the Baby Mozart :)

I think Z may just be the most popular baby in the NICU - everyone knows her and everyonw stops by to talk to her and check on her. She is so social and if you're trying to do some kind of developmental work with her but someone stops by to say hello, she stays focused on the visitor, not her exercises. I am so proud of her, so full or admiration for my little baby who has already taught me so much about faith and love. Keep her in your prayers next week. I'll update everyone once we get through it.

1 comment:

nancy said...

Such good news about Z! Get the music with a good backbeat ready . . . it sounds like she will be home with A and L and Mommy and Daddy soon after her surgeries! Love, Nancy

All time favorite video of Zoe!

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Bible verses that comfort me

"Yes, we are fully confident, and we would rather be away from these earthly bodies, for then we will be at home with the Lord."
~ 2 Corinthians 5:8

"Let the children come to me. Don't stop them! For the Kingdom of God belongs to those who are like these children....Then he took the children in his arms and placed his hands on their heads and blessed them"
~ Mark10:14 & 10:16

"...those who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint"~ Isaiah40:31