It's still strange that my life has been turned upside down. I definitely have moments during the day where I think, "This must be someone else's life." But with as many tears as we've cried over the last 2 weeks, right now, I'm just humbled and thankful for each day and the amazing number of prayers that have been answered. I cannot thank each of you enough.
James' latest email is below. As you'll read, we've come a long way in the last few days. She just looks and acts like a regular baby ... well, a baby with a dialysis tube sticking out of her side. James also attached a picture from yesterday. All the fluid that built up in her system while her kidneys were failing has finally drained out and she actually looks skinny to me!
Someone asked me earlier today what the timeline looks like - something I personally try not to ask the doctors, but of course, I do anyways.
It's anyones guess, but the nurses are guessing we have 2-3 more weeks in the hospital ahead of us. (I've learned that NICU doctors never make predictions no matter how hard you press them, so I'll take the nurses' predictions for now.)
Before we even get to the discussion of going home - or even better, going home without being on dialysis - her levels need to drop even more and hold steady in the safe range for 5-7 days in a row to prove that her kidney function has returned and is strong enough to do the work on its own.
Our prayer requests remain the same - that the seizures don't return, that her kidney function returns and that she has the strength to fight her way back 100% and get home soon!
Read below and take a look. Much love, Sarah
----- Forwarded Message ----
From: James Lary
Quick medical update:
- Creatinine saw another small drop overnight, so we are still at dialysis for
12 hours instead of 24.
- Sarah can now nurse whenever she wants to, which makes Porter very happy...and
more room in my freezer.
- She passed her hearing test with flying colors, at the lowest setting. I had
no doubt that she would because she is turning into a daddy's girl and knows the
sound of my voice.
Now that she is starting to act more like a baby, I thought I would share some
tidbits about PK that we have observed over the past few days. I am sure Sarah
will inform me of a few that I missed, but these are off the top of my head.
1. She has dimples. Not sure where they came from on the family tree, but they
are there.
2. She makes serious faces like her brother did. Luke is a very smiley boy, but
as a baby he was a very serious little man. Sometimes I think I am looking at
Luke.
3. She loves the pacifier. She has actually figured out how to hold it in her
mouth with her right hand.
4. She loves "baby massage". When she was retaining fluids and was puffy, the
occupational therapist taught us some massage techniques to keep her joints from
getting stiff. We still do it to keep her range of motion since we can't move
her very much due to the dialysis, and she is like butter once we start and it
is a fun way to play.
5. She has my feet. Long and skinny, skinny ankles, and she can spread her toes
really far. Those of you who have seen me pick up large objects with my feet
know what I am talking about.
Also, I have been asked to send out a more recent picture, so there is a new one
attached. She got a bath the night before this was taken and the nurse fluffed
her hair, so it is a bit crazy. I don't think that dark hair is going anywhere.
Have a blessed day,
JL
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