As you know, Haddie had a successful surgery on Friday. Recovery, however, has been a little slow. They moved Haddie to the NICU West side after surgery because that's where babies normally go after a surgery. Kate and I have not been big fans of this decision. The West side is all open; no doors and no privacy. But worse than that, they don't really know our daughter there. Everyone has been real nice but we feel a few of their decisions have slowed down her recovery and those decisions were made because they don't know Haddie's quirks and personality.
Up until yesterday Haddie was pretty much out of it. That is due to them giving her morphine every time she would get feisty. They assumed her being feisty meant that she was uncomfortable...but we know that's just how Hadassah is. Yesterday we advocated for her and asked they reduce the morphine. She's not in pain and if she is going to breathe on her own and get off the breathing tube, she probably shouldn't be asleep all the time. They agreed with that.
Then we got a call late last night from a nurse asking us if it was normal that Haddie was having little ticks or tremors. We know, and so does our regular team, that Haddie has those little shakes sometimes. We aren't sure exactly what causes them but they aren't seizures. The nurse last night freaked out a bit had her checked for seizures. Sigh.
They are going to move us back to the Northeast NICU soon they say. We aren't sure what exactly they are waiting for. The NE side can do exactly what the West side is currently doing plus they personally know our Haddie.
We are constantly praying that we are kind and loving to the people on the West NICU. It's very challenging because we are tired, we want her to recover quickly, and we want to get home in a few weeks. But it's all good. We know God's in control and soon Haddie will start to make quicker progress. She's made some improvements this morning they said.
So that's our life right now. Thanks for the prayers!
*** Got a call shortly after I wrote this that we will be moving back to the NE NICU today!***
Janet has gone through these situations with Jeremiah, my nephew. He was born with spinal bifida and lots of breathing problems. I learn a lot watching Janet. One thing I learned is the doctors don't always know best. Jeremiah never reacted to meds the way other children did and he never presented with the same symptoms as other kids. Janet would occasionally run into Dr.s who would overlook his uniqueness. More than once, Drs. caused setbacks in his treatment because they didn't listen. There have been times in Jeremiahs life where Janet has had to argue, fight, personally monitor his care, ect. It creates extra stress and then she worries if she's doing the right thing. You are the best advocate your daughter could have but if you find yourself getting stressed and need to talk to someone who understands, just send her a message. She is on facebook, Janet Parr Smith.
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