"They" say time in the NICU will be one step forward two steps back. "They" don't tell you that the steps back will actually feel like you are hurtling off of a cliff at 100mph blindfolded.
We are back in the corner. We are back on CPAP exclusively. We almost went back on the ventilator. We are withholding feedings through the tube so we are back on IV nutrition. It has been a long hard couple of days.
Withholding the feedings even though they are through a tube and she never actually was sucking for nutrition has left her hungry and wanting to suck on positively everything in site. Give her a pacifier or your finger and she will go to town, she is very hungry! She gets so wrapped up in the sucking that she forgets that whole breathing thing and she stops, then her heart slows down to almost stopping. We have spent two days in the balance between "Don't over-stimulate her" and "Jiggle her and pinch her toe to get her breathing again". Terrifying.
She has been working so hard at breathing and digesting her feedings that she is just plain tuckered out. We are too.
However, we seem to have turned a corner. The X-ray tonight looked good. The echocardiogram this afternoon let us know that it is not congestive heart failure, yet. We are heading back towards the good side of life. It is very encouraging.
Slowly but surely...
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9 comments:
Oh Blue, the heartache, how terrible! Poor little Azure, she must indeed be exhausted. She sounds like such a fighter. I'm so sorry there are setbacks. I am, as always, thinking good thoughts for all of you. I'm so sorry that's all I can do.ntlsy
It's all just exhausting and terrifying. I hope you're hanging in, nice lady, just like lovely Azure is...
There is no way to understand the "two steps forward, one step back" of the NICU until you're there. And having been there, I hate that you have to be there now.
Here's hoping that your next two steps forward come soon! Thinking good thoughts for you and your sweet Azure
I am also going through the NICU experience and trying not to lose my mind in the process. Azure is a fighter, no doubt about it. Hang in there, I know how hard this is.
Much love to you and your lovely one.
They tell you it is going to be a roller coaster ride and there will be ups and downs. Nothing prepares you for the downs. Nothing. It is hard and scary and the only way out is through it. I hope that things start getting better quickly. We are sending you all the positive thoughts we can. She is beautiful and strong; and so are you. Much love!
dear g-d blue, no one should have to endure that kind of fear and stress. I hope she comes through it soon. I think of you everyday.....
This must be the worst sort of limbo: occassionally sticking a toe in the "hell" side, and then sometimes in the "heaven" side as you go along.
I can't wait for it to be over, and the relative boredom of motherhood to set in.
Julia
Uncommon Misconception
It is so difficult sometimes. I'm thinking of you often and sending my best thought your way.
Just found your blog - thinking of you and wishing your the best. 16 years ago my son spent 4 weeks in a NICU so I know how difficult it is. Hang in there.
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