Monday, September 8, 2014

Could the end really be in sight?

Today was the day I was scheduled to deliver Zoey.  Eight weeks to the day after she was actually born, and still three and half weeks before her due date.  I'm not sure I can accurately describe how I feel about this.

It's been 56 days since the chaos began and I'm almost hesitant to write this, but we should be very near to the end now.

She's still taking all of her feedings by bottle and has been allowed to eat ad lib; meaning she can take as much as she wants (currently that's averaging out to about 50 ml or 1.7 ounces) and as of today, when she wants.  She won't be allowed to go more than four hours at a time, but she won't be held to the three hour schedule she was on.  This should help with her alertness during feedings making them quicker and usually not as sloppy as when she's still half asleep.  The truly amazing thing for Tom and I is that for the most part, she takes her bottles in under 20 minutes; and the nurses told us that is kind of slow.  Tera was averaging around 45 minutes for each feeding even when she was not a newborn.  Her low muscle tone, tongue, and lack of coordination made each feeding long and messy and they exhausted her.

The only thing currently keeping her in the hospital is her inability to maintain her own body temperature.  They've tried twice to put her in an open crib for a day or overnight and both times her temperature dropped below where they want it.  They also found last week that her red blood cell count was low.  Apparently this is not abnormal for babies at one to two months, but because most babies aren't in the hospital, it isn't checked and it's not of any real concern.  In Zoey's case though, it could be contributing to her inability to keep her temperature up.  So today they decided to give her a third transfusion to see if that helps.  If it does, she'll have to maintain her temperature for at least two days and then we are out of there!  If all goes well, and I've confirmed this with the doctor and her nurse, it is feasible that she could be discharged by the end of the week.  The two possible hiccups would be if she doesn't make it in the open crib, because then they would have to wait at least 24 hours before they try again, and if she didn't pass the car seat test.

For those of you who have never had a child in the NICU, most babies that have even brief stints there, have to pass a car seat test.  It is basically to see if they can maintain breathing correctly in a car seat.  They usually place them in there for 90 minutes and they can't have any oxygen desaturations (or possibly just any that they can't recover from on their own) during that time.  In the meantime she will receive all her vaccinations, and I was happy to find out, because I believe very much in vaccinating my children, that due to her premature status she is eligible to receive the RSV vaccine in November.  As a mom with two children with compromised lungs, I will do anything I can to help prevent them from getting a sickness that could put them at an even greater risk.  She will also have the echo of her heart repeated and the head ultrasound repeated.

On Sunday we brought Tera with us for a while so she could see Zoey for the first time without her oxygen and NG tubes and for the first time ever, I was able to hold Zoey in my arms while Tera sat next to me and it was amazing.  I couldn't believe I had both of my daughters so close to me at the same time.  Tera did great and very gently kissed her baby sister's head several times and showed us how little she is.

And so as it gets closer and closer I get more nervous that something will prevent her from coming home.  We've been waiting for this for eight weeks and while it might seem to some people that if we've waited this long already, what's one or two more days.  But we've already waited 57 days.  I waited nine days just to hold my newborn baby.  She was on oxygen for 21 days.  On a feeding tube for 49 days.  Every day has counted so far and I don't want to count even one more.

Her room is ready. We think Tera is ready.  We are more than ready.

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