Saturday, February 2, 2013

Heart times in the NICU & Now

Sorry to get sappy again, but I got some great news recently that reminded me of the day I grabbed my little girl and ran like a bat out of hell from the NICU.
February 2009
The great news we received was from the cardiologist. 

February 2013
You see, our little girl was born with a "PDA." It is not uncommon in preemies, and it stands for "Patent Ductus Arteriosus." I think it means that the valve that connects blood between the lungs and the heart in utero does not close once baby is out of utero.

We struggled with this a lot in the NICU. The little boy's closed up right away; but not the little girl's. It was not quite discovered in the first week when the kids were getting all kinds of meds through their belly buttons and it would have been easy to administer another type of drug at that time. But they could not keep the lines in their belly buttons open forever; this is a very limited option. In the middle of the second week, he was getting to the point where he could be fed breastmilk and other assistance through a tube and start growing. She got started on this trend, and let me tell you that nothing feels better than being able to feed your child 2 cc's of breastmilk when you can do nothing else for her, but had to be stopped right away once they discovered the PDA.

We had to stop feeding her and they had to thread a central line through her tiny little veins in her arms up around the shoulder and down into her chest into her heart to administer a special drug that could close up the PDA. The central line was attempted THREE times. She wasn't even 3 pounds; they told us to imagine it on a 'micro-preemie' [they are under 1 pound.] [That thought is no comfort, only sad.] That was an entire day of us sitting outside the room, hearing her preemie cries, and seeing the doctors run out of the room in frustration. We could not watch. They did not want us to watch. But we couldn't not be there. We sat on the floor in the hallway and bit our fingernails.

By 8 PM the central line was in, and we start the clock on three days of this special drug.

Kangaroo care, in which you hold a preemie under your shirt close to your naked chest, and preferably with the baby unclothed as well, is one of the most important ways you can bond and help your preemie grow.

During these three days, in which I could not feed my baby; I could also not hold her. Only hubby. She could smell the breastmilk on me and being that she couldn't eat, she would fuss and root and cry uncontrollably if I held her. She was one hungry kid. I understood, but I could not hide my tears. I held the little boy and cried. I went to the pumping room and wept.

After these three precious days, I, with new determination, began to feed my little girl through a syringe and a tube again, and then, we got the news. Her PDA was not healed.

Back to central line. Back to three days of drugs again. 

Back to holding baby boy again. 

I still changed her diaper, I still held her hand, but Daddy and Grandparents were in charge of Kangaroo care.

It was absolutely horrible

There were certainly worse things going on in the NICU.
I don't have to have a pity party about it anymore, you know I now have healthy children. 
But you try NOT being able to hold onto that pregnancy, 
NOT taking your children home
NOT being able to breastfeed
NOT knowing what they were going through
NOT being able to HOLD your child through it
 and NOT being successful on the first
-and second-

No, the second round didn't work either. 

Then started the discussions of whether or not to operate. She would get a little coil inserted in her heart that would close up the valve and make it as though this never happened. It is relatively routine.

We got first, second, and third opinions. A friend of the family had a son who happened to be a pediatric cardiologist. We emailed and spoke on the phone with him endlessly. 

We discussed at home, in parking lots, on the phone with our parents, on the phone with each other.

We couldn't take another minute without her care in our hands. We didn't want any unnecessary surgery. We were advised that as long as she was growing in the next few weeks, we could even wait until she was a year old to do the surgery. 

We decided to wait. 

We fed her. She ate. and grew. AND ATE. and grew. 

Like I said, baby girl was hungry.  

And I held her. Endlessly.

And she came home ... eventually ...

The first rule about a typical day in the NICU is:

That said, once you have 'feeders and growers', you do find a certain rhythm to your visits. 
These memories may come back in bursts...bear with me... for another post on another day...

But the great news is, that after four years of seeing this wonderful doctor, her pediatric cardiologist at CHOP, he literally told us:
"Don't come back."

Her PDA was not closed, but it had not grown, as she did. So in a sense, it was getting smaller proportionally. She's good to go.

As you can plainly see...

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