Saturday, January 23, 2010

Piper’s Story, Part 5

When Piper was born, she was very close to being "small for gestational age".  She missed it by about 15 grams, I think.  She was purely TPN fed (where all the nutrients, fats, vitamins, liquids, etc are through IV) for 9 days.  That night, she was able to start getting 3 ml every 4 hours of milk.  They gradually moved up (they were very very cautious because she was still so small), until she was up to full feeds at about 3 weeks.  During this time, it was very difficult for her to gain weight.  They kept upping her calories and fats, and it'd make a little difference, but not as much as they'd like, so they upped it again.  Piper kept getting stronger and stronger, started OT every day, and was able to start "trying" on the bottle at 34 weeks.  I was at the hospital all day, every day, holding her the whole time.  I got more reading done then than I have in years.  Luke went down every night after work, and spent several hours with her then.  An amazing Dad—it’s about 18 miles to work from our house, about 20 miles down to the hospital, and about 15 miles back home.  And he got stuck cooking, cleaning, etc, a lot, especially when I was still healing.


Piper had a really difficult time learning on the bottle.  She liked to nurse, and she knew what she was supposed to do, but she didn't know how to do it.  I got frustrated.  Really frustrated.  All we wanted to do was take her home.  She was doing everything else she needed to do; she was able to maintain her body temperature very early (at 33 weeks, actually, which is several weeks before she should have been able to), she was off oxygen (although they did put her back on for about a week when she started eating more).  I missed her so badly at night; I couldn't think of anything else.  I eventually got to the point where I had to remind myself, frequently, that she would eventually get home.  I think that subconsciously, I forgot that she was ours, and that we would go home.  I mean, I "knew" she would, of course, but it was hard to remember that it was a temporary thing.

321Piper, 4 1/2 weeks old

When she started getting a little bigger, it got harder and harder for her to keep growing.  They kept upping the calories in her milk (adding high-calorie formula to her breast milk), and upping the volume she had to consume.  Most babies need about 120-130 calories per kilo per day to grow; Piper was up to about 180-190.  They upped her from plain milk (about 20 calories per ounce), to 24, to 26...  At 26, I could tell that it was hurting her tummy (and after all the damage in there, I was really leery about keeping it there).  At 27 calories, she started bleeding, so they took her off the fortifiers completely.  Then she lost weight.  So they started increasing again.  I hated it.  I hated knowing what it was doing to her insides, but that she wouldn't grow without it.

One morning, out of the blue, we got a note from the night nurse that she took ALL of her feedings by bottle the night before.  It was a HUGE first!  We continued that day-- she took every one of them!  That was on Friday.  All of a sudden, we started discussing the going home stuff.  We had to get a car seat trial (where they make sure that they don't have problems breathing and oxygenating in their seats to go home).  We roomed in on Saturday night (we found out we would on Saturday morning) and had the worst night of sleep in history.  Sunday they switched her formula to stuff she could go home on (we looked into keeping her on the stuff she was on there- it'd cost about $2500/month...) and the NNP said that she wanted to see her on it for several days before sending her home.  We were thinking Tuesday, maybe Wednesday we'd get to leave!  We were soooo excited.  Monday I get there with my Mom, and our nurse told us that we were going home THAT DAY.

I made Mom go and call Luke while I talked to the nurses-- he needed to change his plans!  She needed an ultrasound that day to check on her kidneys (she had some hydronephrosis that needed to be re-evaluated), but that was scheduled for the morning.  She ended up needing a higher-level scan, but the nurses worked really hard to get it scheduled, too.  The NNP on staff that day wrote up her report and discharge papers, and we were OUT OF THERE.  I couldn't believe that after 7 weeks, we were going home!

374 Going home day!  6/29/09

The next day, my parents, grandparents, and brother and sister-in-law came over to see her.  They could all hold her for the first time (the NICU allowed US to hold her as much as we wanted, but didn't allow family members to hold them).  I was so excited!

We even got to celebrate her due-date at home.  She was supposed to be born on the 4th of July, so she even got a July 4th shirt and socks.  What a great way to spend her first holiday!

I look back at all of this and I still can't really believe the chain of events that brought us here.  We are so unbelievably thankful for our little girl.  That she's here with us today is truly a miracle.  We can't imagine life without her!

1 comment:

  1. That brought back to many memories of trying to "grow" Aubrey. She was in the NICU for only a week, and I stayed in my hospital room, but wasn't allowed to do a lot of holding since she had to be under the lights for jaundace. We did the adding powder to breastmilk too and at 28 calorie she was so constipated that she was awake all day burning calories which total negated the point of it! We stayed at 26 for 4 months til surgery and then went home on regular.

    And look at Miss Piper now! Big and strong and healthy!