Sunday, November 28, 2010

Feed Me! Feed Me!

Angelyn's latest weight was 4lbs 3 oz. She is gaining very steadily and starting to look a lot more like a term baby. Basically, now we are just waiting for her to wake up and eat. She is still pretty zonked and I don't get too much response when I go to offer her breastfeeding. If she is awake, she will open her mouth and try to suck 3 or 4 times. But I can tell we are still a long way off from latching on.
We had a consult with Annie, the Occupational Therapist (a.k.a. glorified lactation consultant). She gave me some helpful tips on trying to prep Angelyn orally for feeding. She was also encouraging about not giving up too soon if Angelyn looks tired. The baby is basically like a slow computer that can't take too much input at once. Just give one command at a time and see if she responds. Don't bombard her with too many commands or else she will freeze up.
Baby's fist in mouth: step 1 of prepping for non-nutritive feeding

Annie was also full of accolades for me about my previous success in getting Adam to nurse 2 months after he came home from the NICU. And, I must confess, I appreciated it. It really was one of the greatest victories of my life and it was really, really hard. I have since come to the conclusion that, while I'm really glad I didn't give up, I would not blame any woman for giving up. For two months, I followed this regimen every 3 hours:
Step 1: Nurse
Step 2: Offer bottle (not knowing how much he really got from the breast)
Step 3: He would drink it ALL.
Step 4: Hang head in despair that he is getting nothing from the breast
Step 4a: Thrust baby into daddy's arms out of pure frustration. Leave the room.
Step 5: Come back and pump
Step 6: Try to do something unrelated to feeding for 20 minutes
Step 7: Repeat steps 1-6
Then, finally one day in July, he decided to do it. Not just kind of do it, but really do it. He nursed all his feedings from that day on and I didn't have to pump any more.


So, I think this is one area in which it might help to have had this experience before. Maybe my expectations will be more realistic, knowing it may take her a while to catch on. Still, I'm a little wary as we step into this phase. I hope I can muster up the patience as she sets her own pace, knowing that we still have a long road ahead.


This cute little hat was made for Angelyn by one of our friends from church. The NICU said we would have to put it through their laundry but we got it back by asking after it every day. Isn't it so cute? The fuzzy fringe makes her look like a character from Dr. Seuss.

Thanks, Liz!

Saturday, November 27, 2010

Do you like milk with your pumpkin?

The giant pumpkins we grew in our yard this year yielded a total of 59 cups of puree. We have been freezing, baking, and giving it away. Why did I puree all that pumpkin, you may ask? I don't know. A diversion, I guess. When did I find the time to do it? I don't really know that, either.

Adam found the miniature loaf pans I bought and got really excited to make bread. He is my little gourmet helper in the kitchen. In fact, it is usually over some baking project or other that we have our most meaningful bonding moments. And, since he is usually his most congenial self at this time, I decided to use the opportunity to have him practice reading a few words from the recipe.

We arrived at the line reading "16 oz can pumpkin"

c...a...n. can. no big deal. He is most accustomed to reading words with 3 letters max.

I glance at the work "pumpkin." All of the letters make the sounds he knows. No weird exceptions or rules to try to explain. He could probably do it.

p...u...m....p...k...i....n. Each letter gets it's own sound for the first few tries, but this one is going to be tricky to put together. We should probably break it up into two parts.

p...u....m...p. It is still slow-going. I say, "first part is 'pump'"

He lights up. "MILK!!!"

Monday, November 22, 2010

Prelude

It seems like a lot has happened since my last post. Angelyn is now at 3 lbs 12 oz (1710 grams) and continues to gain about an ounce every day! We have been doing what they call "non-nutritive breast feeding" for about a week now. Basically, we are practicing and trying to get her ready to feed, without expecting any milk transfer yet. (More on this later.)

Thanks to some maintenance work being done in the NICU, Angelyn was moved over to a little alcove in the special care nursery....which just so happens to be right by a window!
Well, it didn't take us long to figure out what to do with that window.
Sisters
(More on this later.)

BrothersYes, it was one of those tender (albeit brief) moments that make life worth living.

I have always felt that introducing the siblings to their new baby is pure joy. I am not officially going to count this as that moment, though. Only a precursor to the big day when we get to bring her home!

Monday, November 15, 2010

All Good News

We'll start off with the best news of all: Last time I saw Dr. G, he told me that Angelyn had her checkup from the Pediatric Retinologist. The conclusion from that exam was that her eyes are PERFECT. Yes, that was the word he used. (He also used the word "superb" and he was actually smiling when he told me the news.) In fact, they are so perfect that the eye doctor said Angelyn doesn't need any more retinal follow up.

"Really?" I said.

"Really." He said.

"No follow up?" I said.

"No follow up." He said, still smiling....

Wow. I guess that is that. I had been under the impression that since she is still exposed to the oxygen, and will be for several more weeks, there was still some threat to her eyesight. But Mollie NNP assured me that, based on this past eye exam, since all the vessels in her eyes look healthy, the threat posed by the oxygen is considered insignificant. So grateful for this news. Another prayer answered.
Last night was the first time Weston held her. We had a nice time snuggling her and admiring her beautiful new cheeks.
That's right, folks. Cheeks.
Cheeks!
Don't get me wrong. She is still teeny tiny, tiny. But it's nice to see a little pudgy growth on that tiny face of hers. Her weight last night was 3lbs 5oz (1500 grams). I'm a little skeptical of that weight. It was a 3 oz jump from the night before so I'm thinking it might be a fluke and will probably go down again tomorrow. Maybe they weighed her before her diaper business was done. However, her growth is still nice and steady so what am I knit-picking about? Is that how you spell knit picking?

Sunday, November 14, 2010

Life At Home

When Home Becomes Dairy Farm.....
Annelise ~ November 2010

Everyone wants in on the action!
Peter ~ May 2006

It's just part of life when baby is in the NICU.
Let me just say for the record that I'm really grateful I wasn't born a dairy cow.

Monday, November 8, 2010

Status Quo

Well, I keep waiting for the day when I have some dramatic news about Angelyn's weight gain to announce, but she doesn't seem to be in such a big hurry. When her IVs came out, she stopped receiving the added calories and fat (TPN and lipids) that were helping her boost her weight up. That left her relying solely on my breast milk (now up to 24 ccs every 3 hours) with some added fortifier to help her grow.
She leveled out at 1240 grams (2 lbs 12 oz) and maintained status quo there for 4 solid days. Consequently, today they decided to boost her fortifier up to the highest quantity of calories we can add (27 cal). So now her feeding consists of 50% breast milk and 50% fortifier (essentially formula). I'm okay with that for now, as long as it is going to help her gain. And it looks like it will. Tonight she finally broke with status quo and shot up to 1290 (2 lbs 14 oz).
Kangaroo care is going well most of the time. I am allowed to hold her for 1 hour every day as long as she is stable and co-operative. Some days we make it the full hour, some days I have to put her back after only a portion of the hour has passed. Most of that is due to the fact that her brain is still so premature and incapable of sustaining consistent breathing 24/7. So, this is all considered normal and the expectation is that she will outgrow it. That doesn't make it any easier for me to watch when she just decides to stop breathing and takes a long time to decide to start again. Man, I hate that.

Some days when I go to see her, I get lucky and show up at a time when she wants to be awake. She opened her eyes quite a lot for Weston when we were both there on Saturday. She doesn't quite have the ability to focus yet, and the nurses tell me she can really only see through a very small diameter and only as far as 6 inches from her face. Still, it's nice when she tries to open up and gives us a few moments to pretend that she is aware of us.

Wednesday, November 3, 2010

Happy Day

Today when I walked into the NICU to see Angelyn she looked so good I almost cried. The IV in her arm was removed last night, and so was the pic line in her head. Her nurse chose to celebrate by giving her a fresh bow and getting her dressed!
Here you can see the difference. The photo below shows the cumbersome IV in her arm and you can also see the pic line.


So now we are just down to the nasal cannula for oxygen, and the feeding tube...plus all the leads and probes in place for monitoring. Speaking as a former hospital patient, every cumbersome and uncomfortable device that comes off is something to celebrate! As I cuddled her today and gazed at her head, instead of tape and tubing I admired a sea of blond hair.
As far as her weight gain is concerned, I would say "slow and steady wins the war," but it's not really very slow and not really all that steady. I was hoping to be able to tell you she broke 3 lbs today but her weight tonight dipped back down. Now she is at 2 lbs 11 oz (1220 grams....last night she was at 1330). But don't worry...when she does hit the big 3.0 I will definitely let you know.