Competitive NICU mom

I've become what I've feared. I'm now comparing Clara and Evelyn's progress with other babies. Well, actually, one baby in particular. There was another "lifer" on Perinatal with me who delivered a boy at 30w 3d five days after I gave birth. Naturally, her son had no brain bleed, was larger than Clara, and is completely on room air - no cannula or anything. Oh and his mom is producing so much breast milk that the NICU cannot accommodate all her bottles. Meanwhile I'm anxiously awaiting Clara's follow-up brain ultrasound, trying to fight back tears as the doctor tells me that they've had to increase both girls oxygen needs (again), and I'm pumping out about as much milk as a 65 year old man. Apparently I'm one of, like, 2% of women who's breast milk is completely unaffected by Reglan. It's super fun to be hooked up to the pump 4 hours a day for little drip drops of milk. And, seriously, can't we catch a break on their breathing? I think we're looking at at least 6 more weeks in the NICU and it's getting more and more likely that they'll come home on oxygen. I just want to see their beautiful faces without all the tubes and now who knows when that'll happen. So - it's ridiculous to compare them to the 30 weeker, but it's impossible not to. I know that these girls were in distress in utero for a long, long time and that we should be so thankful they even got out alive, but it's really hard when you get your hopes up and you finally find some optimism and then they keep taking steps backward on their breathing.

All that aside, some things are going well. They both tried the bottle today and did well. Hopefully this means we can wean them off the feeding tubes soon. We're also very thankful they are gaining weight and not having any trouble with their GI systems. And, certainly, we're thrilled they are off the CPAPs, IVs, and out of the bili lights. So it's not all doom and gloom. Just a little bit :) Mostly when I catch myself really thinking about the loss of a regular pregnancy and a regular set of newborns. I had figured the NICU would be the hardest part of this experience and, despite the doctors telling me that the NICU would be easier than imagined, I'm finding it really difficult. I'm simply tired of being so sad and worried and disappointed all the time.

On to other news....I'm starting back up working in the office tomorrow part-time until the girls are ready to come home. I need to reserve some leave time and I need to occupy my mind with something else. I can't sit in my house or the hospital all day and let this consume me anymore than it already does. I need to start functioning again.

That's it for now. I'll probably update again after we get Clara's scan redone. I don't think they are even going to attempt to take them down on their oxygen flow anytime soon so there's no other need to update on their progress. Assume no news means status quo.

Take care,
Kris

Desats, apnea, and open air cribs

I spoke with the doctor yesterday and she said Evelyn's having more desaturation and apnea spells than one would expect from someone her gestational age, but since she's a preemie there's no way to really say that she's unusual. It's mostly that folks are disappointed that she's not progressing a little faster. I'm guessing (and this is purely a guess) that it means she'll be in the NICU for a little longer to make sure she's caught up. I'm also wondering if it mean that she's at a greater risk for some respiratory issues like asthma later on in life. Who knows?

A couple nights ago they got moved to an open air crib. The little isolette was getting pretty crowded.

Clara's passed her birth weight (something she had done before and then she lost a bunch more - stinker). She's weighing in at 3 lbs 4 oz. Evelyn's slowly getting close to her birth weight. Yesterday she was 4 lbs 1/2 oz. I'm hoping that by today she's above her birth weight.

That's it. They're still on high flow cannulas until all the desats get under control.

Take care,
Kris

More pics - 33% less tragic

Sorry - these are all out of order. Now that they are off their IVs they get to co-bed together and they get to wear clothes. This makes them look considerably less tragic. They look more like babies and less like patients. No other real updates other than they both had to go back up to a high flow cannula. The low flow wasn't cutting it. Anyway, Merry Christmas everyone and take care.

-Kris

Photos

Kangaroo care with Clara

First time holding Evelyn - 4 days old

Evelyn

Clara

First time holding Clara - 4 days old

Clara

Evelyn's foot

Evelyn

I've got some more recent ones with them off the CPAPs and wearing clothes. I'll try to get them posted soon.

Take care,

Kris

Grade 1 hemorrhage

We found out last night that Clara has a Grade 1 intraventricular hemorrhage on the right side of her brain. If the nurse practioner and the internet are to be believed, a Grade 1 IVH is not that big of a deal and relatively common in preemies of Clara's size. Grades 3 and 4 are the ones of real concern. They'll re-ultrasound her in two weeks to make sure it's not any bigger.

Take care,
Kris

IV-BE-GONE Part II

Evelyn's off her IV. Clara is a little behind and probably won't go off for several more days. Evelyn also went down to a low flow nasal cannula (although I'm not all that sure she's going to stay on it). Clara should go on a low flow cannula tomorrow.

We got Evelyn's brain ultrasound results and they are normal. For some reason, Clara's hadn't been read yet. We're hoping to know the results in a few hours.

They are now eating more breastmilk than I can provide. I'm producing enough for one baby, but not two. I started taking Reglan to increase my supply - we'll see if that helps.

Take care,
Kris

Progress

The girls are doing well. Both are off the CPAP and on a high low nasal cannula. This makes them look much less tragic since they only have small tubes going into their noses now. Next step is a low flow cannula and then, eventually, weaning them off to room air. They both responded well to the medicine for their heart defect and both of their arteries closed. Both are also taking breast milk. Hopefully Evelyn will be taking in enough to get off her IV tomorrow with greatly lowers her risk of infection. Clara's a couple days behind Evelyn because she kept getting nasty gunk in her feeding tube thanks to the CPAP blowing stuff around. They got their brain scans today to look for IVH -we should get results back later today or tomorrow. Evelyn's had some apnea episodes and is now on caffeine. I thought I'd help things out by adding more Dr. Pepper into my diet before I pump :) Anyway, they said apnea is pretty normal at this stage as they wouldn't need to be remembering to breathe if they were still inside me. They'll just continue to watch for it and treat it when it comes up.

So, all that's really left is getting them off the IVs, getting their respiratory requirements down, and teaching them how to suck/eat. Once those are done, they just need to grow and get stronger.

I think that's it. Greg and I are excited about their progress. We're also very happy that we get to hold them a little now - once a day.

Take care,
Kris