Lina since then

Well, I’m skipping over a lot of detail here. It’s been 2 months since Cole died. Hard to believe. I still miss him terribly, and cry about him a lot. Lina’s doing well, though, thankfully.

On the night that Cole died, they called to tell us that they thought Lina had an infection called NEC (necrotizing enterocolitis). It was the last thing we needed to hear. It’s an infection in the intestine and can be very, very serious. Fortunately, I think they caught it early. They started her on several antibiotics, and it seemed to clear up relatively quickly. She was on the antibiotics for 14 days and they held her feeds for that time (she continued to get TPN – nutrition through a central line – but they held the feeds of breast milk they were delivering through a tube to her stomach). Although the infection was cleared up, her belly was very distended all the time, and she didn’t poop much. This was a concern. But repeated x-rays just seemed to show lots of air in the belly. There was some concern that she might have a stricture in her intestine, a common complication with NEC. There was talk of doing a “contrast study” where they inject a dye into her intestine and take a series of xrays to see if there was a blockage. But fortunately it never came to that, and she seemed to work out her issues.

Her belly is still distended a lot, but she’s never shown any more signs of infection. I think she just gets a lot of air in her belly from the CPAP.

She’s grown. The last time I posted about her, I think she was 500 grams (about 1 lb 1.5 oz). Now she’s 1650 grams (3 lbs 10 oz). She actually looks like a real baby! She has a little double chin and everything.

She’s still in the isolette, but the heat is off. That means she has to regulate her own body temperature (she used to have a sensor that would make the isolette’s temperature go up or down to keep her at the right temp). And we dress her in clothes and swaddle her.

We started to work on bottle-feeding about two weeks ago. Once a day we try to give her a bottle. She only manages about 5 to 15 cc’s before she poops out. Then she gets the rest through her gavage tube (she’s taking about 32 cc’s every 3 hours now). Part of the problem is that she has a hard time making a seal on the nipple because of the tube in her mouth. If she could get off the CPAP, we could put the tube in her nose which would make the bottle easier.

Speaking of CPAP, that’s our big challenge. She’s on “room air” right now, which means the oxygen level she’s getting through the CPAP is at 21%, the same as in the air we breathe. But she still needs the CPAP to give her a little extra support when she breathes. The past few days we’ve been trying to take her off little by little. She’ll be off for 15 minutes here, a half-hour there. She becomes tachypneic though – meaning she breathes really fast to compensate. And that tires her little body out. It will come, but when…

So anyhow, long story short, she’s doing well. She won’t be coming home next week, though, which is what we’d hoped. Her due date is January 8th, and we’d been told that we could probably expect her to go home around then if all went well. One doctor/nurse I talked to said we could probably expect her home more like by Valentine’s Day. My heart sank. That’s another month+!!! Another doctor/nurse though didn’t seem convinced it would be that long. Still. It won’t be next week.

Here she is at the beginning of December – she how chubby she’s gotten? And that’s almost a month ago.

sisko-lina.jpg

And doesn’t she look cute in clothes?

lina-cute-in-clothes.jpg

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About Me

I'm a grieving mom. I have one beautiful daughter, Annika, who's 3 years old now (born 12/28/04). I also had twins, Lina and Cole, on 10/04/07, born at just 26 weeks. We lost Cole after just 23 days due to complications related to his prematurity. Fiesty little Lina overcame so much and just when she was getting ready to come home with us, suddenly had a complication unrelated to her prematurity and passed away on January 11, 2008. This blog is about getting through it. More...

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