Friday, February 22, 2008

Pictures!!!!!!

Uncle Josh holding Carly for the first time (2/13/08)
uncle Josh and Baby Carly

Amaw holding baby girl for the 1st time (2/13/08)
amaw and baby Carly

Carly getting physical therapy (2/20/08)
Carly getting PT


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daddy feeding Carly (gravity feeding)
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kissy kissy outfit!!!
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PawPaw Morton holding Carly
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Right after ROP surgery
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2 months old compared to a 20oz coke bottle
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Kangaroo Care 2 months 9 days old
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Monday, February 18, 2008

A Few Steps Back

Monday, February 18, 2008

A Few Steps Back
Current mood: anxious
Category: Life

Well as you know I have this stupid rash and can't go see Carly. So I have to survive on phone calls. I just spoke with the NNP and they had to increase her streiods. For the past several days she's been desating and had an increase in oxygen needs. So they have given her the increaded dose of steriods to try to help her over this hump. They also turned her back up to 4 liters on her high flow canula. The last time she was on 3L she lasted about the same amount of time as she has now before getting too tired. They did a chest x-ray and both of her lungs stil look pretty bad from the chronic lung disease. Which I already knew about. They don't want to give her a diuretic because of her bone condition. They also said that her fontanelle is a little larger than it should be so they ordered some lab work to test her thyroid. It came back high ( I think) so they are gonna start a drug called synthroid. They ordered an ultrasound to check her thyroid glands. They suspect that she may have an extra gland. I really don't know what all this means. This was a lot for me to take in seeing as how I can be there with her. They said that her breathing has becomed distressed. So they put her in the prone position (on her tummy) and hopefully between that and the steriods and increasing her back to 4 liters on her high flow canula will make her breath easier and more comfortable. I jsut knew something wasn't right though because she's been having lots of desat episodes since Friday, which she doesn't usually have. So I hope all of this helps. It's really hard though not being able to hold her and comfort her. It seems as if someting always happens after doning so well for so long. This stupid rollercoaster ride is starting to get real old real fast. I'm gonna keep my chin up though and keep on keeping on. I know it only has to get better with time. I just don't wanna see my little girl have to suffer. I can already tell this is gonna be a pretty rough day for me. But Ryan and I are going to go on a date tonight which we haven't done in a VERY long time. So hopefully this will help some. We need some time together, though it seems hard to find the time lately. So I guess we'll take advantage of the time we have not being able to go to the hospital for a week. I'll post another update as soon as I can. Oh BTW for those of you who haven't received a weight update from me lately.....she's as of last night 3 pounds 1.2 ounces.

Saturday, February 16, 2008

Surgery Update (2/6/08)

Surgery update

Well the surgery went well. They gave each eye about 3000 shots of laser treatment. They looked at her eyes this afternoon and they seem to look ok. They will get a better look again next week. She's off the vent and doing well. We have however ran into another issue today. We were moved to yet another nursery because Carly has tested positive for MRSA. So all babies that test positive have to be in the same nursery to keep from making well babies sick.

Surgery

Surgery Tomorrow Morning!!! (2/5/08)


Well in my last blog I posted about the eye doctor finding some ROP in Carly's eyes. Well they did another eye exam today and her eye disease has progressed VERY quickly. She now has plus disease in the right eye and pre-plus disease in her left eye. They will be taking her down for surgery at 6:30 tomorrow morning. The surgery should last from 2-3 hours. After they are done she'll return back to the nicu for recovery. They will have to put her back on the ventilator and hopefully she'll come off without a problem. They doctor said she may not want to let go of it though seeing as how she held on to it for so long before. So I'm praying that she adjust well. They will give her a big dose of steriods just before the procedure though to help assist her and speed up the pace of coming off the vent. She's still have a lot of bradycardia episodes lately down to the 40's and lasting anywhere from 5-30 seconds. I spoke to the physical therapist today and she says the reason Carly is behind developmentaly ( sucking, poor muscle tone, etc) "COULD" be because of the missing corpus callosum in her brain. We knew about this while she was still in utero. She says she may be behind a little developmentaly or severely but only time will tell. And that's okay with me. I love her anyway God gives her to me! It may just be a little challenging to adapt to when she comes home with all the specialist that they'll be calling in.

Oh yeah I ment to say that without the surgery Carly has a 60% or greater chance of blindness and with the surgery it reduces to a 10-20% chance. She will however lose most or all of her peripheral vision with the surgery. But the doctor said that she souldn't notice a difference ever seeing as how she'll learn to turn her head to compensate.

Wednesday, February 13, 2008

ROP......and update

I got a phone call today from the nurse that assist the eye doctor today. They have found that Carly has stage1 ROP. They will now monitor her more closely. She will have eye exams every3-4 days as opossed to every week to 10 days. This is some thing very common in premature and very underweight babies. If it gets worse there is a laser surgery avalible to help but not correct it.

She's starting to cry OUT LOUD!!!! Well sorta. They are whimpers but more frequent! It's so dern cute. When she gets going though she uses up all of her energy and starts desating.

The big day is tomorrow.....her due date!!!!! She will then be considered term! She's doing great though. She should weigh at least 1250 grams (2 pounds 12 ounces) tonight, she was 1224 last night. This means as soon as she hits 1250 grams she gets to come off skin control temp and onto air contral. This means she can wear clothes all day no questions asked!!!! I'll be posting pics hopefully tonight of her in her first preemie onesies! Even though they are still big it's really all I have to fit her. I have a shirt to fit but only one. So she'll be wearing onesies that are too big for a while.

Her ortho doctor came by and said her leg is completly healed!!! He was concerned about her hips though and he thinks they are okay he was afraid that they weren't resting in the sockets. But he's pretty sure that they are. He wrote an order for me to take her to the Ortho clinic a week after she's discharged to be seen again. She might end up having braces to correct her legs later down the road.

She's still not sucking or swallowing but I've been massaging her gums and stroking her tounge to try and stimulate her. She does seem to bite down very breifly when I rub the very back of her bottom gums so I hope that it's improvement! Fingers crossed!!!

That's it.....just working on weaning oxygen, feeding and growing now!!! Hopefully it won't be TOO long now!