Report from Sunday 11.6.05
We heard Kaitlyn sort of “mew” yesterday!!!!! She was upset and obviously trying to cry….You could tell by her scrunched up face and wide-open mouth. Now that she is no longer on the vent (no longer has a tube down her throat), we have been crossing our fingers that there wasn’t any damage to her vocal cords (from being re-intubated over and over).
I heard a little “mewing” sort of sound and said to Brian, I think I heard Kaitlyn cry (it was so quiet it was hard to tell if I imagined it or not), then Brian heard it too. I can’t tell you how it brought tears to my eyes. We missed out on the newborn joy at birth of our babies crying, so this small, little sound brought absolute joy to our ears and souls. Our little Kaitlyn is alive and crying!!
Kaitlyn is still on the CPAP, and doing remarkably well (for how poorly she was doing 1 week ago). Here are some updates:
* Her oxygen and CO2 levels continue to be very good; She varies between 25% and 40% oxygen
* She is increasing her feeds every 12 hours (she's up to 8 cc's of breast milk - keep in mind that it takes 30 ccs of breast milk to get one ounce!); she is digesting the milk very well
* She has had very few Apneas (forgetting to breathe) or Bradys (dropping of heart rate) that are so common in preemies. This is VERY good news.
* She seems to like her breathing treatment she gets every 6 hours (it's like an asthma treatment)
* She is much better at being "handled" by the nurses, meaning she's not as pissed off, which means she doesn't desat as much
* She is being weaned off the cortisone, and is going to have some adrenal testing this week to see if she is able to create her own cortisone. The docs think this may be the reason for her bad week last week.
* They still want to wait awhile for me to hold her.
* I don’t know her weight off hand. She is definitely above 2 pounds though. Many people always ask me how much she weighs, thinking this is a measure of how she is doing. It actually isn’t as important as how her lungs are doing and how she tolerates feeds. It is assumed that if she is digesting her milk that she will gain weight. Whenever we call in to get an update on Kaitlyn, or the doc meets with us, they give us a lot of updates on her lungs and food digestion, but rarely give us an update on her weight (unless we ask).
* She desats when she is off the CPAP, so she definitely is being aided by the CPAP by keeping her lungs inflated so it’s easier for Kaitlyn to breathe (she doesn’t have to work as hard).
* She had her first eye exam today to check for ROP.
Here is some info on ROP: Retinopathy of prematurity (ROP) is a potentially blinding eye disorder that primarily affects premature infants weighing about 2¾ pounds (1250 grams) or less that are born before 31 weeks of gestation. The smaller a baby is at birth, the more likely that baby is to develop ROP. This disorder—which usually develops in both eyes—is one of the most common causes of visual loss in childhood and can lead to lifelong vision impairment and blindness. ROP was first diagnosed in 1942. ROP is classified in five stages, ranging from mild (stage I) to severe (stage V). To read more, This info is from: http://www.nei.nih.gov/health/rop/index.asp
The docs have told us that it is highly likely that Kaitlyn will have some form of ROP, it is just going to be a matter of which stage she has. 4 out of 5 premature babies born under 2 pounds have ROP.
In today's eye test, the results were "her eyes are premature." This means that it is too soon to tell if she has ROP. however, some ROP could show up at this point, so basically the results of this first exam are promising.
When can Kaitlyn come home?
Many of you may ask about her long term prognosis. As the docs tell us, everything is too soon to tell. Preemies usually are able to go home around their original due date, which for me was 1/4/06. We have no idea if she will be on oxygen when she comes home or if she will have any other long term effects. The docs say it is just too soon to tell. Either way, as she does have Chronic Lung Disease, we will have to be VERY aware of Kaitlyn getting any type of infection, so we will have to limit visitors once she does come home and we may well not be able to go anywhere at all for many months.
It used to be the case that babies had to weight at least 5 lbs. before they could come home...but no longer. Instead, Kaitlyn must be able to do the following before she can come home:
* Maintain her own temperature.
* Be able to breathe relatively well. (It's possible she'll come home with an apnea monitor and oxygen.)
* Be able to eat and breathe at the same time.
How old is Kaitlyn?
Preemies are given two ages: “chronological age” and “adjusted age.” The first is counted from the time the baby was born (just as we age most children). The second, is counted from the time the baby was scheduled to be born; the latter is useful when looking at developmental issues. For example, a baby whose chronological age is one year, but was born eight weeks premature, will probably have the developmental abilities of a ten month old.
Ever-present thoughts of Corinne:
Corinne is still so close in our hearts and souls. It is very difficult when I hear people say you are “lucky to have one child.”
The funeral home called the day before, letting us know her remains are ready for us to pick up. It just isn’t right that we have to pick up our daughters remains and that we only got to spend one short hour with (besides the time I spent nurturing her inside me). Because she was our prom princess, I think I thought of her more than I did Kaitlyn, because I was always sending her “healthy, healing” thoughts. To this day, I have held Corinne longer than I have held Kaitlyn (as I haven’t held her at all).
As we choose the funeral home in North Beach, they suggested we NOT come on Sunday, as the Prince Charles was going to be seeing the play Beach Blanket Babylon which is directly across the street from the funeral home. Strange to think that the Royals are so close to our daughter’s remains.
There isn’t a day that goes by without our thinking of Corinne. I still mistakenly say things like, “the babies room”, “when we bring them home,” and “when we visit our daughters in the hospital.”