Wednesday, November 30, 2005
Sadly, I’m still sick. Yuck. I got the flu. (At least I got it before Kaitlyn comes home), but yesterday I even had a temperature. Sheesh, haven’t I had enough already?
The Doc called me this am to tell me that Kaitlyn has moved to the “Big Girl Room.” Our NICU has 2 rooms, one is for more stable babies and the babies who are closer to going home! I guess a whole bunch of new babies came in last night and they needed the room to help other little ones. She’s still in an incubator, as she can’t maintain her own temperature yet, but she’s heading in the right direction. This is great news.
And even better news, Kaitlyn took some of my milk out of her first bottle (just 5cc’s) – she’s up to 30 cc’s, so she got the rest still through the feeding tube inserted into her stomach. The saddest thing is that neither Brian nor I were there to witness the event (and of course document via camera). But I’m still very happy. Brian hasn’t gone to the NICU for 2 days also, just in case he started to come down with this bug.
Today I started feeling better (no fever), but still hacking away. Good news on the incicsion front, it is almost healed. I'm even tending it to myself (ever since Brian went back to work). It's just open a tiny little bit, a band-aid would probably cover it, but it's still oozing, some I'm still covering it with a gauze pad.
Can you believe that you’ve added to the 5,300+ views that my blog has received? That’s amazing to me, and I thank you for all of your support – it really means the world to Brian and I.
Monday, November 28, 2005
My brother Gary (who helped post here on the blog when I went into labor) came to visit his Niece for the first time this weekend and he thought she was amazing! Here's a picture of Gary and I visiting with Kaitlyn.
Kaitlyn also had her 2nd bath yesterday. She really didn't get too upset during the bath, only during the sticker removal (that hold down the leads stuck to her).
She is much more alert than in the past, it's so wonderful to visit with her when she looks back at you. What a cutie!
Unfortunately late last night I came down with a crappy cold thing, which means, very sadly, that I won't be able to go visit my own daughter until I'm better again. Hopefully it will be by this Friday, when Kaitlyn's Grandparents are coming to visit from Pennsylvania. They've never seen her yet and are so excited!
A very large, but cute Preemie outfit on Kaitlyn. This cute outfit was sent to me by a wonderful Ex-preemie mom from San Jose. She was advertising some Preemie clothes for sale, but when she heard about our story, she sent them to us for free. She hasn't worn them yet until now, as you can tell, she is still way to small to fit well, (her feet are about 3 inches from the footsies), but the nurses thought it was so cute she should wear this outfit.
Kaitlyn taking her 2nd bath while nurse and Liz attempt to remove stickies.
Kaitlyn is wide awake and actually seems to be enjoying her 2nd bath.
Mom attempting to get Kaitlyn into her "preemie" outfit - always a difficult task inside the isolette and with all her leads attached. I certainly look forward to her being in a crib....(Remember when I was looking forward to her just being off the ventilator?)
Thursday, November 24, 2005
These pictures are from the past few days....we think she's getting so cute and really looking like a baby, I guess we are "typical" parents, we can't stop taking pictures....but the nurses tell me they all keep stopping by to look at her, as she looks so different and has so much hair.
Kangaroo with her hat on. (I moved her blanket so that you could see her in the picture), but normally she is cuddled in warm blankets as she still can't maintain her body temperature. Being against my skin helps keep her warm, and it sure helps mom's spirits! This is another tiny hat that the Hospital Volunteer knit for preemies. It's so cute (and it's Christmas colors too!)
OK, this is the first time that Kaitlyn actually sucked on her pacificer for any length of time. The nurses try to get them to suck the pacifier while they are being fed through the gavage tube, so they start understanding that by sucking they get a full stomach. Kaitlyn can't keep her's in, she usually is like the Simpson's baby, where the pacifier goes in and out of her mouth (usually out). This time, the nurse put Kaitlyn's hand to hold her own pacifier. She was so cute.
This is a "preemie" diaper on Kaitlyn. Before this she was wearing "micro-preemie" diapers. She was switched to the bigger diaper becuase her stools were blowing out of the smaller ones. But, as you can see, these are still huge on her!
Am I ever thankful for my beautiful little girl!
Kaitlyn’s first Thanksgiving wasn’t very eventful, but at this point, that’s good news. Every time I see her she looks better and better. When I’m not at the hospital I miss her and can’t wait to see her. It seems her hair gets a bit blonder every day, as if she’s been out in the sun – which of course isn’t the case. And she gets a bit bigger too. But she’s still not up to 3 pounds yet.
She had another eye test this week, it also showed that her eyes were immature. I guess that’s good still, but I spoke to the doctor and he said it’s around 34-35 weeks when ROP would show up (she’s just 34 this week), so she’ll be having another eye test shortly.
I forgot to mention (people have asked) that she’s been off morphine since she got off the ventilator. If she was still sedated, she might forget to breathe. Instead, she’s been on caffeine which helps keep her breathing.
The docs have changed her feeding schedule and she’s now up to 26 cc’s! That’s only 4 cc’s short of a full ounce. She’ now eating every 3 hours instead of 2 and she continues digesting almost all of her food every time they check. Maybe (hopefully) next week she might get to try to either breast feed or nipple from a bottle for one feeding. It is likely that she won’t be able to get too much before she tires (as it’s a lot of effort to breathe and swallow at the same time).
Brian worked today, so Thanksgiving was fairly quiet for me, I spent the afternoon with my daughter though so I feel I finally have a lot to be thankful for.
We are still planning on Kaitlyn coming home on or around her due date, which is January 4, 2006. Sitting in the hospital today after holding Kaitlyn I kept thinking about when she comes home and how happy that made me feel. I used to think “if” she comes home – now I know she’s coming home. What a joyous feeling. And keep thinking of next Thanksgiving when our duaghter will be home with us and a little over one year old.
Some wonderful friends and co-workers are throwing me baby showers! It feels strange to finally feel celebratory for my pregnancy. I guess that’s a good thing, as we really aren’t prepared to have a baby at home. It was very strange going to Babies’ R Us to register for baby items along with very pregnant women, as I obviously don’t look pregnant. The scale this morning showed I weighed a bit less that before I was pregnant – I guess it’s all that breast pumping.
And, another piece of good news, I went to my doc this week and my incision is about sealed up. It’s still oozing a bit (a tiny bit) and as soon as that stops, I’ll be able to be bandage free. At this point, I clean and bandage it myself, as it’s really just a tiny little spot. It was strange giving her a hug to say “good-bye” as I’ve seen her every week since the girls were born and more often than that while I was in the hospital. My brother Gary is coming to visit his niece tomorrow for the first time. He’s flying in from Seattle.
Happy Thanksgiving to you and thank you for continuing to support us. I read all the comments here every day.
I took this picture while holding Kaitlyn today, once again the drama queen is at it again, or is she just trying to pull out her feeding tube? Her eyes are open a tiny bit.
Back in her isolette in a new outfit (it's more like a robe), the nurses like it, as it's easy on and off. Although she looks "big" in this picture, look at the next picture for comparison. She's still a bit awake after getting my milk, but rapidly falling asleep.
Here is Kaitlyn posed with her Lizard Beanie Baby. Yes, that's a tiny little Beanie Baby.
My friend Keri made this beautiful little fleece blanket that is exactly Kaitlyn size. The nurses always comment on how cute the blanket is. The blanket is a bit bigger than a shoe-box. She's fast asleep after her Thanksgiving dinner.....and mom gets to go home.
Looking at these pictures now, I want to drive right back to San Francisco to be with her!
Happy Thanksgiving to you and your family! Be sure to hug your loved ones and be thankful for all that life gives us and to send prayers to all the little angels looking down on us.
Sunday, November 20, 2005
Kaitlyn had her first bath on Saturday! She actually did quite well, it didn't bother her too much. She's still doing absolutely fantastic! After I kangarooed her on Sunday, (she slept the whole time), she was alert after being put back into her isolette. I think she was hungry. She was alert and awake for about 20 minutes, she spent the whole time being active, looking at mom, even holding my finger and pulling it towards her mouth. She also sucked on a pacificer for a bit, the longest I'd ever seen her. Here are some pictures from her first bath.
Dad took all these pictures.
Washing Katilyn's hair before the bath. I was holding her in one arm and washing her hair with the other. You can see a close-up of the nasal cannula that she is now on. The tape on her cheeks holds it on. (as well as it can, because Kaitlyn loves pulling anything off her face). In fact, in many pitcures you will not see her feeding tube in her mouth, as she also likes to pull it out. The the nurses are putting it down into her stomach with every feeding.
Kaitlyn didn't like mom and the nurse trying to pull off her sticky tapes that hold monitors in place. The nurse changed them after the bath. The tape is supposed to come off in the water, but it didn't! Kaitlyn has very sensitive skin. We still haven't heard Kaitlyn cry. You can just tell she's crying by her squished up face.
In this picture you can tell how small and "froglike" she still is.
Kaitlyn wearing her first clothes. This is a tiny preemie "onesie". Most of the preemie clothes I have for her are still too big! This was the smallest of the small and it still swims on her. Look at her clean hair, sticking straight up! She is actually looking like a baby, rather than a little plucked chicklett.
Friday, November 18, 2005
Kaitlyn is off the CPAP! When her nurse came in yesterday morning, Kaitlyn was so distressed by the CPAP that she was feisty and upset as she kept trying to pull it off. So the nurse asked the doc if she could be switched to the high-flow oxygen nasal cannula, as she was on levels around 24% (room air is 21%).
So she was switched over, and has been doing very well. When I got to the hospital yesterday, she was even wearing a little t-shirt! It swam on her, but she looked like a real baby! (instead of a little peanut). My heart just sang. It was less “work” to prepare her for holding, as she didn’t have to have a respiratory therapist come change her from the CPAP, but there are still monitors attached so I still need assistance, besides the fact that she is still so small and fragile.
I’ve held her every day now, and Brian got to Kangaroo Kaitlyn today. Brian went back to work yesterday, so he stopped by when he got off this morning, (so I wasn’t there to take pictures), but he said she did great, was alert and trying to look at him the whole time, and was holding on to his chest hair! Boy I wish I had a picture of that!
The doc told Brian that he’s ecstatic with how well Kaitlyn is doing! What fabulous news. He feels that at this point, she now has only a 20% chance of her coming home on oxygen! This is really the first good long term news that we’ve heard yet! I feel a big sense of relief and joy at this point.
When I go in later today, I get to help give her a bath! Her first bath! The nurse said about 50% of babies love it and 50% of babies hate it. We’ll see what Kaitlyn thinks.
She is up to 17 cc’s of milk every 2 hours, and is continuing to tolerate it really well. That’s over ½ an ounce!
Yesterday was a “big birthday” in the McCarthy household, Kailyn, as opposed to Kaitlyn, turned 12! Kailyn is our dog. Brian was at work, so just Kailyn and I celebrated the big event, she got a lot of dog treats.
Monday, November 14, 2005
I have a daughter. She is a alive and breathing. I am a mother! I miss her sister terribly, but I finally feel like I have a reason to feel joyous. Joy and elation fill my heart, I've suffered so much these last months and now I know it was all worth it. Look at my beautiful, amazing daughter in my arms. I am only able to hold her one time a day, as it's still a lot of effort on Kaitlyn's part, (due to sensory overload of being out of the incubator), but the good news is that she continues to handle it very well and definitely seems to like to be in my arms. Feeling her little body as she breathes against my chest is such an amazing feeling.
Brian holding Kaitlyn for the first time. It's now easier to see how small she really is in his arms.
It was so amazing how Kaitlyn liked looking up at mom. Wow, did my heart just melt right there on the spot. This is my daughter!! And she's absolutely beautiful. (the oxygen tubing is cutting into her cheek a bit). Look at all her hair and it's really turning lighter too.
The 2nd day of holding Kaitlyn. This time it was not as "rewarding" as she was still on the CPAP. After I hold her they are still putting her back on the CPAP. Hard to see the little lady. You can see now why it's especially great to hold her, as I really am getting to "see" her for the very first time without all the wires, tubes, blankets, etc.
First Kangaroo hold, Yesterday. Kaitlyn is trying to look up at me, but the angle is a bit tough for both mom and Kaitlyn to see each other. Her warm body next to mine was absolutely amazing!
Liz looking at Kaitlyn
From yesterday's visit
This picture was taken today, before "kangaroo" holding Kaitlyn. There is a lot of prep time in order for me to hold her. In this picture she had just pulled out her own feeding tube - yes, she's still strong and fiesty - but she still has the tape on her chin that normally holds the feeding tube down. No IV's any more! the amount of items attached to Kaitlyn has gone dramatically. (and make sure you see the "poor" diapering job. This was mom's doing. The diapers are still so big on her, and Kaitlyn doesn't make it and easier with her kicking and wires getting tangled in her feet).
Kaitlyn slept calmly like this for an hour, yes a whole hour. I took her little pink hat off and her blanket for this picture. Her pink hat is the same size as her Halloween orange hat that you saw Brian model a few weeks ago. She is still so very small. And I spend a lot of the time looking up at the monitors every time they alarm, making sure she is alright. They sound when her oxygen saturation is too high as well as too low. She kept sating high, so the alarm kept sounding. This means that she tolerated it very well.
Saturday, November 12, 2005
Well, it's about time! I'll post more about the moment later, but thought you might like to see a picture. And yes, that is mascara running down my cheek with my tears. Kaitlyn's eyes are wide open, she LOVED looking at mom, and handled the holding beautifully. She got off the CPAP just for the "holding", in this pic she's on the nasal cannula. She did GREAT!
Thursday, November 10, 2005
The nurses finally removed Kaitlyn’s IV today! She is up to 13 cc’s of breast milk every 2 hours (15 cc’s would be ½ an ounce). They are going to “fortify” my milk starting today which will give her more calories – so she can get some weight on her little frame.
Our freezer is about to overflow. Here is a picture from a few days ago. Each of these bottles (if filled to the bottom of the lid) holds 4 ounces of milk. The orange and white lables are "Kaitlyn's" labels for the NICU. Each one has to be labled with her name, her medical record number and the date and time that I pumped. Each preemie has a different colored label. The freezer is even fuller now, as this picture was taken a few days ago. Every day I produce about 10-13 bottles. We have to get a 2nd freezer soon (that’s on Brian’s list of things to do.) And as how "difficult" they are to produce, I'd rather throw away frozen food than my milk!
She’s continuing to do really well, she’s only had a few A & B spells (Apneas and Bradys). We haven’t gotten the results back of her adrenal gland function test yet (to check for her production of cortisone). She’s getting a shot of Epogen (sp?) 3x/week to help increase her red blood cell production.
She weighs about 2.5 pounds now, I can see her cheeks have filled out a bit more and her thighs seem a little bigger to me. It’s hard for us to really see a difference day to day.
I keep crossing my fingers that I will get to hold her soon! I heard one other little “mewing” sound from Kaitlyn yesterday, let’s just say she is still working on her cry.
Monday, November 07, 2005
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.”
Sunday, November 06, 2005
Kaitlyn's off the ventilator again!
Liz watching over Kaitlyn
A short break off the CPAP...Taken Saturday 11/5 before getting a breathing treatment. The CPAP really pushes on Kaitlyn's nose.
Another short break from the CPAP
"Mom, I hate the flash from the camera....!"
On the CPAP, Brian and I call her our little scuba diver, as the CPAP looks like a snorkel.
Well, good news finally. I guess I waited a few days this time to post just to make sure, but Kaitlyn is again off the ventilator. This time she decided herself that she had it with the tube down her throat and pulled it out herself!
Funny enough there is a another twinless twin right near Kaitlyn in the NICU that was supposed to have his tube pulled on Thursday and he pulled it out himself on wed, so Kaitlyn decided she couldn’t be left behind and pulled hers out on Thursday. We got there about an hour after it happened, and she was nice and calm and sleeping (good news to start).
Since then, her blood gas levels have been great (meaning she’s processing the CO2 out of her system really well). She’s on the CPAP again (which doesn’t breathe for her, but helps make breathing easier by keeping her lungs inflated so it’s not as hard to take a breathe. Her oxygen intake is anywhere from 29% - 45%. Room air is about 26%. And she’s breathing fairly regularly, (not all the time) but generally, nice deep breaths (still a little rapid) but the rate has been coming down. Think of yourself breathing, if you take too fast of breaths you don’t get in as much oxygen, so it’s more important for her to breathe slowly and deeply. Her rate is still fast for her still but better than on Thursday.
She’s had a lung x-ray that looked good. The docs held her feeding for the first 24 hours as to not take any effort away from breathing. (As oxygen goes to her digestive system), but she’s taking breast milk again. It started back at 2 cc’s every 4 hours, now (on Saturday) she’s at 4 cc’s every 2 hours. That’s about a tablespoon or a bit more. They will increase the amount of milk 1 cc every 12 hours until she gets to 11 cc’s every 2 hours.
She’s much calmer in general now too, even when the nurses have to do things to her. I’m crossing my fingers that I’ll actually be able to hold her in the next few days! Wow, to finally hold my daughter that was born a month ago yesterday (10/4/05).
Updates on Liz:
Remember me talking about my eyes and that I couldn’t see? Well, it’ ends up that the contacts that I received right when I was pregnant (it was a new box) were defective! Can you believe it…this whole time I’ve been on bed rest I’ve been wearing my glasses because I thought pregnancy changed my eyes, and I couldn’t leave the bed to go to the eye doc….it ends up that the box was defective. So, I’m happy to report that my vision is the exact same as before, and I’m able to see again.
I drove yesterday for the 4th time, and even went to a work function that is mandatory. Figured it would have been very hard to make up the meeting, so I went. It was a strange and surreal feeling. The few people that I saw, (I purposely came right when the meeting started) were all so wonderful and gave me big hugs and said they have been thinking about me all the time. I had to quickly leave to go home afterwards as of course I had to pump.
My wound…..Well, it is continuing to heal, Brian says, it’s definitely half the size when he started having to pack it. I of course still can’t look at it. The doc hasn’t given me an idea of how much longer it’s going to take to heal – I can’t wait, as I’m really tired of wearing maternity pants that are way too big on me. But I need something that allows for the room of the bandage and isn’t too restricting. The few maternity pants I had were summer pants (capris) and now that it’s gotten colder, I don’t really have anything to wear.
Wednesday, November 02, 2005
Liz's hand, trying to calm Kaitlyn, not sure if she is yawning or trying to cry. See her right hand...it's underneath a white blanket, sort of taped down, she constantly grabs her breathing tube and tries to yank it out. Look at all of her hair, it's been getting lighter.
Dad showing off how small Kaitlyn's hat really is
Mom holding the little beanie baby Lizard we got a few days ago, (hospital workers give them to all the preemies)
Now that she's back on my breast milk, here is a picture of her getting 2cc's (her 2nd time of getting milk in 4 days after being so sick this weekend). My breast milk is in the small syringe hanging above Kaitlyn's head. It goes into the feeding tube directly into her stomach. Not the way I imagined "breast feeding" to be. And I'm reminded of this fact every time I have to wake up in the middle of the night to pump