Christmas pictures and more.....

Here is Kaitlyn in her Baby's First Christmas Hat, sleeping away.

Kaitlyn was "tracking" my voice with her eyes in this picture. She was sort of sleepy, and I spoke to her and she woke up, and tried to find the sound of my voice. She is wearing a very cute outfit from her Great Uncle Rick and Rainey. Rick is Brian's Uncle. Although it's a Preemie outfit, it's still big on her. This was on Christmas Eve.

Kaitlyn yawns a lot!

Mom having a successful breastfeeding attempt on Christmas Eve

Mom and Dad (aka Liz and Brian) at home on Christmas Eve


Uncle Gary talking to Kaitlyn and she sure likes the sound of his voice! She probably knows how much help he was in keeping all my blog watchers up-to-date after I delivered


A proud Uncle Gary, holding his neice for the first time

Here is Kaitlyn with a blankie snuggly from Auntie Kris. Kris is almost my step-sister (my mother's long-term boyfriend Rich's daughter). yes, it's all very confusing, and you can see why things were a bit hectic over Christmas.

Nana (Grandma) Corinne holding Kaitlyn for the first time...yes those are definitely tears in Nana's eyes. (Mom Liz takes after her mom in the tears department). We named our first born twin daughter Corinne Margaret (after both my mom and Brian's mom). We wanted to make sure our little Prom Princess had the name of our strong mothers so that she would be a fighter. I'm sure my mom Corinne had the same thoughts I always do when I hold Kaitlyn, what would Corinne Margaret have looked like.

Grandma Marcia (Mimi) holding Kaitlyn for the first time. This is my step-mother. Marcia's daughter Whitney (who lives here in the Bay Area) is due to have her 2nd child in just a few days from now. She was due the same time I was originally due

Dad trying to get Kaitlyn to nipple. Kaitlyn isn't very interested (as she often isn't). She sort of looks up at you and says, "well, what am I supposed to do with this?"


Dad holding Kaitlyn. This picture gives good perspective at how small she still is


These 2 "twin" ornaments are from Kaitlyn's NICU twin. Right across from Kaitlyn's crib is Ethyn, who was also a micro-preemie and lost his twin brother. Both Kaitlyn and Ethyn have been in the NICU for a very long time. Ethyn for even longer, he was born at 24 weeks, and is almost a month past his due date. Ethyn's parents, Jenny and Phil are the ones who made us the great Christmas crib sign. I showed up to the NICU one day and these adorable little first Christmas ornaments were right between our two "twins." We have become good friends with Phil and Jenny, Ehtyn's parents. In fact, we have spent all our holiday's together in the NICU.


Brian's mom Grandma Margaret (aka: Markie or Mame her Grandmother name) made us these incredibly beautiful ceramic plates which she brought when she was visiting Kaitlyn after Thansgiving. She had made a similar plate for Brian when he was born, which we have. These are very, very special to us.

Every time I look at Corinne's I cry, as it's just so beautiful that she's peacefully sleeping. The plates are hanging in Kaitlyn's nursery.


My mom (Nana Corinne) found us these 2 beautiful porcelean angel ornaments which she searched and searched for. She had Kaitlyn and Corinne Margarets name painted on them. When I opened these on Christmas, both my mom and I sobbed.

This incredibly beautiful touching night-light was sent to me from Leanne and Andy from New Orleans. If you recall reading my blog during Hurricane Katrina, I mentioned I have a lot of family in New Orleans that were all displaced by the Hurricane. This porclean night-light shows a beautiful angel over the bed-side of a baby girl, with her mother looking on. I of course cried when I opened the box to this touching gift. It couldn't have been more fitting. ........ Leanne and Andy are my ex-inlaws. But I have remained very close with my New Orleans family now (as has Brian) and we consider them Grandparents too. Kaitlyn and Corinne are indeed lucky girls to be surrounded by so many family members and friends.

Ok, I haven't posted any pictures of Corinne, but maybe with all the touching gifts above, I thought I'd post my most favorite picture. After Corinne had passed, the wonderful nurses at CPMC put Corinne in Kaitlyn's isolette. In it, Kaitlyn is holding Corinne's hand. I am still planning on posting more pictures of Corinne, on a memorial type page. I thought with the holidays, you all might like to see this touching picture.

Christmas has come and gone....

12/29/05

Christmas has come and gone….It was nice, crazy hectic and sad. I’ve been really sad the last few days…knowing that we should have had a happy Christmas with my 2 little twin girls at home with me. My due date is fast approaching when I was due, but with twins, I realistically would have delivered mid-December.

I came across this wonderfully sweet poem from one of my prom-list friends. I think the holidays have made it really hit home that I have only one child, who is sick. Both of my children should have been home with me for Christmas, instead one is in the hospital and the other is in heaven.

Christmas with Jesus

I see countless Christmas trees around the world below
With tiny lights like heaven's stars, reflecting on the snow.
The sight is just spectacular, so please wipe away that tear,
And be glad I’m spending Christmas with Jesus Christ this year.

I hear many Christmas songs that people hold so dear,
But their music simply can't compare with the choir that sings up here.
I have no words to tell you of the joy their voices bring,
For it is beyond description to hear the angels sing.

I know how much you miss me; I see the pain inside your heart,
But I am not so far away: we really aren't apart.
So be happy for me, my dear ones; you know I hold you dear,
And be glad I'm spending Christmas with Jesus Christ this year.

I send you each some special gifts, from my Heavenly Father above,
I give you precious memories, and my undying love.
And your life, a gift more precious than even purest gold,
I ask for you to live it; don’t let your dreams all go untold.

Please love each other, as I would want you to;
I can't even count the blessings life has in store for you.
So have a Merry Christmas and wipe away that tear.
Live so that we’ll all be spending Christmas with Jesus Christ one year.

-Based on a poem by an unknown author, and revised by a Prom Mom

Every time I read this poem I start to cry.

Brian had to work on Thanksgiving, Christmas and New Years Eve this year. He would have been off for the holidays, assuming the girls were home with us. Kaitlyn and I spent Thanksgiving together alone in the hospital; for Christmas my family were all up visiting, but things were very hectic, trying to fit in everyone’s plans and trying to see Kaitlyn during her feeding schedule, which is every 4 hours. The NICU only allows 2 people in at a time, so things were difficult. By the time everyone left, I felt lacking in spending time with my daughter, so I went for 10 hours yesterday.

It was wonderful for so many of my family members to see Kaitlyn for the first time, or for the first time since she was first born. My mom, brother, step-mother and step-sister all got to hold her for the first time. That was some special moments.

During my visit yesterday, Kaitlyn received her first set of Immunization shots, it was so sad to see her upset with the shots, but she did fairly well. At her next feeding 4 hours later, however, I’ve never seen her so upset. She must have been sore from the shots. She cried and cried, and her heart rate raced above 200. Of course absolutely no sound came out when she cried, so I don’t know what broke my heart more, her pain and suffering or the fact that she has no voice.

Yesterday I was really sad. I'm not sure why yesterday more than other days. Maybe its because I started the day by reading the Christmas poem above. Then my first visit with Kaitlyn didn't go well, there were not any rocking chairs available, so I had to hold her in an office chair (not very comfortable). She didn't wake up enough to nurse. Then when i went to the pump room, they had it all torn apart, as they are going to put a new baby in there (so I had to pump sitting in a room in disarray also sitting in an office chair.). Then I went to walk down the street when Kaitlyn was sleeping to get some coffee. I saw no less than 7 babies in strollers....I sat in Starbucks and cried in my coffee. My surviving daughter is in the hospital....how I wished I could have a normal motherhood experience by walking my daughter and going to coffee. Instead I have to time my visits with her around her feedings so I can hope and pray she'll be awake enough to open her eyes.

Medical updates on Kaitlyn

Eyes: Good news, the Doc examined Kaitlyn again earlier this week and said he is very pleased with the progress. One eye is completely cured of ROP, and the other is doing very well. So that’s very good news.

Lungs: She is still requiring oxygen. At this point, it’s looking more likely that she’ll have to come home on oxygen. Her CLD (Chronic Lung Disease) is definitely evident (remember that’s its caused from her being on a ventilator for so long). But if it wasn’t for the ventilator, Kaitlyn wouldn’t be here with us today.

Long term prognosis for her lungs still isn’t known. She will hopefully most likely out-grow it in 3-5 years. She will likely have asthma, and be very susceptible to infections. If she comes home on oxygen, we don’t know how long she will need to be on it. Again, hopefully just through the winter months.

She will also have to have a shot called RSV every month for this winter and the next. RSV is a very bad respitory infection that could be deadly if Kaitlyn can get it. The shots cost $1,000 each and she'll need them monthly. (our insurance should cover it)

All of this means that we will have to be very limited on visitors and outings with Kaitlyn. We have to keep her in controlled environments where people religiously wash their hands and ensure that no one is sick around her. We were supposed to go to my cousin’s wedding in Minnesota in May, but it’s looking likely now that we will not be able to go.

Feeding: Kaitlyn still isn’t able to feed all of her milk on her own. This means that she more often than not is still gavaged…fed the milk through a tube that is inserted through her mouth into her stomach. She HATES being gavaged. It makes her gag every time and looks utterly miserable. It just breaks my heart. She is up to 60 cc’s of milk every 4 hours (that’s 2 ounces). When I’m in she sometimes breast feeds. She has to be awake in order to breast feed (or nipple my milk from a bottle). If she’s not awake – forget it. She’s just not interested. When she is wide awake she actually latches on and nurses from mom quite well. She and mom both enjoy it a lot. This has been about 6 times now total. Sad. My daughters were born almost 3 months ago and I’ve breast fed a total of 6 times. At least it has gone well when she’s been up for it.

Kaitlyn will not be able to come home until she can nipple all of her feeds. She now only occasionally will take 10-20 cc’s of a bottle, then has to be gavaged the rest. She just gets too tired, which means that her chronic lung disease is definitely still evident and causing the problem. Her lungs have to work the equivalent of running a marathon each time she eats.

Kaitlyn does now weigh over 5 pounds.

Crying/Vocal Cords:
Well, Kaitlyn still doesn’t make any sound when she cries. It’s very evident when she cries, she even has tears, but her little mouth opens up and all you hear is air coming in and out with her gasps.

They don’t know what the problem is, but the cause is from one of 2 things: 1) A nerve was nicked when she had her PDA Heart surgery back when she was less than a week old. The surgery was to close her PDA valve in her heart – which often doesn’t close on it’s own in premature infants. Or 2) it could be from being intubated/extubated (ventilator) so many times that there is damage to her vocal cords.

Next week after the holidays are over the Pulmonary Doc is going to due a bronchoscope procedure to look down and see what is going on. They are also concerned that this is affecting her ability to eat. As of now, they have not told us much more than they will check to see what is going on. We don’t know any long-term prognosis yet. Supposedly the scope is fairly large so she will have to be sedated again. I’m afraid of that, as the last time she was sedated it took her over a week to become more alert again.

Developmental delays:
Kaitlyn will likely have development delays due to being born so early. Luckly she never had a brain bleed. So only time will tell. Her development growth will always be based on her due date (1/4/06) and not the date she was born. This means when docs compare with other babies for sitting up, talking, crawling, standing, etc. it is always based on her Gestational Age (1/4/06).

Coming Home:
In that so many of you ask when Kaitlyn will be able to come home, I thought I’d address that question. Her estimated coming home date has always been her due date (1/4/06). As of this time she definitely WON'T be coming home by the 4th.

Kaitlyn has to be able to take all of her feeds on her own – she is far from doing this now. If she is able to take all of her feeds but still needs oxygen, she would be released with oxygen.

She will also need to go a full 7 days without any A’s or B’s….
Apneas (A’s) are when she desats on her oxygen levels
Bradys (B’s) are when her heart rate drops.
She is still having A’s and B’s now, as all preemies do, but they usually get better as preemies near their due date.

My due date is 1/4/06.

This date is going to be very hard for me. I think this lead up time is already hard. Knowing that with twins they would have been considered full-term at 38 weeks, which was right before Christmas. They should already both be here with us at home. Now only Corinne is home with us, waiting in her sister Kaitlyn's room so that she can continue to look down and protect her.

I'm not normally so down, sorry for the sad post today.

I’ll post some more pictures soon.

Kaitlyn's crib sign

Isn't this the cutest. Kaitlyn's NICU lost twin's parents made this for us. We have become friends with another micro-preemie babies parents, as their situation is similar to ours, they also lost their babie's twin brother and their son has been very sick. They are sadly well past their due date in terms of going home. We have both been there for so long already.

Their son's dad makes the greatest crib signs for his son's bed, and he made this super cute one for Kaitlyn.

The eye doc on monday said once again that Kaitlyn's left eye looks great from the surgery but it is still too soon to tell for the right. He's coming again today.

Kaitlyn also had a "swollow" test yesterday. The docs are concerneed because she really isn't feeding (nippling from a bottle) very well (meaning there is no way she'll be coming home early). The good news is that the swollow test showed that she is not aspirating milk into her lungs (very good thing) and has very little reflux. (preemies often get reflux).

The bad news is that the xray showed that she still does have substantial Chronic Lung Disease and is why she is so dependent upon oxygen still. Time should heal her lungs, it could be months or it could be years.

Great visit today with Kaitlyn....

What a great visit mom had with Kaitlyn today! After drivng through a torrential rain/wind storm, I made it to the hospital. (It rained 6 inches of rain in 24 hours!)

Today I got to the hospital more than 2 hours before Kaitlyn was to feed, so I just held her close as she slept. Finally, as her feeding time got close, she actually woke up! And......breast fed! She did really well, (but just for 7 minutes or so, then she got tuckered out).

Here are some great pictures where you can actually see Kaitlyn awake. After eating, she did have a Brady (heart rate drop).

I did have some sadness though. There was a set of twins in the NICU right behind me as I held Kaitlyn sleeping for those few hours. The nurse was bundling them together, and I coudln't help overhear and think of how I wished for Kaitlyn's sake that she could feel the warmth of her sister next to her. I started crying silent tears and one slipped off my cheek and fell onto my daughter. As I stared down at my peaceful, sleeping girl, looking at how much she has changed, I couldn't help but wonder what her angel sister Corinne would look like now.

After sleeping for a few hours, I put Kaitlyn back into her crib to change her diaper, and surpirse, surpirse, she actually woke up. I haven't seen her this awake since before I was sick. This was a big treat for me. This picture was taken by her sweet nurse Kerry after taking her out of her crib again just before breasfeeding.

Kaitlyn is awake! Her face is all red, that happens when she stretches. This was after breastfeeding.

Hi Mom, it's nice to see you! Thanks for letting me drink some milk directly from you. And I say to Kaitlyn, you can drink from me anytime you want, it's much more enjoyable than the breast pump!

OK, here are some pictures from home:

This picture of wild turkeys was taken in front of out house the day of our shower.

Our dog kailan (yes, she's still sick) has taken to using our previous home-owners cat-door (we don't have a cat) to check out what's going on outside the front door.

Christmas Kailan saying "Get better soon and come home Kaitlyn!"

Eye Doctor Update

Well, Kaitlyn's eye doc saw her on Friday, and he said that one eye looked improved greatly from the surgery and that the other was too soon to tell.

Here are some new pictures of my little one.

Kaitlyn was asleep almost the entire visit with her today, but somehow, we were able to capture a rare moment of open eyes.

Taken today. She actually finally has a little "meat" on her thighs

This is a picture of Kaitlyn's plastic crib now that she's out of her isolette. These are the typical beds that newborns are put in.

A close up in black and white.

A message and stuffed cuddly rabbit that was left for Kaitlyn from her cousin Charlotte (and Aunt Whitney).
A beanie baby next to Kaitlyn so you can see that she is still small, but getting bigger.
A proud mamma looking at her baby girl

Frustrating Day

Here’s my frustrating day today:

12:30 am – pump & sleep
6:00 am – pump & sleep
9:30 am – wake-up again, pump & shower & call vets office to get our dog Kailan in – she’s really sick
10:45 – drive to city (25 miles) to see dermatologist as I still have a breast problem which hasn’t cleared up
11:30 – wait in docs office
12:00 – drive back home (25 miles)
12:30 - pump
2:00 – take our dog Kailan to vet. Get frustrated when he wants to do $1,000 of lab work. She has bad diarrhea which has gone on for a few weeks now and is loosing a lot of weight. I’m so worried about her. Because I had to get her to the vet, when I was in the city I didn’t have time to visit Kaitlyn in the hospital.
3:00 go to pharmacy to pick up prescription from my doc visit this morning
4:00 Try to get Kailan to take her pill (to stop the diarrhea), but she has no interest in eating anything, this takes me 30 minutes to finally get it down her.
4:30 pump
5:00 Finally eat. (note that I have not mentioned EAT during any of this time-line. I’m supposed to be eating at least 500 calories EXTRA a day due to pumping).
5:45 leave to drive back to the city (20 miles) to go to the hospital to make it for Kaitlyn’s 7:0o feeding
6:45 visit and feed Kaitlyn (no breast feeding due to the new medication I’m putting on).
8:45 pump at the hospital
9:30 drive home (20 miles)
10:00 have dinner
12:00 am pump

And I’m supposed to be going back to work? When in the world am I supposed to work?

At least Kaitlyn was awake this time during my visit….she took some of her bottle (20 cc’s), then had to be gavaged the rest (23 cc’s). It was great to have her look up at me with her eyes open! At least that was a wonderful part of my day. Welcome to the busy life of a mother!

Kaitlyn is 10 weeks old

12/14/05

I took this picture today, Look at my little bunny-girl. She is soo beautiful. She is starting to "fill-out" her preemie diapers finally!

Today Kaitlyn is 37 weeks Gestational Age. That means that I would be 37 weeks pregnant. (Remember when I used to count down every Wednesday?) I delivered the girls when I was one day shy of 27 weeks pregnant, and I PROMed (my water broke) when I was 17 weeks pregnant.

Well, Kaitlyn had a follow-up eye exam on Monday, but all the Eye Doc said was, “Well, her ROP hasn’t gotten worse….” Basically, it’s too soon to tell whether the surgery was effective or not. He will examine them again on Friday. The surgery is to stop her retinas from detaching from her eyes (which causes blindness). Either way, she’ll have a 60% chance of wearing eye glasses.

Here is a great article on ROP which mentions Kaitlyn’s eye Doctor, Dr. Good. We’ve been told that Dr. Good is one of the, if not the top researcher for ROP in the country.

Her recovery post surgery unfortunately seems to have stepped her backwards a bit. Finally yesterday she was taken off the high-flow nasal cannula again (she was off it and doing well before the surgery). She has been doing well on the regular cannula, but not great…meaning she is still having A’s (forgetting to breathe) and B’s (drop in heart rate).

Additionally, she is still very tired. She is not waking up to feed, nor showing a whole lot of interest in “nippling.” That means either with the bottle or with mom. Her first attempt at breast-feeding (on Monday) was actually fairly good, where she did latch on take some milk, but since then she has been too tired and not interested. If she isn’t able to nipple her feeds (rather than the milk be placed into her stomach via a feeding tube) she can’t come home. She has to be able to drink her own milk.

This was Kaitlyn's first attempt at breast-feeding. I think she's a bit confused (and tired) as to what she's supposed to do with mom's breast. It does NOT go in her ear! The next time she tried, she had a little better luck.

Today she is 37 weeks Gestational Age (that means I would be 37 weeks pregnant), her Official Due date is 3 weeks away – when she would be “zero”. Newborns naturally can suck, swallow and breathe all on their own, so it’s hoped that Kaitlyn is going to show more interest in being able to nipple. She was doing fairly well with it before the surgery, but now seems to be starting over. She also is having A’s and B’s while she’s feeding. In order for her to come home she also has to go a full 7 days without any A’s and B’s.

Recap of our fantastic shower

Our fabulous friends (Keri and Lucy) and family (Whitney & Derek and Ashley & Mark) threw us an amazing party last Sunday. It was at our house, so we had to get the house and nursery ready…We still had boxes from our July move, as I’d been on bed-rest during the move to our new house. And our nursery was being used as a storage room for the remaining boxes and items. So in just a short 2 week time-frame (with the help of Brian’s mom and dad) we finished the nursery and got the house ready to entertain. It was exhausting; I needed days just to recover from all the festivities.

Our nursery is painted light green, we added a chair rail, so it is white below the chair rail. It's a bit of a mess right now, with all the great new gifts we received at the shower!

If you can believe it, I purchaed all of this furniture used from Craig's List. All from different places in the Bay Area.

The party was so much fun. It was great to see so many of our great friends who had never seen our new house nor seen us since July when everything went bad with my pregnancy. Because it was more of a party than a shower, and because we had a lot of fireman in attendance, we of course had to have a pony keg of beer. The men hung out outside (it was chilly) and drank beer and helped with the BBQ, while the girls were inside opening presents. We received so many wonderful gifts for Kaitlyn. Everyone had so many nice things to say about what we’ve been through and that they can’t wait for Kaitlyn to come home so they can meet her. What a lucky daughter we have, for we are blessed with some amazing friends and family.

I have to give a special thanks to my best friend Keri, who did so much food prep and help with the shower, I just can’t thank her enough for all the love she has shown me since we met in college in Santa Barbara.

Thank you everyone for making the day so much fun and for all of your thoughtful and generous gifts for our beautiful daughter.

Liz at the party

Liz, Brian and Brian's cousin's Reid and Whitney

The firemen outside by the keg while the presents were being opened.

Brian during the party

Still sleeping...

Kaitlyn is still very sleepy from the surgery....Here's a new picture...

Day post eye surgery

12/9/05
Day Post ROP Surgery

Well, Kaitlyn came through the surgery fine, although she is still sedated. The anesthesia she received was supposed to be fast acting, but it seems to still be in her system. The Doc said that sometimes this happens, because the babies are so little. She was doing so well last week, and now she has taken a few steps back, breathing wise, but hopefully she will be better by tomorrow. She's back on the high-flow nasal cannula at 2%. She had been off it for over a week, the doc feels that it's the fact that she's still sedated that's keeping her having breathing issues. She's had quite a few A's and B's. (Apneas (forgetting to breathe) and Bradys (reduced heart rate).

The Eye Doc said that the surgery went well. It's about 1.5 hour procedure, where he shoots 1,000's of laser bursts into each eye. Thankfully, Kaitlyn didn't need to go under a General Anesthesia (where she would have to be intubated again). He said he won't be able to determine if it worked or not for about 1.5 weeks. He will exam her again on Monday, but said he likely won't be able to see results that quickly

The good news is that I was able to visit and hold Kaitlyn finally today! This Sunday would have been 2 weeks that I hadn't seen her, so it was a huge relief. Of course I had tears to see and hold my daughter again. She had grown so much! She hit 4 pounds today, she looked so different! She has little chubby cheeks and thighs. Her eyes were swollen (and closed) the whole time I held her, as she was sleeping.

If you are a parent, can you even imagine not being with your new-born child for 2 weeks before they are even 3 months old? I know of new mother's who have trouble leaving their new-born for an evening, and I couldn't see my daugther for almost 2 weeks!

Oh, and more good news! Kaitlyn has graduated to a "Big Girl Bed!" This means she is no longer in an isolette and can maintain her own temperature better. This should mean that it will be a lot easier to hold her whenever we want to without nurse assistance (when she recovers from surgery completely.)

It felt like I was in a time vacuum when I was there, HOURS flew by, and before I knew it I had to go back to the pump room again. I held my daughter in my arms, and stared down at her. It was like I had been gone a lifetime, I missed her so much. The tears were rolling down my cheeks.

Hopefully tomorrow she will be more alert so that I can either bottle feed (or possibly breast feed?). Today she was just too sleepy and was gavage fed (feeding tube). She did try to cry a bit, but still no noise has escaped her tiny little self. When she cries, her fact scrunches up and it's obvious she's crying, but all you hear is little gasps of air, instead of crying noises. Brian and I keep asking the doc about her lack of making noise, but the Doc said she still isn't concerned. It makes us worried, as other babies her size and age cry.

The good news of being home for close to two weeks was that we finally were able to work on Kaitlyn's nursery. Kaitlyn's grandparents (Brian's parents) where here and helped immensely. We painted the room, put in a chair-rail, sanded a dresser and put the crib together. It's almost finished, and it is so wonderful to feel that I am more ready to have our daughter come home.

It made me somewhat sad too, as most pregnant women are able to "nest" and get their nursery ready months in advance. Where I was on bed rest and also didn't know if I would be bringing babies home with me. It's sad to see only one crib in the room, but it is a room done with a lot of love and I know that Corinne's spirit is there, ready to continue protecting Kaitlyn.

We also felt rushed to get the nursery ready, as our friends and family are throwing us a shower this Sunday. It also prompted me to unpack the final boxes from moving (remember, we moved when I was on bedrest, so I did a lot of the unpacking since I delivered my twins.) We are so excited ! Finally a reason to celebrate!

These pictures were taken by Markie, my Mother-in-Law during her visits with Kaitlyn.

Grandma Markie holding Kaitlyn's little hands

Dad gazing adoringly at his daughter.

Hi everyone! Look at all my hair.

Gradma Markie McCarthy holding her 1st grandchild for the first time.

Dad bottle feeding Kaitlyn for the first time

Kaitlyn's not a big fan of the flash - ever the drama queen, it's hard being the center of so much attention and love.

What a beautiful girl

Bad news, Kaitlyn has ROP

Well, today we found out that Kaitlyn does indeed have level 3 ROP (level 5 is the worst)

Read below for info on ROP:
http://www.tsbvi.edu/Outreach/seehear/winter98/rop.htm

A disease that occurs in some premature babies, Retinopathy of Prematurity (ROP), also known as Retrolental Fibroplasia, is the growth of abnormal blood vessels in the retina that generally begins during the first few days of life and may progress rapidly to blindness over a period of weeks. This happens because the eye is rapidly developing during gestational weeks 28-40. The blood supply to the retina starts at the optic nerve at about 16 weeks and blood vessels grow out from there toward the edges of the retina until the time of birth. When a baby is born prematurely, this normal vessel growth stops and new abnormal vessels begin to grow. Over time this vessel growth produces a fibrous scar tissue which attaches to the retina and the vitreous gel that gives the eyeball its shape. This ring may extend 360 degrees around the inside of the eye. If enough scar tissue forms, it can begin to pull the retina, detaching it, and, in some cases,causing blindness.

Not all babies who are premature will have ROP. Many of the babies who are born with ROP will improve spontaneously. However, since ROP is "responsible for more blindness among children in this country than all other causes combined" (Watson, 1997), it is important that premature babies are screened for ROP.

Although there has been a correlation made between premies who receive high levels of oxygen and ROP, there appear to be a variety of factors that may account for development of ROP. These include, in addition to birth weightKaitly was very low weight) and gestational age (K was very early 27 weeks): elevated blood carbon dioxide levels (K had this), anemia (K had this), blood transfusions (K had many transfusuions), intraventricular hemorrhage (K did not have this), respiratory distress syndrome(K has this - Chronic Lung disease), chronic hypoxia in utero, multiple spells of apnea or bradycardia, mechanical ventilation(K was on a vent for 1 month), and seizures. (Ophthalmology Associates Homepage, 1997) There are some who feel that exposure to bright fluorescent lighting in hospitals contributes to the development of ROP (Prevent Blindness in Premature Babies, 1997), but to date this has not been proven and many ophthalmologists strongly disagree with this theory (Ophthalmology Associates Homepage, 1997). The current thinking is that probably it is a combination of factors, some occurring in utero and some occurring after the baby is born, that lead to this outcome.

Kaitlyn will be having eye surgery tomorow morning. Her ROP was just discovered today. The feeling is to try to treat it as soon as possible.

This, on top of the fact that I haven't been able to see her for 1.5 weeks is killing me! She's 2 ounces shy of 4 pounds, I haven't seen her since she just turned 3 pounds. She's feeding from the bottle more often now (about 2-3 times a day) and is actually taking almost the whole bottle. She's up to 33 cc's of milk, still every 3 hours.

I still have a cough, that's why I can't go see her.

Send us your prayers and wishes for her surgery to go well tomororw morning (12/8) at 9am.

Mom misses Kaitlyn incredibly....

Sunday 12/4/05

Well, I’m still sick. I have a terrible cough, but today I think it started improving. But a cough is not a good thing to take to the NICU. It’s been a week today! How can it be possible that I am a new mother and have not been able to see my own daughter for a whole week. It’s just killing me emotionally. But I know it’s the best thing for her (without a question), but it’s hard! Pumping has been especially difficult because I feel so crappy.

Today, as I said, I started feeling a bit better, and even went to a neighbors Christmas party, which has been only the 2nd time I’ve dressed up since my fateful July 26th. It felt strange, but nice to socialize.

Last night Brian and my mother-in-law visited Kaitlyn and they were able to bottle feed her again, this time she took in 15 cc’s (1/2 of her feed). They took some pictures, so once I get them I’ll post them.

If you can believe it, Kaitlyn is up to 3 pounds 7 ounces….that means she’s gained almost ½ a pound since I last saw her (which is a lot in a week)…I’m probably not going to recognize her. It took about 1.5 months to gain 1 pound, so this is a lot in about 2 weeks! I guess she really likes my milk finally! Good thing the hospital had a lot stored up already.

Today they tried switching Kaitlyn from the high-flow oxygen to the regular flow nasal cannula oxygen, but she wasn’t able to handle it very well (her oxygen saturation went down to 50%), so they switched her back to the high-flow….but she’s only at 1 liter of pressure, so hopefully soon they will try to switch her again.

That’s all I have to report for now….Hope I’ll get better soon so I can visit and hold and breast feed my daughter for the first time!

Kaitlyn moves to the Big Girl Room and drinks out her first bottle!

Wednesday 11/30/05

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.

Kaitlyn is 3 pounds!

Kaitlyn has finally hit the big 3 pound marker and she's up to 30 cc's every 3 hours (yes, that's an ounce!). She hit 3 pounds a few days ago (I've been too busy to post), and she's now about 3 pounds 2 ounces!

She is still on the "high-flow" nasal cannula, but she is being slowly weaned, she used to be at 5% pressure, but she's now at 3%. After she is weaned to 2% and tolerates it well, she'll be switched to the regular nasal cannula, which is a very good thing! That means that there isn't the oxygen isn't pressured into her, it would just flow.

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!

Uncle Gary visiting with his Niece for the first time. Our NICU bed is back in a corner, which makes things a little tight for visiting.

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?)