Back to the Main NICU

It's not bad news, it's just that our NICU is low on preemies right now, so they didn't have enough babies in the smaller NICU room (where Kaitlyn has been for over a month now), which means we had to go back to the main NICU. I hate being there, as it is so much louder and busier than our little area.

Kaitlyn is still being her finicky self, eating full bottles only on occasion.

Kaitlyn still doesn't cry: Here's what I found on the internet regarding her paralyzed vocal cord:

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When Kaitlyn breathes, she often makes sort of low wheezing sounds, but it is most likely caused from her one paralyzed cord, as the air goes in and out over it.

My friend Bernadette from Ventura came to visit Kaitlyn on Sunday. I didn't have my ditital camera with me unfortunately, so no pictures. I hadn't seen Bern in 4 years! Bern is also a new mommie to a 1 year old daughter.

Here are a few new pictures:

Mom holding Kaitlyn tight yesterday

Yes, I did get a hair cut , everyone comments that Kaitlyn looks like me, I personally think she looks more like Brian, but she definitely has my coloring. I'm not going to miss all those monitors behind me.

When I showed up one day, Kaitlyn's nurse had propped up her Lizard, very cute.

The nurses love to comment on how pink Kaitlyn is, not only her vast array of preemie clothes, but how "pink" she is! Good and healthy looking. Sooooo different from when she was first born. She's wearing her mittens to keep her hands away from her NG tube.

"I want to come home!"

This is a picture of Kaitlyn's NICU twin. Little Ethyn (well, not so little any more, he's almost 10 pounds!) has had even a longer NICU stay than Kaitlyn. We've become good friends with Ethyn's parents, Jenny and Phil. They lost Ethyn's twin brother. I like to say that Ethyn and Katilyn are each other's twins now, and jokingly say that they look exactly alike! (Interesting that we both spelled our babies names with a "Y"). Ethyn's and Kaitlyn's cribs were separated by a low wall (in the smaller NICU), Jenny and I would sit in gliders holding our babies , we would lean back to see beyond the wall to chat with one another. Life in the NICU. Currentlly Ethyn and Kaitlyn are the 2 long-timers in the NICU. The entire NICU staff cheers for our babies to go home.

2 precious emails from my fellow PROM moms

Some PROM thoughts today:

Just as a reminder PROM stands for Pre-mature Rupture of Membranes. That's what happened to Corinne's amniotic sac (my water broke) when I had an amnio at 17 weeks.

I just read 2 emails from my fellow PROM moms (I am a member of an on-line support mailing list for PROM moms) that I found really touching. Here is a link to that support group:
http://www.kanalen.org/prom/ I hope that they don't mind my posting the comments here:

The first is from a mom whose child survived a very early prom (13 weeks) to another PROM mom giving her support for her trying bed-rest time (All the Doctors ever tell PROM moms is doom-and-gloom, and here is a child that is now going on 3!):

"You do so much everyday when you lay down one more minute, when you drink one more swallow of water, when you ask someone to bring you something so you don't have to get up. I have been a part of this list since 2002 and in all that time, win, lose or draw; I have never heard of a single mom regretting a moment spent on bed rest or the effort each put forth.

We all worry, we all pray, we all cry. We whine and we fuss and we keep trying. It's all we can do. Just know that miracles do happen, the fact is God chooses us for a reason. I don't know why, but these lives that we struggle so to carry, rejoice so when we bring them home and grieve so hard for when we lose, God entrusts to a few special moms. It is a heavy load to carry whatever the outcome, but He watches over us and trusts us to do what we can. Have faith that every effort you make is worth it. We are all here for you. If you ever want to talk, you can email me and I will give you a call. In the meantime, my prayers and thoughts are with you."

Here is another touching comment from a PROM Grandmother whos beautiful grandaughter survived the PROM but then was lost to a bad infection a week later. Grandmothers just aren't thought of often when one looses a child.

We are so lucky to have 3 Grandmothers! We named our beautiful daughter Corinne Margaretafter my mother, Corinne, and Margaret, Brian's mother. We wanted her to have the strongest names possible so that she would be able to survive. Sadly, her lungs just weren't strong enough. Here's to our daughters' Grandmothers:

"Being the grandma in a situation like this entails more than most people realize. Not only do I grieve the death of my grandchildren, I also feel such terrible pain for my own daughter. Watching your child hold her own baby as that child is dying, and not being able to do
anything to "fix it" is the most helpless feeling I have ever had in my entire life. It is horrible to watch your own child hurt so badly and not be able to help. So losing a grandchild is a double pain in many ways.

I wanted this to be like a Christmas I remember from when Chelle was a very little girl. She had a favorite baby doll that she loved dearly, and it had broken. She wanted us to fix it and make it better SO BADLY! It was beyond hope and couldn't be fixed, so we asked Santa to fix the baby. She laid it tenderly under the Christmas tree all wrapped in its blanket, and you should have seen her face the next morning when she saw that Santa had "fixed" her baby good as new. I was so happy that day.

That image was in my mind that morning as I sat by watching Ellora die. I wanted to step in and DO something, anything, to "fix" Ellora and make her well, and take Chelle's tears away. But, of course, I couldn't... A parent is supposed to be able to help, and not let their child hurt...." Kathy

Here is a link to Kathy's blog:
http://www.homeschoolblogger.com/iluvtheland

The women of the PROM list have been so supportive through all that I've been through. I believe that if I would have listened to the doom-and-gloom of the doctors I wouldn't have my beautiful daughter with me today. I have to thank the PROM women for lending me their support in a terrible situation; just knowing that they had been through the same thing and that I was doing everything I could for my daughters helped me stay in bed day after day. There isn't a day that goes by that I don't wish Corinne had beaten the statistics, but I do know she hung in long enough so that her sister would have a chance and I know she is looking down on her sister and protecting her to make sure she comes home to us.

Well, on that note, I'm off to visit my beautiful one at the hospital....

Kaitlyn is 6 Pounds, It Must be My Milk!!

Well, Kaitlyn has hit the 6 pound mark! Hard to believe that my scrawnly little thing is now 6 pounds! And as of today, she's been moved into an actual crib (no longer the little plastic newborn crib). I'm going to bring a mobile in for her. She's now awake and alert (although I was there for 6 hours yesterday and she wasn't alert and awake until AFTER I left). This way she'll have somethin to look at in her crib rather than just laying there. It breaks my heart thant I can't be there every time she's alert. I want her to come home!!

I keep telling my little girl that if she only eats all her milk she can come (but she's not listening to me) :) I guess that starts early.

Some feeds she will now take her whole bottle (50 cc's) but then the next feed she may never wake up....so it's still a waiting game - on HER schedule!

Ok, just so you understand what I've been doing for the last 3 months, here's a picture of our new 6 foot tall freezer! Yes, it's almost entirely full of my milk! My hard work 6-7 times a day, every day. I don't have much of a life away from my pump.

My biggest fear is a power outage! I think I would have an emotional break-down if that should happen.

I've figured out approx just how much milk this is:

There are 14 bottles in each zip lock bag.

The bottles can hold up to 4 ounces (but I'd say they are each filled to 3 ounces as an average).

14 bottles each bag

7 rows of bags
2 rows on each shelf
4 shelves (I've already almost filled up 1/2 the 5th shelf)
apporx 3 ounces per bottle

OK, that's over 2,300 OUNCES of my milk!!!! Wow. I feel like a cow. (Brian calls me his "Cash Cow" as Breast milk is VERY expensive to buy, over $4.00 an ounce - if I could/wanted to sell it (it's normally donated), that would be $10,000!)

You may ask why??? Well, until she comes home and we see how we can work out a breast feeding schedule along with my work and how she does, I don't want to donate any of my milk just yet. (I don't want to have to pump for ever, and with so much stored up I could start reducing pumping/breast feeding. As I do have to go back to work, this way Brian can feed her with my milk when I'm not around). I didn't want to make any cutbacks on my production until she's home so I can actually try to breast feed her.

K and K updates

1/19/06
Kaitlyn Update

I was able to spend a lot of time with Kaitlyn the last few days, holding her and trying to feed her. I could just sit and stare at her for hours. I love watching her sleep. She smells so wonderful. I would give anyting to be able to do this from the comfort of my own home in her nursery. Come home Kaitlyn!!!

Kaitlyn was changed yesterday to feeds every 3 hours (instead of 4) with 50 cc’s given each feed (instead of 67). (1 ounce = 30 cc’s) This means now a “full feed” is less than 2 ounces. It’s very important that preemies grow as quick as possible, as that is the main thing that will help them grow out of problems (like her lung disease). They like them to grow 1 oz a day.

I did have a few feeding successes; I got her to take a full feed yesterday evening. Dad was there too, so maybe she liked having both of us around her. But her nurse this morning just got her to take 30 cc’s, so she still has a way to go.

Because Kaitlyn has been on antibiotics for almost 2 weeks, she also has a terrible diaper/yeast rash. She’s super uncomfortable and irritated, which is usually never the case. The antibiotics were for the red swelling in her throat (which was cultured to be eColi).

Her cry. She still really isn’t crying, but we can hear something. I don’t really know how to explain what we can hear, sort of a guttural type noise when she is crying. It breaks my heart when I see her crying, turning red when she is really upset, but not making much noise. She pumps her feet and waves her little hands around, and opens her mouth, but not much noise comes out. There is another baby in the NICU that has the loudest cry you can imagine, I tell Kaitlyn that she is supposed to sound like that.

We would give anything to hear a nice, loud robust cry. Isn’t that the opposite of most new born parents?

As of now, Kaitlyn’s Docs want to just continue what we are doing. She definitely gets pissed off when you try to feed her more than she wants to take. She clamps down her lips and pushes the nipple out with her tongue and shakes her head from side to side. It’s obvious that she’s done and that she’s going to eat on her own schedule. I tell her all the time that if she would just eat more she can come home. Unfortunately, she doesn’t seem to understand that it’s up to her.

Here is Kaitlyn "clamping" her lips down saying she doesn't want any more bottle.

The good news is that she is doing very, very well off oxygen. I was sort of hesitant to mention this much, as if I might jinx it by concentrating on it. But amazingly, she is doing great. The docs warn me that when (not if) she gets her first cold it is likely that she’ll have to go back on oxygen. All we can hope for is that she continues to grow which will make her lungs grow and heal from her Chronic Lung Disease.

Dad got to give Kaitlyn his first bath yesterday!

Just prior to the bath, a little father daughter bonding with a little helping hand from a nurse.

Auntie Elissa from Conneticut holding her neice for the first time over the weekend. Elissa is also pregant with her own little one, so Kaitlyn will have another cousin nearly the same age.

Liz taking Elissa to do a little "sight seeing" in SF in-between Kaitlyn's feeds. Brian had to work unfortunately.

Kaitlyn has gotten very good at both scratching her face with her nails and pulling out her nasal feeding tube. Here she is with mittens on. You can see her scratched face near her nose/eye.

Kailan, Our other daughter, Update

Our dog Kailan came out of surgery ok, but we are still waiting to see the outcome. She is home with us (as of yesterday), but is definitely not feeling well.

Brian is at work today, so I have to take a day off going to the hospital today to be with Kailan. The vet did find some partial blockage stuff in her intestines, but sadly they are not convinced that was what the problem was. She is shaved in so many places, has about 20 staples on her tummy. She is definitely in pain. She did eat today though.

As soon as I saw her after the surgery, I started to cry. She is too old of a dog to have to endure all of this. And I feel especially guilty because we think the culprit is that she ate both my wound packing stuff and my “pads” after delivery. We tried our best to keep them out of the trash once we realized that’s what she was eating, but with all that happened in the beginning after my delivery, we probably were not the best dog parents for awhile.

When it rains it pours

You may remember I've mentioned our doggie is sick...well after more tests and more x-rays, the vet has determined that she probably does have a blockage intestionally and has to have surgery. Her surgery will be tomorrow (tuesday 1/17) in the afternoon.

Please pray for our 12 year old doggie, Kailan. I don't think we could handle loosing her right now.





These pictures are a few years old, she's lost at least 10-15 pounds since she's been sick.

Today Kaitlyn didn't do as well as the last two days feeding (where I was able to get her to nipple (suck from a bottle) 55 cc's (almost 2 ounces). She needs to be taking a MINIMUM of 2 ounces per feed (6x a day) for us to really start planning her homecoming. Today she took only 20cc's :(

On a brighter note, Kaitlyn is, however, 1 ounce away from weiging 6 pounds!

The Kaitlyn Fan Club Needs You

I don't have a whole lot of new news to report. Kaitlyn is still not eating well. It's getting very frustrating, we so want her to come home!

Brian's sister Elissa is here visiting her niece Kaitlyn for the first time. Elissa lives in Conn, so it was a long way to come visit, and Elissa is also expecting a child in May this year.

Kailan (our 12 year old dog) is still sick :( I just spent $600 on labs and x-rays and more on Thursday, and we still don't know what's going on. She has lost so much weight it's just terrible. A wonderful vet, (Amy, that I met via the new Mom's group I just joined here in San Rafael) has offered to help us as much as she can, she donated 4 hours of her time examining her -she commented that Kailan looks like a "Hurricane Katrina" pet victim. (Amy has gone to New Orleans to help with the pet victims of Katrina). Kailan just breaks my heart looking at her.

About you!!

I am always amazed to watch my blog counter go up and up as so many of you log on daily to check in on Kaitlyn's progress. There have been 8,500 views of my blog since it's inception. Amazing. Thank you so much for all of your support.

My goal is to print out in hard copy my entire story, including all the comments, so that I can give it to Kaitlyn when she is older so she can know how many people have been routing and praying for her.

I'd love to know who all of you are.....so I ask a favor of you, please add a "comment" to the bottom of THIS post. Just click on the "comments" link right below.

You can either choose to register (you won't get any spam from registering), or you can just leave an anonymous note. Either way, in your comments, be sure to say who you are, how you know us (or who told you about my story) and where you live (city, state/country).

Thank you again for all of your support!

Love, Liz, Brian, Miss Kaitlyn and Kailan (our dog)

101!!!

Well, yesterday was Kaitlyn's 101st day in the NICU. She's a Centurian!

Of course she's pulled out her nasal feeding tube a few more times (it is supposed to last a month!). But yesterday I was able to take a few pictures while it was still out.

Her feeding is still the same - not great. Mom is getting very frustrated, as she wants her daughter to come home, and she can't come home until she starts taking all of her milk.

Kaitlyn was at least switched to "on demand" feeding, which means that she will be able to eat when she's hungry, but still has to take at least 120 cc's every shift (every 8 hours). So if she doesn't "nipple" any full feeds she will still have to be gavaged what she doesn't take. The thinking is that she will wake up hungry if she hasn't had a full feed and want to eat more. So far this hasn't seemed to have helped.

Look Ma, nothing in my nose!

A close up, look at those chubby cheeks, double chins and rolls on her arms.


Here are some "early" pictures for size comparison, this was taken on Halloween, 10-31-05.

My hand for comparison on Halloween

This was taken just a few days after Kaitlyn was born.

Great news today...

Wow, what good news! Kaitlyn is off oxygen!!!!!

We were surprised today when I called the NICU and was told that Kaitlyn is off oxygen completely! We had pretty much resigned ourselves that we were going to be going home on oxygen, but this now changes things. She could still back-slide once the steroids wear off, but we are hoping that won’t be the case. She still has chronic lung disease, but this is a big step in the right direction for her lungs healing.

She went down in weight the last 2 days, so she is slightly under 5 1/2 pounds.

Miss Kaitlyn was wide-awake today when we visited her, just like she knew that we were so excited for her and she was excited for us. What a great day!

Hi Mom and Dad! Look, no oxygen tubes. (the tube in Kaitlyn's nose is her feeding tube - it really doesn't bother her)

More pictures of my sweetie

Kaitlyn looking intently at Dad

This was right before Kaitlyn pulled out her nasal feeding tube without meaning to

This is one happy baby!

So many cute pictures today, I couldn't decide which ones to post!

Dad attempting to feed Kaitlyn, she is not very interested (as always).

Kaitlyn looking a little crazed in this picture

Kaitlyn is getting "fed" in this picture. The nurse is gavaging her my milk. Gravity pulls it into her stomach via the tube in her nose.

Kaitlyn looking again at Dad while she's being fed

e Coli again?

Remember that I had sepsis with e coli after the girls were born? And Kaitlyn also had e coli that had to be treated. Well, the docs took a swab of the red swelling in Kaitlyn’s throat and they cultured something…..yup, e coli!

At least that hopefully explains what the red swelling was all about, so Kaitlyn is taking antibiotics for 14 days. She never showed any other sign of infection (fever), so if it weren’t for the scope test they would never have found that. That still doesn't explain the 2nd cord though, just why they couldn't see that cord due to the swelling.

Additionally, because she was given steroids, her oxygen needs have gone way down, in fact, she’s basically on “room air” - 21% oxygen which is what you and I breathe. She’s still on the cannula, but it’s turned down all the way. Unfortunately, I heard from one nurse that the effect of the steroids might be temporary so I’m trying not to get too excited.

There is another blog mom of preemie twins that has been visiting my site, and sadly, one of her twin daughters has been diagnosed with Cerebral Palsy. My heart just goes out to her and her family. It has made me afraid of what the future holds for Kaitlyn. She didn’t find out for months after her girls came home. It’s terrible, because she is going through so much and I’m now so worried about my own daughter.

This road we are on is no fun.

I’m going to talk to the Doc tomorrow about the steroids (whether the effect will go away), complications from the steroids (brain development) and what her chances are for disabilities long term.

Kaitlyn had a new gavage tube placed – it goes through her nose. As much as it sounds terrible, it was killing me to see her so uncomfortable with the mouth gavage tube every time she had to be fed. She just gagged and gagged. She has also been showing signs of oral aversion – not liking anything near her mouth, which is not good for nipple feeding. The one now in her nose can stay in place for 30 days. It’s not pleasant to look at, but I don’t think it seems to be bothering her much.

At her feeds she’s taking about 1 ounce (30 cc’s) more often than not, so that’s good news, but her “full feed” is a bit over 2 ounces, so she still has to be gavaged the remainder. I’ll start getting very excited once she starts to take more full-feeds on her own.

My friend Diana was here from Los Angeles to meet Miss Kaitlyn for the first time. I blew it and didn’t get a picture of Diana holding Kaitlyn, but it was so great for them to meet each other. I hadn’t seen Diana in quite some time, (a year I think) so it was a great treat for mom to have girl sleep-over when Brian was at work and catch up on old times. Diana spoiled Kaitlyn immensely with all sorts of great pink girly things, blankets, clothes and more. Kaitlyn is one lucky girl with all the people who love her! I can’t wait for her to come home and grow so she can wear non-preemie clothes.

Today I took a break from driving to the city and going to see Kaitlyn. I miss her so much, her smell, holding her, touching her skin, but I actually don’t feel guilty (for the first time in a while), I needed a break… which allowed me to get some work stuff done. I send out a monthly email real estate newsletter which I have not done for a very long time, due to everything that’s been going on. It takes me hours to complete and my current “full time job” of going to the hospital every day has made it difficult. Now that January is here, my plan is to get back into work mode – I have to financially. I haven’t worked for 7 months now – hard to believe. Dad and I also got to spend some quality time together for a change, which was also a nice treat.

The miracle of birth

The miracle of birth

On 1/2/06 I was able to watch my step-sister give birth to her beautiful new son, Donovan Joseph Cicero. I was so honored that she let me be a part of her delivery. It was amazing to see how Mother Nature had birthing intended; it sure is a much better experience than I went through.

Whitney’s labor was actually quite quick (this was her 2nd child), and with about 6 pushes little DJ came into the world. Hearing his first cry was something that I never got to hear with my little ones, it brought tears to my eyes. The miracle of birth is just that an absolute miracle.

If you would like to see pictures of the little guy, here is Donovan. It’s amazing to me how “big” he is, at 7 pounds, he likes like a giant to me.


Whitney delivered at CPMC, where Kaitlyn is. It was nice having the whole family there to see both babies. Remember that my due date was 2 days after Whitney’s, so our cousins are the same age (even though Kaitlyn was born 3 months earlier). It was nice going

Kaitlyn update:

She has been taking some of her bottles lately (not the whole feed, which means she still has to be gavaged), but this is good news at least.

Zero Today.....

Today is a big milestone day:

Today is my original due date (1/4/06), which means Kaitlyn is officially "born" today - her "Gestational Age". All of her developmental milestones will be based on today as her age

Today is exactly 3 months since Kaitlyn and Corinne were actually born however (10/4/05)

She has been in the NICU for 91 days and we have no idea when she will be coming home

Very strange that their birthdates were both on the 4th.

Bronchoscope results - good and bad news.....

Well, the good news is that she recovered fairly quickly. She was very upset (about 2 hours afterwards)...She cried and kicked...I was able to quiet her down by putting her to my breast and she breast fed for about 15 minutes then fell asleep!

I went to pump directly afterwards, and when I came back out, she was again fussy and wide awake...this time I bottle fed her, she only took 25 cc's (out of 60 cc's), but she was so awake. Much, much better than her recovery from the eye surgery.

Bad (or so-so news): One vocal cord is moving and working, but they can't see the other cord. She has some swelling of specific throat parts (Sorry, don't know the medical names) so they can't see one of her cords. They feel that it is paralyzed, however, but they really don't know. They also do see some other areas which are "narrower" than it should be which is probably from the ventilator.

So, in layman’s terms, they don't really know why she isn't crying nor why she has the swelling. They think the swelling could be reflux (however for her swallow test she did not show any reflux). But they don't know if the swelling is causing the cord not to move, as they can't see the cord.

So, she is going to be put on 2 courses of a new steroid (to hopefully help reduce the swelling), and reflux medicine (common for preemies), then possibly re-scope her again in 2-3 weeks.

Another procedure...

Well, I'm tired, but just wanted to post a quick report. Kaitlyn is having a Bronchoscope (sp?) procedure tomorrow to check what is up with her seemingly non-functioning vocal cords. She will be sedated, but not under a general.

Here's a cute picture from a few days ago when she was actually awake (which is rare). She is still not eating much on her own (so she is still having to be gavaged- a tube inserted through her mouth to her stomach. She HATES this and gags every time. Mom hates to watch it).

She now weighs 5 pounds 3 ounces.