2 weeks home

2/24/06

Just wanted to write a new entry real quick – obviously with Kaitlyn home I seem to have less time to write in my blog. But I think that has more to do with the fact that I’m working again.

Kaitlyn has been home now for 2 weeks! Wow, so hard to believe, the time is really flying by. I can imagine now when so many of you had said enjoy the time when they are still so tiny, as they grow so fast!

At Kaitlyn’s pediatrician appointment yesterday, she is up to 7 pound 8 ounces. However, she only gained 3 ounces this week, so they decided to increase how much milk she is getting, so she is now up to 85 cc’s (she was 75 cc’s). That’s no fun, as it means more milk to gavage (feeding tube) for mom and dad. Sadly, her intake of milk via nipple really hasn’t gone up all that much. Sometimes we think she’s turned a corner and does great for ¾ of a day, then it’s back to her not wanting to eat. I just fed her and she only took 20 ccs by nipple and then I had to gavage the rest.

Thank goodness the projectile vomiting seems to have subsided. At one of her big vomits she pushed out the feeding tube so I pulled it all the way out (easier to give her a bath with it out, and easier to tape on her cheek when it’s clean so the tape doesn’t come off easily). After we put the tube back in this time, however, the vomiting changed to more regular baby spit up vomit. It wasn’t emptying her whole stomach contents across the room like before. Maybe it was just the placement of the tube in her stomach. Back at the hospital when she was doing the same thing and we changed the nostril that the tube was in made a difference. Now it seems more likely that it was just the placement of the tube within her stomach that actually made the difference.

It’s frustrating though that she isn’t really improving. We had so hoped that her being home would make her want to eat more, but alas, that doesn’t seem to be the case.

Kaitlyn hasn’t been doing very well with breast feeding. I think she’s gotten too used to the nipple from the bottle, which is often times the case with preemies. Besides the fact that if I breast feed I have no idea of how much she gets and it is so important that she get regular volume of milk/fortifier so she can grow.

My mom (Corinne) is coming to visit with Kaitlyn today for the first time since she left the hospital. She is sooo excited! I can just imagine when she first walks in the door. It brings a smile to my eyes. My mom recently donated a plaque in honor of Kaitlyn's sister - Corinne Margaret, at a foundation she volunteers at. It’s so sad that my mother’s namesake isn’t here with us. My mom owns a uniform costume company in Southern California and her staff threw her a "grandma shower" yesterday as a surpirse! My mom was so touched she called me crying. She is just so excited to finally be a grandmother (or Nana as she wants to be called). She has been so incredibly supportive (both emotionally and financially) to us with all of our trying times - we are jokingly calling her Kaitlyn's primary investor!

Yesterday, Brian brought Kaitlyn into bed with me in the morning and we had a little family snuggle. It was soooo incredibly nice to have her home with us. We all feel asleep. However, I did get sad, thinking of what it would be like to have Corinne, there with us too. All 4 of us taking a nap. I miss Kaitlyn’s sister incredibly.

The day before, I came back home from working and Brian had just laid Kaitlyn down on our bed with him. All 3 of us took a quick nap. These are things that we missed out on so much while we were at the hospital. It’s so nice to have her home.

We are finally getting into the swing of things. Between: defrosting my milk for Kaitlyn, fortifying it with preemie formula powder, pumping, eating, washing her vomit covered burp cloths and clothes, eating, sleeping, and my working on top of it all, we are getting the hang of being new parents.

Home for 1 week

2/17/06

Well, yesterday Kaitlyn saw the Pediatric Urologist at UCSF to follow-up on the ultrasound from the day of her discharge. She had to have a catheter inserted in her bladder, where it was filled up with a radioactive contrast so she could be x-rayed. They put lead gowns on us so we could her still during the x-ray, if we have lead gowns, what do the x-rays due to her tiny little body. I started crying when we got there, I hate all of these invasive tests on my daughter.

They discovered that she does have reflux of the bladder/kidneys (This is different than stomach reflux). It means that she has high susceptibility for bladder/kidney infections as the urine goes backwards. She will have to now go on and stay on a low dose antibiotic for quite some time. If she gets a UTI (Urinary tract infection) it can cause long term major kidney issues.

The other tough thing going on is that Kaitlyn is throwing up again with projectile vomiting. This is just terrible, as it takes us up to an hour or more to feed her, and then she throws the whole thing up. A LOT. This morning for example, she nippled about 20 cc’s (just under an ounce), then I gavaged the remainder (55 cc’s), she seemed peaceful, propped on my lap, I had to desperately pump (I had just woken up and switched shifts with Brian), when I was reaching down to get her bouncy seat (which holds her upright) she proceeded to vomit her entire feed. (Well, I guess it was her entire feed). It got all over me, my clothes, the rug, her clothes. She was like a fountain of vomit it comes out so forcefully. I feel so sorry for her. So I changed her, changed me, cleaned the floor (as much as you can while you are holding her), then re-gavaged her 30 cc’s (an ounce). She may have lost more, but then again, she may still have had some. I had also just given her 3 medications (reflux medicine, iron, and vitamins), so who knows if she vomited all of the meds, I didn’t give them to her again.

Today we have an appointment with her regular new pediatrician, and we are very anxious to know if she’s gained weight for her first week home. We are most likely going to have to do something to address her vomiting. I imagine that we will need to see a GI specialist. She’s already had a swallow study while she was in the hospital, which showed she didn’t have reflux. But the docs decided to put her on reflux medicine anyways. She shows signs of reflux, as she gets very uncomfortable after eating and does better if she’s upright – classical reflux signs.

OK, remember what Kaitlyn looked like naked when she was first born?

Kaitlyn, 2 days old: 1 pound, 10 ounces

Well, here she is now! 7 pounds 2 ounces

Naked baby pictures are the cutest! we took these on the 15th, again with her tube out before we put it back in.

She's still a little munchkin

ok, that's a cute but!

Looking at her papa

Sleeping on mom

I guess this is the site of a typical new parents house. I'm trying to eat dinner, check email, feed Kaitlyn (this was a LONG feeding session. ) Tivo remote ready to watch the olympics, breast pump in the background, syringes to feed Kailtyn her many drugs, her old feeding tube is on the table too with the orange tip, blankets and burp clothes at the ready, throw-up burp cloth on the floor pacifier, and Kailan (our dog) finally showing some interest in the slurping new arrival.

After eating, one peaceful girl, one tired mom

The Best Valentines Day Present Ever

2/15/06

Hard to believe that Brian and I were engaged 2 years ago on February 12th. Yesterday was Kaitlyn's first Valentines Day. Here are some new pictures of our little Valentine!

Look mom, no feeding tube!!! We wanted to take some pitures without the tube in and we wanted to see if Kaitlyn would do better (no vomiting) without the tube in her throat gagging her so we took it out for a few feeds. She actually did GREAT, and ate 2 whole feeds on her own (still with some vomit however), but then at night time she was too tired and we had to put it back in this morning. It was so nice to look at her and be able to pick her up without the tube hanging and getting caught on things.

Kaitlyn loves to wave her arms around in the air.

Tummy time with our cutie. Kaitlyn neck seems really strong to us already, but we don't know when babies would normally start holding up their heads. She again is technically 6 weeks old (even though she was born 4.5 months ago) .

Tummy time in color - ok, maybe I'm fairly partial, but isn't she the cutest baby ever!

Her head starts to shake with all her exertion of holding it up. While I was taking these still shots, Brian was videoing the moment.

I think this picture of my sweet husband shows how happy we are. We are both smilling and laughing at our daughter as we watch her hold her head up. My eyes are filled with tears now as I type this, thinking of how happy we are to have our daughter home with us.

Dad holding his little girl

Kaitlyn and Dad bonding on the couch. While we were at the hospital, Brian kept saying to me that he couldn't wait until he could hold our little peanut and just snuggle with her. She loves to sleep on his chest. See how she is gripping his shirt? Her little bottom and feet are just too cute.

Kaitlyn's first days at home

Yes, we are really parents.

It all feels so surreal, but our beautiful daughter Kaitlyn is finally home with us. Sorry for the delay in posting, but we are “newborn” new parents, with sleepless nights, learning how to take care of our daughter, and we are loving every single minute of it!

Kaitlyn is doing great. Still having her eating issues of course, but she is generally a really great baby, she sleeps well and is good at consoling herself (most of the time) unless she is really upset. She is so beautiful, Brian and I just love to sit and stare and hold her close.

Wow, we feel so lucky to have such an amazing daughter and are loving finally being real parents.

We had our first of MANY doctor appointments on Friday, the day after we got home with our pediatrician. She weighed in at 7 pounds 2 ounces! If you remember that Kaitlyn is officially 1.5 months old, she is low weight for a 1.5 month old baby. (even though she was born 4.5 months ago).

She looks and weighs like a “normal baby”, but it’s important to understand that Kaitlyn is a premature baby who was very sick and will have issues related to being so premature for quite some time.

On Friday I was on the phone setting the following appointments:

Pediatrician - we'll go weekly so Kaitlyn's weight can be checked

Urologist – Right when we left the hospital, the docs did one last test (an ultra sound) and found a kidney issue, so we are going to the urologist later this week and she’s on more antibiotics again. (a blocked kidney I think, caused from prematurity). She has to have a yucky test with a catheter on Thursday of this week.

Ophthalmologist to check in on her ROP eye disease - as of now, things look great, but she will be followed up with regularly. We don’t know if she will need glasses or not, it is too soon for that

Pulmonary Doc - to follow up on her lung disease – even though she isn’t on oxygen, she was VERY sick as were her lungs. She is at very high risk for RSV as well as any other flu/cold/respiratory illness, which means that we have to keep her fairly incubated away from people, especially other children. RSV is a virus that most young children get, which in a normal, healthy baby is not much more than a cold. With Kaitlyn, it could be deadly. She will get a monthly RSV shot during the winter months (she had her first shot the day before she left the hospital). The shot costs around $1,500 each!

This will be the doctor that will want to do a follow-up bronch scope test to check out her vocal cord sitaution. Her cry is still not really there, but she does make a look of squeaking grunts and gurgles, we call her our little snurgler (snorts and gugrles).

Feeding Specialist – to help figure out why she doesn’t eat well

Developmental Specialist – as Kaitlyn is at high-risk for developmental issues

Visiting Nurse - With her feeding tube and nutritional needs, Kaitlyn will have a visiting nurse visit regularly.

I’ll write more soon, but wanted to post some pictures. These pictures are in no particular order (I didn't want to spend the time to order them, sorry).

Tummy time at home

Our first trip out in the stroller on Sunday with Kailan and Kaitlyn. I can't tell you how excited that I was to FINALLy take a stroll with my daughter. I've watched jealously for 4 months of all the mom's with their strollers whereas my daugther was hooked up to monitors and cords in the hospital.

Sleeping on me earlier today

"Auntie Nurse Rose" at the hospital. Rose was there after my delievery and has been very special to us. She wasn't even working today but came in to say good-bye to Miss Kaitlyn.

Kaitlyn's nursery the morning we left to pick-her up at the hospital.

OK, you have to have a sense of humor for the following picture. I went to a work function on Saturday, which meant 2 days after she came home, Brian had his first Mr. Mom duty on his own. He did GREAT, he even got Miss Kaitlyn to eat 2 full bottles on his own....She hasn't had a full bottle for a long time at the hospital. This was very exciting. He is a GREAT dad. He loves our little girl so much it makes my heart sing.

Brian told me that Kaitlyn was playing with sharp scissors and knives while I was away. I thought he was joking until he told me to look at the pictures he took. This made me laugh so hard....look at Kaitlyn's face! (Remember this was a joke and she was highly supervised during the picture.)

Homecoming. This is Kailan (our sick dog) meeting Kaitlyn for the first time. Kailan wasn't all that interested in the new arrival, but has definitely been moping around. She's still sick, so we aren't sure if the moping is because she's no longer queen of the roost or if she's getting sicker on the new drug she is on. You can see how gaunt she is. Poor thing, she just breaks my heart. We've been trying everything, but she just can't digest her food properly.

Our freezer, the picture when it should be it's "fullest", as this was taken right before we left for the hospital to get our daughter. The previous picture I posted the bottom shelf was empty, now its full. Each bag has 14 bottles, between 3 or 4 ounces each. This is a LOT of milk to feed Kaitlyn. She now gets my milk plus powder formula fortifier, to boost the calories of my milk. It's EXTREMELY important that Kaitlyn get enough calories to grow and that's why her eating issues are such a big deal. Being a preemie, she is already behind where she should be for 1.5 months old.

Kaitlyn meeting Ethyn (Kaitlyn's NICU mate) on Kaitlyn's depature date. The best news is that Ethyn didn't want to be alone in the hospital, and he was due to go home the day after Katilyn. This was great news. I didn't want Ethyn's parents have to watch us leave and not know when they got to go home themselves. Ethyn also has a feeding tube (like Katilyn) and is on oxygen as well. Remember that we were convinced that Kaitlyn would be going home on oxygen also. It's great news that Katilyn is oxygen free. She was a very, very sick girl.

Ethyn reaching out to Kaitlyn for the first time. Very cute! Ethyn is a month older than Kaitlyn and weighs 10 pounds!

Kaitlyn had a night-time primary nurse that we didn't even know about until right before we left. Danielle came in for the doctor meeting on her day off. She was always the best nurse at getting Katilyn to feed.

Dad and Kaitlyn bonding. Kaitlyn loves dad's voice. She responds more to his voice than mine. She must prefer the deep voice, or maybe she heard so many female nurse voices in the hospital that male voices are very different - then again, she probably just knows it's her dad who loves her very much.

I did a quick lap of the main NICU unit with Miss Kaitlyn free and clear of her leads. Rose and Kerry were both there when Corinne passed away. They were the wonderful nurses who took pictures of our daugthers together in the same bed and even put Corinne's hand into Kaitlyns. I will treasure that picture forever. I can't say enough wonderful things about all of the nurses, doctors, Respitory Therapists at CPMC, where Kaitlyn spent over 4 months. I knew she was always in the best of hands.

Not only was I bawling when I left, but there were some tears from the staff too. So strange, all I wanted to do for 4 months was to take my daughter home, when it was finally time to do so, I couldn't stop crying and knowing that I was going to miss every one.

Kaitlyn at home during Dad's first time as Mr. Mom

Kaitlyn in her car seat about to go home. This car seat was given to us by one of the wonderful twin moms of Marin. She had alreay had a "car seat test" the day before. The hospital wants to be sure that the preemies don't desat in the car seat before they go home (meaning heart stops/breathing stops). that would be a bad thing. Kaitlyn did fine, but she's not looking very happy strapped into her seat. As soon as we picked it up, she was fine. Although it looks like she's letting out a blood-screaming cry her, it's not much more than a squeek with her vocal cord paralyzation.

Kaitlyn in her bouncy seat, given to us by another Marin twin mom.

Booties hand-knit for our 2 daugthers. Lori, a PROM (pre mature rupture of membranes) list member hand-knits booties for angel babies of the PROM list moms. She has knit so many of these to help us know that we have angel babies and is such an amazing gesture. She was so sweet and knit us a pair for both Kaitlyn and Corinne. I sent her the measurements of our daughters feet, so they really were knit for them. The white ones are Corinnes, along with the little angel baby card.

As I look at Kaitlyn here at home, I think of Corinne and what she would look like and what her personality would be like. I miss her terribly. But I do know that she is looking down on our daughter every day and helped bring her home to us.

Kaitlyn in her bassinet. This quilt was made by a voluteer for the hospital preemies.

Dad giving a tour of the house to Kaitlyn when we first got home

The best news ever!!!!!!!

It's 5:30 am on February 9th, 2006. I'm currently pumping because Brian and I will be heading into the city in an hour or so.....to get our daugther to bring her home!!!!!!

Yes, Kaitlyn is coming home to us today. She will have an NG feeding tube (nasal), but she is coming home.

Since July 26th 2005 when I had that fateful amnio, summer, fall, winter, the holidays have all past by, I've spent more than 3 months in bed, 3 weeks in the hospital, delievered my 2 beautiful daugthers 3 months early, held my first born daughter Corinne while she died in my arms, made funeral arrangements, I became very sick and could have died myself from e-coli sepsis, finally saw my other daughter Kaitlyn 4 days after she was born, finally held my daughter 6 weeks after she was born, packed my c-section incision for 2 months due to infection, saw Kaitlyn through at least 10 blood transfusions, 2 surgeries, among many other procedures, illnesses and infection, drove 4o mile round-trip to the hospital nearly every day for approx 130 days, pumped somewhere around 4,000 ounces of milk and now am taking home our nearly 7 pound daughter .

Miss Kaitlyn is coming home and we finally feel like parents. WE finally get to make the walk out of the hospital like proud new parents carrying our car set with our daughter in it. We have seen so many new parents walk out of the hospital and had so much sorrow that we weren't leaving and now it's finally our turn.

Finally.

We are ecstatic!

Love Liz and Brian.

Of course I will continue to update Kaitlyn's progress here on aLizard.com

Young Steelers Fan

As Brian is from Pittsburgh PA, he is VERY happy his home-team the Steelers won the superbowl!!

Dad burping Kaitlyn

Steeler Socks!

Before the big game!

Showing off the rear football of Kaitlyn's pink Steelers Jersey!

Go Steelers! Kaitlyn is 4 months old today.

Today (2/4/06) is Kaitlyn's 4 months birthday , but she is also officially 1 month old today, as my due date was 1/4/06. She will always have 2 birthdates. Developmentally, her adjusted birthday (1 month today) is what the doctors will use to gauge how she is doing.

Well, if you didn't know, Kaitlyn is already a BIG Steeler fan. Brian is from Pittsburgh, PA. Miss Kaitlyn's Aunt Elissa sent us this great Pink Steelers onesie and bib , as well as Steeler socks to get ready for tomorrow's big Super Bowl. Go Steelers Go - We want a happy papa!

A little helping hand from Kaitlyn's nurse to help her modeling her new clothes. It's a little big still! Where the snaps are are supposed to be over her bottom, it's now more like a dress!

Miss Kaitlyn wasn't a big fan of the bib! yes, she does cry, you just can't hear her. She was hungry. Feeding her right after this you would think that she would take her whole feed. But, as usual, she took about 15 cc's (30 is an ounce) then made it clear that she was done. Soooo frustrating.
A few days ago, Kaitlyn did great with her first tummy time! Look how strong her head and arms are already. I wish she was home. My daughter is "growing up" in the hospital.

More tummy time. The white tube is Kaitlyn's NG feeding tube. You can see the orange cap - that is where the milk goes in. Gravity feeds it - you have to hold the milk above her so it will be pulled into her stomach.

A proud pappa smiling at his big girl!

Kaitlyn giving mom a big hug. Both of her arms are spread out around me. This is how I spend MANY, MANY hours of my time. With Kaitlyn sound asleep in my arms. For example, I was with Kaitlyn yesterday for 7 hours, and saw about 5 minutes of her awake. Today when I showed up, I discovered her sound asleep after she had been awake for the previous 3 hours!!!! ugggh. I want her to come home so I can be with her when she's awake.


I'll update more on Kaitlyn's eating progress soon, (I'm too tired to do it now), but the short version is that her projectile vomiting seems to have stopped, it MAY have been caused by her NG (nasal-gastric) tube being in one nostril vs the other. Once it was switched back her new fussiness and projectile vomiting seems to have stopped.

All of Kaitlyn's tests so far have shown that she doesn't have reflux (she's had swollow tests as well as PH tests), but they have decided to put her on reflux meds anyways.

For the first time today I went on a real walk. I decided to leave the hospital after discovering that Kaitlyn had been awake for hours before I got there, knowing that it was likely that she wouldn't wake until late tonight, so I decided to drive down to Ocean Beach in San Francisco and go on a walk. When I was there I saw a few friends playing beach ultimate, I watched for a while and chatted with them. It was strange for people to ask, "wow, where have you been?" It was all very surreal - realizing that I haven't really had a "normal" life since July, when I went on bed rest. July! it's now February. That's 7 months, going on 8. My entire life has been on hold so that I can be a parent to my little girl.

I went on an hour walk and got to watch the sunset, it was very windy but it felt great to be outside. I remember those long 3 months of lying in bed just wishing to be outside. Now that I could be outside, I've instead spent every day driving to and from the hospital. Over 120 days.

Eat Kaitlyn Eat! We are going to have a difficult road ahead of us with Kaitlyn's eating.

And, if you read this far, I'll let you know a secret - we were due to go home the first part of next week (on 2/7) . BUT with her projectile vomiting, we are back again to figuring out what is going on. That's why I've been extra disappointed this week. The plan was to send us home with her NG tube, but now they are really, really pushing us to have a G-tube installed. A G-tube is inserted with surgery, directly into her stomach.

Eat Kaitlyn Eat

I've been super busy the last few days, but wanted to post just briefly. I’ve started back at work and have had to figure out how to pump while out and about. I’ve started pumping while driving to and from the NICU. Yes, while driving. I’m sure I’ve received some funny looks if people really “looked”.

I’ve been spending about 6-7 hours a day at the NICU along with working and pumping (total pump time a day= 3 hours or so). Eating and sleeping seem to be loosing out.

Kaitlyn is back in the Transitional NICU room (yeah, so much quieter).

Kaitlyn has not been doing well the last few days, she’s been unusually fussy and for 2 days now has had projectile vomiting. She's never been a fussy baby. She's eating even less or none at all compared to even just a week ago. She's supposed to be getting better, but instead seems to be back-sliding. They have no idea why. Everyone is stumped. Brian and I couldn't be more frustrated.

I’ve been getting a bit teary myself, as she still just isn’t eating. I feel like there is just something I should be doing different and that I’m lacking in motherhood skills because I just can’t get my daughter to eat. She’s now only eating about 10-20 cc’s out of a bottle before she gets royally pissed and just refuses to take any more.

Sorry about the short report, I’m tired, have to pump and am just basically in a downer mood.

Kaitlyn’s birthdays are in a few days. On the 4th she will be actually 4 months old and 1 month old adjusted. She has been in the NICU now for 120 days.

This is not what I expected parenthood to be all about. They say that “Patience” is something that parenthood teaches you. That’s for sure.