Monday, February 13, 2006

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


Anonymous said...

I am so happy for you guys!!!! She is such a cutie!!!!! It was a long road but you guys made it and it has made you guys even stronger!!!!! We will have to have our little miracle babies meet soemday!!!!!!!xoxoxo
Dillon& Caitlin

Anonymous said...

Congratulations Liz !!

Anonymous said...

I emailed you a while ago, and even though we haven't corresponded since, I have thought about you and your girls everyday, and check your site often for updates. As I sit here now reading your last two posts, I am openly crying tears of joy for you. I can only try to imagine how bitersweet it must be bringing home only one girl, but I too believe that Corinne is in Heaven watching over her beautiful sister and family.

I must say Kaitlyn is BEAUTIFUL, and as the mother of a barely 6 pound 1 1/2 month (corrected) preemie, I am jealous of her weight gain. I am also amazed that Kaitlyn managed to stay off the oxygen...GOOD FOR HER!!! Natalie is on oxygen and two monitors, and probably will be at least through the winter.

I hope the next few months are happy and healthy. I can tell you firsthand it can be difficult dealing with some of the stresses of a "newborn" preemie at home - the sleepless nights, the feeding issues, the "house arrest" except for when you are going out to one of your hundreds of doctors appts, the ban on visitors.... But believe me when I tell you it is ALL WORTH IT!!!

Anyways, I just wanted to add my congratulations and prayers to the many others you have received. Kaitlyn is a very lucky girl...she has wonderful parents on earth and an angel in Heaven. I know she will continue to thrive and do well.
~Jera (mom to Natalie - born at 25 weeks (1lb 12 oz) after PROM at 22 weeks.

Sarah said...

Hooray, hooray, hooray! I think that it's totally expected to miss the NICU a little bit... For the first several months that we were home, I'd occasionally be thinking about how to plan our evening, and I'd think, OK, we'll have dinner, boil the pump parts, and then head to the hosptial.

Oh wait.

She's in the other room asleep in her bouncy seat.

At the NICU, all the things that make our babies special are normal, and everyone understands the issues that we have as parents & families. On the outside, nobody does.

I highly recommend going back for visits. We went twice in the first 2 months that Shoshanna was home (in both cases she was at the hospital anyway for tests), and twice when we knew her primary nurse would be working because we'd gotten really close with her.

All of which is to say...

Hooray! Love every minute of it, even with the insanity of the nurses and the doctor's appointments, etc. And I highly recommend sanity-saving trips to the grocery store in the wee hours of the night (we found that there's NOBODY there at, say, 11 pm on a Friday).

Shoshanna's daddy says "Their daughter's a little cutie. She'll be a heartbreaker one day."

Jodi from PROM said...

Oh Liz,
She's so beautiful! See, I told you that all your bedrest and efforts to save the babies would be worth every minute! I'm so glad you're enjoying her so much.
Best wishes!
Jodi from PROM

michelle flannagan said...

Liz- I was in tears as I read that, happy happy tears for all of you....Wasn't that first stroller walk the best? Miss Kaitlyn looks great, and it's great to see pics of her at home!!!!

I love the knives/scissors picture, very funny, we have one like that, with beer bottles. You do have to have a sense of humor to get through all of this....

Monday is Anna and Declan's 4th birthday, and reading your post today, brings back so many memories of their time in the NICU. Looking at them now, going to school, gymnastics etc, it's hard to see those little preemies that I gave birth to 4 years ago. You will get to a point where you do forget for a moment their tough beginnings, as you deal with the day to day things, but it's always there, in the back of your mind.

Take care of that beautiful girl, and cherish every moment. Love, Michelle

Anna and Declan 02.20.02

julie deruvo said...

I am so happy for you guys! I couldn't help but cry tears of joy as I read your post.

I know this special time together (at home) will be cherished & unforgettable! Enjoy every moment.
God Bless you all,

Amy said...

What a great thing to read right before I go to bed! I am so happy you and Brian can snuggle all you want with your little "snurgler" now. She looks so beautiful, and the pictures of her with her daddy are really special. You can tell how proud he is of her. My heart is filled with joy for you.

Anonymous said...

Congratulations Liz & Brian! What a JOY & BLESSING that you were finally able to bring Kaitlyn home (& without oxygen too!)! We are so happy for you! The pictures are adorable! Kaitlyn is absolutely beautiful! I loved the freezer picture as've been obviously busy Liz!!!

We love you guys and hope to see you soon!

Ash & Mark

Becky said...

Congratulations on bringing her home!