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).
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 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.