Taylor was born on Friday Jan 23rd at 12:08am. She weighed 7lbs 6oz and was 19.75 inches long. She's adorable, which I know I'm very biased- but she's also won over every nurse and hospital personnel that have met her.
She's had a rough little life so far though. About 10 hours after she was born she was AirEvac'd down to St. Joseph's in Phoenix via leer jet (she already likes to ride in style!). I got to ride with her (yes meaning I was discharged from the hospital about 9hrs after delivery) and then Ryan had to drive down and met us.
Once here she was diagnosed with a rare Congenial Heart Disorder called Ebstein's Anomaly. Which the short and sweet is that her tricuspid valve is malformed which causes leakage between the upper and lower chambers and unoxygenated blood to be distributed to her body- which could cause her to cyanotic (or turn blue) and make her organs not function. Also, because of the cross flow of blood in her heart, her right atrium is very enlarged which could cause a heart arrhythmia. 
With all that said about her actual heart condition, she's doing great. When any baby is born, there is a duct that closes that basically forces the heart to use all 4 chambers, something that isn't necessary during utero. At this point we're just waiting for that to close to then see how her body reacts when that happens.
She has a private room at St. Joe's in the CardioThorasic Intensive Care Unit- or CtICU. Today she was able to downsize the amount of equipment hooked up to her because she is eating on her own and doesn't need all of the IV nourishment, she doesn't need oxygen because her blood oxygen levels are going great on room air. She also was able to have a line removed from her belly button which will allow her to be picked up and fed a lot easier (some nurses have let us and others haven't because of it). 
Overall, everything we hear from the staff hear sounds like they're all very hopeful about how she's doing and (fingers crossed) that she won't need to have surgery. But once again, that all depends on what happens when we know that the duct has closed.
Either way, we've learned and read enough that this is a condition that she'll be dealing with her whole life. We'll probably go home with monitors and oxygen and mommy and daddy needing to be very informed of what to watch for and do in the event that her condition worsens.
We've had so much support from friends and family and have been truly blessed. I can't say that the last 4 days have been easy for us, but the burden has definitely been lifted by everyone who has helped us with Hailey & Katelyn, provided us with things to make our stay more comfortable, put her name on temple prayer rolls in multiple states, had gifts sent to the room, or just sent well wishes and offers to help in any way we need. Although being away from home has made day to day logistics a little difficult, being in Phoenix where we're surrounded by friends and family has been so helpful!
I'll do my best to keep my blog updated as we actually have updates to share. As I said- we're playing a waiting game right now. But with as well as she's doing, the wait hasn't been so bad.
Thank you again for everyone out there praying for our family!
10 years ago
12 comments:
We've been praying for you guys since we found out on Sunday what was going on. I'm so glad to hear that she has been able to come off the oxygen, that seems like a good sign! And she is absolutely beautiful, hands down a truly angelic face. Let us know of anything we can do.
Renae told us about what was going on. We've been praying for you. And she is adorable. One of the cutest baby girls I've seen (of course I only have a boy so I can say that :)
Just want you to know that we have been thinking and praying for you guys! Hope things go well!
We're glad to hear she is doing a little better. We are keeping you in our thoughts and our prayers. The pictures of her are adorable.
I'm so glad things are looking relatively good! I hope everything turns out well! You look fabulous and she is just darling!! Please let me know if there's anything you need! I'll be thinking of you!
I reminded the whole primary to pray for you guys, so hopefully there are lots of little heartfelt prayers being said. We are keeping you in our prayers, and I hope everything continues to go well. And, on a side note, I am your visiting teacher, so if you need anything, ANYTHING, let me know. Also, I would like to tell you that you are a bunch of name stealers. JD and I liked Caitlyn, and you took it, then Taylor, and you took that too! What the heck?
You guys sure make cute babies! Your in our thoughts and prayers. If you need anything please let us know. Tod & Natalie
Oh My! Sounds scary, but also that you know what you are supposed to do, or at least going with the flow. Let us know if we can help, ANYTIME! She's adorable and a trooper!
Her eyes look like Hailey. She's so sweet and cute. I can't wait to see her in person. You look really cute too, by the way, especially considering the circumstances of you just having had baby plus everything else. You seem like you've been able to keep strong through all of this..very admirable!
I feel like I am so slow to be barely reading your blog. Congratulations on another beautiful little girl. Your experience sounds so familar as Collin was shipped via helicopter when he was about 8 hours old and we spent the next 3 weeks in the NICU. I hope that she is doing well we will keep you in our prayers.
I'm not sure if you remember me or not, but I actually was in the Surprise 1st ward with you and we worked on the Enrichment Committee together. We did the spa day and then you had your 2nd the next day! Hard to believe that was already 18 months ago. Anyway, I found your blog on Amie's and I just wanted to say that my thoughts and prayers are with you and your family. I hope that everything goes well - you know how much the Lord loves you and this precious child! Keep us updated as much as possible and God Bless.
First off, congratulations on another strikingly beautiful baby girl. So lucky. So what can I do? Do you need a visitor, babysitter, food. please let me help. my prayers are with your sweet baby and family.
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