Sweet Baby Caralynn

Sweet Baby Caralynn

Monday, May 23, 2011

Miracle Baby

Yesterday was so hard! The dr's didn't think she was going to make it...

But a few hours later her numbers started going up to where they needed to be. But we weren't in the clear yet. The first 24 hours off ECMO were crucial to Caralynn and what her outcome would be.

By 12:30am, just 12 hours after coming off ECMO Caralynn was already off 1 of the 4 cardiac support meds! And the others had been weaned down basically to half from where they had started.

When we got in the hospital at 9am- she was back to peeing on her own, she had 4 poops (these are HUGE accomplishments!), her o2 was at 60, bp in the 60 range and her hr was about 150-160.

Now, at 5:30pm her urine output is SO good! Everyone is very pleased- normal output is 6-7ml and she's doing in the 7ml or higher range.... she has to make up for yesterday when she only did 4ml (for 12 hours!) after coming off ecmo.

Tomorrow Caralynn will be getting another echo on her heart and lungs done to see how everything is going. Then it'll prob go to 1 a week, unless there is cause for concern. We're also going to be having a neurology consult because she doesn't care to open her right eye all the way, she'll peak it open but not open it wide like she does the left. And she hasn't cared to since she was born.... so we don't think it's a side effect from ecmo. Nor do we think a stroke could be the cause because the rest of her facial expressions are equal... we'll just have to wait and see.

But we are SO proud of how great Caralynn is doing. She is our strong miracle baby. We love her SO much!

Sunday, May 22, 2011

~*~ OFF ECMO ~*~

This morning at 6am they started weaning her flows.
She was able to maintain her numbers very well!
Dr Teodori came in about 10:30am and had a look at her, how she was doing then talked to Dr Typpo (ped intensivist) and they both agreed that today would be good to come off- her heart is in really good shape and the lungs were as good as they'd get being on EMCO.

The OR came and set up in her room and at 12:30pm on May 22nd, 2011 - at 1 month 1 day - Caralynn came off ECMO!
For the first hour things were looking pretty good..
The second hour her stats started to drop........
They told us they didn't think her lungs were good enough, but they were going to try some drugs that would boost her heart and help with the blood flow that the lungs couldn't push through.
Chris and I took the 'big kids' to eat lunch and had a hard talk.... the dr's said if her heart stopped, that would be it, they couldn't do anything else because a heart & lung transplant hasn't been done in a newborn. And if they just did the heart, the lungs being in bad shape would make it fail.

So after lunch (which Chris and I couldn't stomach to eat) - we went back and talked with them again, understanding what would be done if things didn't work... we would lose Caralynn.

Shortly after, the new medicines came.
1 hour later- they were in and working GREAT! Dr Teodori was shocked with how good her stats were when he came in... he even went from 90 on her o2 to 80...
Now, 7 hours after coming off ecmo and she's doing realllllly good! We don't know much about her lungs right now and won't really until her morning chest x-ray.
Her o2 is now at 65 and she's maintaining her spo2 at 99-100 :)
Her blood pressure and heart rate are also in perfect range!

We're getting ready to leave the hospital as we've been here for 12 hours now with the kids and it's their bedtime. This has been the longest non-stop day we've put in with both of the kids here with us...

I pray for my sweet Caralynn every minute of the day and am so thankful for everyone else praying for her. Praise GOD she is doing good right now!! We pray that she will continue to improve and be able to wean off her cardiac meds ...

Friday, May 20, 2011

Coming off ECMO

Well- lots has happened in 9 days. I wish I could blog more about it, but the best way I've been communicating with everyone about Caralynn everyday has been on facebook...
Caralynn has been put on status 7 for the transplant list - which is an inactive status.
They did this because they think her heart is a LOT better!
Which give us a lot of hope :)
So since Tuesday 5/17/2011 - which is the first day they wanted to take her off ecmo.
But it got too late after Dr Teodori did a surgery and then had a procedure to do on another patient.

Wednesday 5/18- Her morning chest xray showed a lot of fluid in her lungs, so they were glad he didn't get to take her off the night before. They set up a vigorous suction schedule every hour to work the fluid out. He said he'd do it the next day after his surgery, which should be over at 1pm.

Thursday 5/19- They were all set to remove her from ecmo but then thought maybe one more day would help...

Today, Friday 5/20- After re-incubating her -removing it from her nose and replacing in her mouth, and then having a bleeding issue from a leg catheter, they decided that tomorrow or the next day would probably be better.

We're anxious to get her OFF already! Everyday she is on poses risks to all of her other organs, but we also need her lungs in tip top shape to come off. It's most annoying to be told today, no tomorrow, no the next day....
Thank you everyone for all of your thoughts and prayers!!!

Wednesday, May 11, 2011

Waiting on a heart, wing, and prayer

We've been so blessed to be able to make it to 20 days after Caralynn was born.

Her surgery was on April 27th- 6 days old.
It didn't go well. We almost lost her. The repair went okay, but not perfect.
But during the surgery something went wrong and it caused her heart to distend. And after the surgery the left and right ventricals were having a hard time working. There are also valves that are leaking too much.

They placed her on a ECMO machine which is a heart and lung by-pass to give her heart time to heal.
6 days after her surgery and on the ECMO, her heart still hadn't healed and they don't think it's going to.
The Dr and Nurses told us that we have two options: get a heart transplant or say goodbye.
We asked to have until Thursday for that decision because my mom would be in Phoenix to help us and we wanted her to at least be able to meet Caralynn.
The next day we set up to meet with a transplant team- we defiantly were not ready to say goodbye to her. She was sent to us by God for a reason- for a life- and we will give her the best life she can have here on earth.

The meeting went well- she would have to transfer to a hospital (St. Joes) down the street because Phoenix Children's heart transplant program wasn't starting up until June 1st. So we set up to do that, she would be heading over on Friday (May 6th).
On Friday they switched her to a travel ECMO circuit and were waiting on the official word that insurance had gone through. But in the mean time she needed her chest cleaned out -as her chest is still open. So Dr Pearl took her into the PCH OR while waiting for official word. We got the call half way through that procedure that she wouldn't be able to go to St Joes for the transplant because tricare insurance doesn't work with them...
Now the Dr's were scrambling to find her a new hospital- There were talks of Mott's in Michigan, UCLA, Stanford, and Diamond Childrens in Tucson. We picked Diamonds Childrens Hopsital (DCH) because they have an excellent surgeon and she would be the ONLY infant on the transplant list for 1A priority in the area. Not to mention it is only 2 hours from Phoenix and 4 from El Paso. So transportation would be a lot easier because when you need to transfer on ECMO to a further location - the only people that can do it, is the military! And that wouldn't be able to be arranged until Monday.

We've had great care at DCH so far- the Dr here though from an echo scan that he might be able to fix her heart. So Sunday, he went in to explore. Unfortunately, although we all had very high hope, her heart is just too broken.
Monday, we meet with the transplant coordinators and signed the papers!
Tuesday, May 10th at 6:07am she was officially listed on the 1A (top priority) heart transplant list.

Caralynn's other organs are all still doing great, she pees and finally after 12 days- she pooped! And thats exciting to us because that means no organs are shutting down. If any of her other organs would shut down, she would be removed from the transplant list.

So we pray everyday- all day... each time our phone rings that it's "the" call- the call that will tell us we have a heart. And in a whirl wind of just 4 hours, she will have it placed in her.

We have such wonderful friends, family, and strangers touched by Caralynn's fight- they are all supportive weather it's a nice comment on facebook, a phone call, text, or a donation... And we thank every single person supporting us. We love Caralynn so much and can not wait to have her home - around Christmas- as the transplant nurses said... :) wouldn't that be the BEST Christmas present in the world.