Proud mama

8:10pm
Abi did great. I am so proud of her, she's indeed a fighter.
It's been a very long and tough day, mostly for Abi - I wish I didn't remember this as well, but I will and will remind myself and Abi in the future how amazing and faithful God is. He was there with her and the doctors all the time and will be in the CICU with her.
We were able to see her about 1 h ago.



She is doing well, a little swollen from the transfusion but that's normal.
The next 24-48h will be the most critical. If everything goes well she will have the chest closed on Friday.
Praying for uneventful and restful night for Abi.

J.

The Surgery Is Over

We just talked to the surgeon. He said the surgery couldn't have gone better. Abi has been already transferred to the Cardiac Intensive Care Unit. They are getting her settled down and we will go see her.

Due to bleeding they decided to leave her chest opened so she will be sedated untill they close her up. They will try to do that on Friday. Then they will wake her up. If she's doing fine they will try to take her off the ventilator on Monday.

The prognosis are good and they have already noticed some improvment with the leaky valve which is on the non systemic side right now. There's a chance it will improve further.

We are off to see our baby girl. More soon

Art


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Good news

3:00pm
Abi's heart is beating now!! The double switch is complete. She's lost a lot of blood, as expected, so she's on continuous transfusion. She's still on the bypass though. More updates in 1 hour. So far the surgery is going according to the plan....

J.

Update on surgery

12:45pm
Update from a minute ago: first part of the switch is complete; one of the clamps is removed; starting to warm up the room (its 60F now); Jackie - the nurse came to tell us that dr Kirshbom - the surgeon, is an excellent specialist and God is using his hands, and the OR is filled with angels. This was a confirmation of God speaking through others earlier:
Krista G. (12-08-09): "it will be a super natural-natural thing. The surgeon will be a puppet if you will and the HS will be guiding his hands and giving him strength to do the task speaking in to his ear what move to make next. The surgeon will say in the end that is the easiest/complex surgery I have ever done."
Karl C. (12-09-09 12:18pm): While I was praying this morning, I saw Jesus came into the OR and touched Abi on her head, and he then walked around and touch all the surgeons and nurses.

We feel at peace right now...
J.

Surgery-the lesson of waiting

11:11am
Abi slept all day yesterday after being sudated and woke up 3 times at night to eat. We could tell she wasn't very
comfortable, so I'm thankful she was asleep for the most part. We are up since 4:40 am. We couldn't give her anything to drink after 5, so it made especially difficult to keep her comfortable. Finnally, she calmed down watching Mickey Mouse- I am actually thankful for TV today. It bought us ans mainly Abi extra 40 min of peace and quiet. She actually smiled to us for the first time after 24h. So precious!
at 7:15am she was given meds to make her sleepy. I held her for an hour



until we were asked to walk to the OR area, where she was taken by the team of anastesiologists. She opened her eyes and looked with half curious and half frightened eyes as we kisses her goodbye and passed her to the nurse...."you take my mourning and turn it into laughing?"- not necessarily there yet... One of the hardest things to do; place your precious baby into strangers' arms trying to trust they will take good care of her...
So hard ........
We are sitting in the waiting area for updates every 1 hour.



Here's what we have received so far:
9:42 am - after anastesia, the surgery started
11:00 am - Abi's on heart-lung machine; closing VSD.

J.

Double switch it is...

7:10pm
It's been a long day filled with doctors, nurses and the army of other people who have continuously been invading Abi's room asking the same questions.
Since Abi returned from the cath, she has been sleeping for the most part of the day. She didn't eat until 4pm- for 13h. Once she started she drank 5oz of cherry flavored pedialite she'd never had before.
Anyway, we spoke with her surgeon and he chose to go with the double switch TOMORROW! Not longer than yesterday he wasn't really keen on doing this now because she is so small! Her systemic valve though leaks a lot so there is no point in waiting longer. We haven't signed up for that- that's for sure. The surgery will last about 8-9 hours and starts at 7.30. Along with the double switch they will be closing her vsd. It's going to be an even longer day. Probably the most terrifying, nerve wracking and .... The worst day of our lives. Our precious little girl will undergo a huge open heart surgery. Just this morning she was all smiles, cuddly and joyful and no one could tell her condition is so bad.
She will probably stay in icu for a good week, then a week or two in the perdiatrics... No, that's definitely not what we came here for... I'm hoping and praying for the best... Home for Christmas? Let's take one day at the time.
J.

Change of plans

11:01am
So here we are, waiting for Abi to come out from the cath procedure. She was taken there





at 9:30am and we just got an update on her. Fortunately, she's sleeping all the time and she just got some more sudation, so she will not be scared. The reason for cancelling the surgery at the last minute and going with the cath was that her saturation is in the 70-80% instead of 90s and the echo showed no overcirculation in the lungs. They are trying to find out what to do next. There are a few options: 1. Replacing the severely leaking valve only or with closing VSD (right now its 7mm). 2. Doing a double switch now. 3. No surgery for now. The answer to that we'll know maybe today. They mentioned a heart transplant but this option would buy her no more than 20 years (statistically) of life with 2 heart transplants and then it would be "the end of the road" as the doc said this morning.
Apart from that, Abi is doing exceptionally well, she is so easygoing and patient. Sometimes I think she understands more than we think.
She's handling this much better that mom and dad...

Jo