Monday, December 31, 2007
Pop-Pop is leaving tonight. Abby is going to miss him a bunch.
Sunday, December 30, 2007
Nana went back home. Abby said she will try and get better so Nana can see her when she is better.
Friday, December 28, 2007
We had our meeting with Dr. King tonight. I have a lot of mixed emotions about it. He stated all the reasons why she won't survive. Of course, we all believe she will eventually come home. Maybe tomorrow I'll give more details - tough night for everyone.
Thursday, December 27, 2007
Tomorrow we have a meeting with her cardiologist. We are a little apprehensive to hear what he will say. He will go over the plan of action.
Wednesday, December 26, 2007
Yesterday, they gave her a break from the paralysing medicine. They like to do that every once and a while to see how long it takes to "come around." She was opening her eyes today and moving her little hands a little bit- which was awesome. We can't wait to hold her. (They gave her more medicine so she would continue to "sleep.")
I think things are still going good. They might close her up Friday. So we will see.
Tuesday, December 25, 2007
I added a bunch of Christmas pictures to the slide show. We gave her the Supergirl outfit. The nurse even did her hair this morning.
Monday, December 24, 2007
We seem to have entered a new phase. Last week, things were happening almost daily. Now, we are in a slower time. She just has to get fluids off and continue to recover from everything that she has been through. We all have to have patience.
Merry Christmas to everyone. The hospital had carolers come through the PICU. This certainly is a different Christmas for all of us.
Sunday, December 23, 2007
We had some very nice visitors come and stop by to see her.
Saturday, December 22, 2007
He said that if it was any other baby, there would be almost no chance of survival, but because of the fact the she has made it this far, she might have actually have a chance.
So, they weened her down off the machine, the surgeons came in and the operation began. Talk about tension. The five of us didn't breath for about 2 hours. The surgeon meet us in the waiting and said everything went fine. She was stable and the bleeding was down to a trickle. Jenn asked him if it was OK to give him a hug, he said yes, and all 5 of us gave him a giant group hug. We think he was kind of surprised. She will recover for a few days and get the extra fluids off of her. On Tuesday or Wednesday they will close her chest. There is still a high risk for infection. They don't like to have the chest open for more than 7 days.
The entire staff at that hospital is unbelievable. They really earned their money this week. We are not out of the woods yet, but this was a major milestone.
To all the many people who have prayed for our baby: THANK YOU!!!! We know she has touched many people. So many people have been so generous. Many people we don't even know. I can't even express the emotions we have all been through. Please continue to pray for our sweet little Abby.
Friday, December 21, 2007
They were doing 3 things to get rid of the fluids. She is still peeing, the ECMO is now taking off fluids (which is something they started last night), and peritoneal dialysis.
The doctor stated that she is the strongest baby he has seen in his 10 years of medicine.
Jenn's coworkers came to visit us today. They had a fundraising breakfast this morning. They brought us an enormous early Christmas present!! We are so grateful. We decided that when she comes home, everyone will come over for a party. Then everyone can take turns holding our little Supergirl.
Hopefully, the plan is sometime they will take her off ECMO sometime this weekend. Here is a link from the hospital's website about ECMO treatment:
Thursday, December 20, 2007
They went in to clean out her chest, and ended up trying to see if they could get her off ECMO. They kind of did a trial run. They had her "off" the ECMO for over 2 hours. She was still physically connected to the machine, but she was doing all the work. (Once they surgically remove the cannulas from her heart, it's basically a "one shot deal" - there really wouldn't be enough time to get a new machine hooked up.) They decided that she was close, but that her lungs weren't quite ready. We saw her x-rays from 3:00pm today and they looked the best they have been. The plan is to let her recover tonight, then see what her lungs look like tomorrow, and then maybe try and take her off the ECMO. Abby is now on a oscillating ventilator, the vibrating one wasn't quite working for her. This seems to be helping her lungs quite a bit.
She literally has 10-15 doctors, nurses, surgeons, and respiratory techs constantly thinking about her. They do the rounds at 9:30-10:00 every morning and one doctor has to combine and balance all the opinions and ideas. He, Dr. Mark Buchholz, is responsible for writing the orders this week. She has well over 100 years of experience helping her. As one doctor has said, theories are great, but it always comes down to how she reacts to these different things, i.e. different medicines, ventilators, procedures, etc.
Tomorrow is another day, you never know what is going to happen. But we hope and pray she continues to improve. Her lungs are the thing we are concentrating on. If they can heal another day or two, she can come off the ECMO. The heart surgeon has been very pleased with the way her heart has performed.
Wednesday, December 19, 2007
They might take her off ECMO tomorrow, or maybe Friday. That would be huge. It could be rocky though. So hopefully everything will be good.
There is so much information to absorb. We have to be prepared for anything. Abigail is so strong, we have to be strong for her. I can't believe this whole thing.
Tuesday, December 18, 2007
They had to switch the ECMO circuit. That in itself went fine. About an hour afterwards, there was an emergency where the pump was stopping. She had to basically be "on her own" for a little bit. They had to bag her, which means manually blow air into her lungs. Her heart never stopped. She recovered and they said that, for some reason, the pump was sensing pressure against it. It was pumping blood into her heart and was getting pressure against it, so it turns off to prevent "an explosion." The good news was that when they were bagging her, her stats went up, which means that air was in her lungs. So, her lungs are inflated now, at least a little bit.
Then she had another surgery to clean out her chest. That in itself went well. They took one of her retractors out. Afterwards, her blood pressure dropped and the pump got clogged. This was another emergency. They had to clamp the pump off, and again she was on her own. She didn't do as well as before. They had to give her adrenaline. She does have an infection in the middle of her chest. They think that when they cleaned her out, they disturbed the bacteria (which grows on the plastic tubes in her chest) and showered her body with toxins. They also think that she might not be liking one of her 4 antibiotics too well. Again, she stabilized. They said she might just be getting used to the new ECMO circuit.
There are about 10 million variables that they have to think about and find the right balance for. She is so small, there is not a lot of room for error. This is an indescribable experience, it is a nightmare. I pray that she makes it through the night.
Monday, December 17, 2007
She is peeing, which is awesome. They are very excited about her pee production. It means her kidneys are still working and she is able to pee out excess fluids.
We asked the doctor about her chances for survival. He said it was 50-50. I never thought I would be happy for my baby when her chances for survival goes up to 50%. That is what we are dealing with. We know she is a fighter, she has been fighting since the day she was born. I can't wait until she gets off the ECMO. That will be a major milestone.
Many thanks to everyone who has stopped by, sent cards, and left notes. We really are so overwhelmed by every one's generosity. We don't know how we can ever pay people back.
Sunday, December 16, 2007
I am hopeful. I am thankful for every day.
There are so many things that can go wrong. She gets a ultrasound of her head every day. If there is blood in her brain, it is fatal because they would have to turn off the ECMO. They will have to switch out the ECMO machine sometime this week. This is a big deal because there will be about 45 seconds when she will have to "hold her breath" while they "plug in" the new machine. They have to switch the machine because there are clots in the lines. There is an arterial line in her right arm that is causing concern because it is affecting the circulation in her right hand. There is always a high risk for infection.
Saturday, December 15, 2007
We really appreciate everyone who is praying. Please continue to do so.
I will not be able to update the blog everyday as I have done in the past.
Thursday, December 13, 2007
Wednesday, December 12, 2007
Tuesday, December 11, 2007
Tomorrow we will have a special performance by a harpist for Abby. They are really big on musical therapy and it will be a great way to relax before the big day. Until tomorrow's update - have a great day!
Monday, December 10, 2007
I'd like to get off this ride now, please...
Sunday, December 9, 2007
Saturday, December 8, 2007
Abigail weighed 2490. She is sedated. When she gets agitated, her oxygen goes down and takes a long time to come back. Her oxygen needs go up and down, sometime its up to 50, 60, 70%, other times it's down to 20-30%.
We brought her the stocking that Nana made her. We also brought in a CD player with some kiddie music CDs. Dad and Heather put together her toy box and shelfing thing.
Friday, December 7, 2007
Thursday, December 6, 2007
Wednesday, December 5, 2007
It seems that she is ready for the surgery. You can tell she really needs it. She is retaining more fluids. Her lungs have lots of secretions and she is more agitated.
I feel terrified. I mean, my baby girl is having open heart surgery. What more can you say? It's amazing to think that if she would have been born even just 25-30 years ago, she probably wouldn't have made it this far. And I know that if she doesn't have the surgery, she won't make it too much further either. But we can't get worked up about things we can't control. We will remain positive. She has done so well up to this point, there is no reason to think that things won't turn out just fine. This time next year, we will be taking her to the mall to get her picture taken with Santa.
Tuesday, December 4, 2007
The nurse tonight made a collage with pictures she had taken. She also gave us a book to read about heart surgery.
Last night, Abby excabated herself again. Hopefully, that will be the last time she does that. She got a bigger tube put in, so that should help.
Monday, December 3, 2007
Jenn had a co worker meet us at the hospital. Iris brought us a really super home made chicken dinner with mac and cheese, green beans, and brownies for dessert. Iris also brought some people from her prayer group who said a nice prayer with us.
Sunday, December 2, 2007
We had a really nice afternoon with Abby today. We got her a Abby Cadabby doll to put in her little bed. For those of you that don't know, Abby Cadabby is the newest character on Sesame Street and she is a three year old fairy that uses her magic for good.
Abby is starting to open her eyes for longer periods of time and looking around and focusing - especially on us, which is pretty awesome.
We also bought our first christmas tree yesterday - we will include a picture of it in the blog as soon as we get it set-up.
Saturday, December 1, 2007
But she is doing good. We read her Dr. Seuss books. She seems to like them . She really looks comfortable when we can hold her.