Monday, December 31, 2007

Abigail was recovering from her little procedure yesterday. She is slowly getting rid of extra fluids. She still has an infection in her lungs, but that is not new.

Pop-Pop is leaving tonight. Abby is going to miss him a bunch.

Sunday, December 30, 2007

Another good day

Abby had another good day today - She had another "wash out" which is when the surgeons go in and clean out her chest cavity. Dr. John was pleased with her progress and was able to close her chest a little - not all the way - but we're getting there with baby steps. One of the reasons that we really want her chest closed is because there is a very high risk for infection keeping it open - in fact on Friday at the meeting with Dr. King, he shared with us that they never had a baby survive this long with an open chest - but as well all know, Abby is a fighter and will beat the odds. Her other signs are good, her potassium levels are up, she is peeing and we are slowly weening her off of her blood pressure medication. The focus is getting as much fluid off as possible so they can close the chest. Even though we will not be out of the woods once the chest is closed, it is a HUGE STEP so please keep up the prayers - they sure are working.
Yesterday, Abby did good. She lost a lot of fluids. Her lungs looked better. They started giving her breast milk, which is really good news. She peed a lot and had a big poop. They were able to ween her blood pressure medicine a little bit too.

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

The nurse painted her fingernails and toenails this morning. So - she got her first manicure and peticure at 2 months old.

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

Abigail had a good day today. Nothing major happened. Her chest is still open. Her blood pressure seems to be under control. Her breathing seems ok. The ultrasound of her kidneys was good, although she is not peeing as much as she was before. They think the left ventricle of her heart is not pumping as well as it should be. The left ventricle is the chamber that connects to the aorta and supplies the body with oxygenated blood. The left side is usually the stronger side. Since she had the transposition surgery (her aorta used to be connected to her right ventricle), we think it makes sense that the left side might not be as strong as it needs to be yet. With time, her left side should gain strength and be fine. She is still in critical condition.

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

Today was good. We were told her blood pressure was an issue. We had mixed feelings about this. It was a little low. We decided we were not going to worry about it right now. Then, Jenn just called the hospital and said she is on half the blood pressure medicine she was on this afternoon. She is still running negative and her blood work looked good. So - our feeling was correct. We think Abigail is doing great.

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

Merry Christmas!

We had an awesome Christmas. Our baby seems to be doing good and it actually snowed here today. That is very unusual. I never want to get overly optimistic, but things seem to be going in the right direction. Abby continues to lose fluids and her lungs are slowly but surely improving.

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

Two Months Old...The Night Before Christmas!

They cleaned her out again this morning. They do that to keep the infection from getting out of control. So far, it has not gone into her bloodstream. They changed her dressing. It's not that brown "seran wrap" anymore. They put on a skin graft and some silver antimicrobial thing over top her chest now.

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

Today was a day of recovery. Abby looked good. Nothing really happened, which is good. It was nice, she only had 1 nurse. They were getting more fluids off her. Jenn heard they were going to do a "clean out" tomorrow morning, so we'll see. Hopefully, that won't be a big deal. Dr. Igabashian said maybe Wednesday or Thursday they would close her up.

We had some very nice visitors come and stop by to see her.

Saturday, December 22, 2007

"The Force Is Strong With This One..."

Today was an amazing day. We got there this morning and the doctor said we would be going off ECMO this afternoon. He said they gave her a ton of blood last night. They were in "uncharted territory." He couldn't believe that she had survived after being given that much blood and blood products. She was still oozing a lot and it had gotten to the point that the ECMO machine wasn't helping her anymore. She needed to get off the machine, so that they could get her off the blood thinners, so she could stop bleeding. The only questions were the lungs and if she would just bleed out when they took the cannulas out.

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

Nice and Easy...

Today was relatively easy. The doctor said that she needed to rest and there would be no procedures today. We completely agreed. They just wanted her to relax today. We also enjoyed the "light" day. They just wanted to concentrate on her "drying out." She was very bloated from yesterday's surgery and needed to drain all those excess fluids. Her lungs are inflated, but are filled with fluids.

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

Abby is still fighting. She is an amazing little baby. Today was nerve racking, but ended up ok. We didn't really lose any ground today.

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

Where's Abby? - See if you can find the baby!

She had a stable day today. She is now on a vibrating ventilator which they hope will expand her left lung. Her right lung is pretty good now.

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

Today was not good. A lot happened. I'll try to keep it all straight.

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

Abby had another "good" day. We spoke with the doctor this morning. He said the goal this week is to close her chest. They would like to be able to close her chest, switch the ECMO to her neck, and switch the entire circuit all at the same time. That would be ideal. I know that may not make much sense to people, but don't worry. It is very complicated and unless you are living it, there is no reason to know about this stuff.

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

Abigail was better than she was yesterday, so that is good. If Friday she was on the edge, now she is 2 feet away from the edge. Her color looked better and her puffiness went down a little. The oozing has stopped, which is great news. She is peeing too, so that means her kidneys are doing good. She can hear, so we continue to read her stories. They shifted the position of her head a little bit.

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

Abby is in very critical condition. She is hour by hour, day to day. It is very complicated. She is receiving ECMO treatment. We can only hope that every day she gets a little bit better.

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

It was the night before surgery...

Here we go again. Hopefully this time everything goes as planned. They already switched her bed to the one that she will be in the PICU. We'll be heading to hospital early again. The first report of how she is doing is supposedly coming around 9:30.

Wednesday, December 12, 2007

Surgery delayed

Abby's surgery is delayed again until Friday. There are transporting another baby from Alaska that also has serious heart problems and has not received the quality of care that Abby has received. Even though we would like to get this over with, we completely understand. Good news is that Abby's stomach tube was taken out today and Dr. Baxter stopped her antibiotics, she was extremely fiesty and was looking around for a good hour. She had an eye doctor's appointment, everything looks good with the exception of a hemorage at the back of her left eye. The doctor stated that this is a normal occurance in premies and not to worry - they will check back in 2 weeks.

Tuesday, December 11, 2007

Abby is doing well!

Abby and I had a great day today, she seems to be back to her fiesty self. She did pull out her breathing tube this morning, but the awesome staff were able to stabilize her and get the tube back in. She also has an infection in her right eye, but no worries - it's pretty common with premies and she is on antibotics that will take care of it. Surgery is on for Thursday - we have not had confirmation of the time but I beleive it will be first thing in the morning.
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

Abby seemed to getting back to her old self tonight, which is a good thing. The rumor is that Thursday morning is the new day for the surgery. Nothing confirmed yet. We are all super tired.

The roller coaster continues...

The operation was postponed this morning. They found some blood in Abby's poop last night. This may be a sign of an infection in her gut. They are watching her closely, doing tests, and giving antibiotics. We have to wait and see how this evolves. It could be a fluke, in which case they could do the surgery in 2-3 days, or they could have to wait 10-14 days. If the infection is serious, one of the possibilities is that they would have to operate on her gut. It's called necrotizing enterocolitis. Read all about it:

I'd like to get off this ride now, please...

Sunday, December 9, 2007

The power of Grand Dad!

Tomorrow is the operation. She is the first operation of the morning. I think that everything is about as good as it can be. Dad and Heather held her today, and again, Heather gets the Poop Award.
We will be going to the hospital very early tomorrow morning, around 5:30. That way we can hold her, then walk her down to the operating room. Of course, we will let people know how things go.

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

Be-Bop and Auntie!

Both Heather and Dad used their magical powers to soothe Abby today. When they held her, she relaxed, increased her oxygen, and lowered her heart rate. Heather got the Poop Award tonight.

Thursday, December 6, 2007

Abigail was pretty good tonight. She weighed 2420. Nothing major happened - she is just in a holding pattern until the surgery. She will probably get another blood transfusion tonight, so she will be nice and rosy for Pop-Pop and Aunt Heather tomorrow.

Wednesday, December 5, 2007

6 Weeks Old

We met the surgeon today, Dr. John Igabashain. He is everything you would want in a pediatric surgeon: soft spoken, deliberate, and confident. The surgery is 7:30am Monday morning, although it is possible it could be sooner, but not likely. It will take 5-6 hours. There will be a team of 10-12 people. We will have a nurse come out to us to give us hourly updates.

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

We heard a rumor this morning that Abigail's surgery would be Monday 12/10. This seemed to be confirmed tonight by the staff. We got a tour of the PICU (Pediatric Intensive Care Unit), which is where she will spend at least 2 weeks (could be more) recovering from her surgery. Then she will be moved back down to the NICU to learn how to breast and bottle feed. In the PICU, there are 12 rooms. They are pretty nice.

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

We didn't hear anything from the surgeon today. We both got some kangaroo time today. Abby was very alert.
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

Abby Cadabby

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.

Happy Holidays!

Saturday, December 1, 2007

Dr. King did another echo this morning. The doctor told us that her ASD (atrial septal defect) closed up. Those are the upper 2 chambers. Now there is less mixing of the blood, which in Abby's case is not good. It's not a dire situation or anything, but it may cause her surgery to be pushed up sooner. Dr. King is going to talk to the surgeon, Dr. Ishabashin, on Monday to check his schedule.

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.