Are we home yet?

Annabelle had her surgery August 5th. Before the surgery the only issue we were worried about was trying to get lines in Annabelle. Most all of her veins are still obstructed from having previous IV's in for such a long time and her right pulmonary artery in her neck is completely gone from being on ecmo. Well… it took two hours to get the lines in place for surgery. Her surgeon, Dr. Delius came out and said surgery was about to start. About an hour after that they came out and told us she was on bypass. We were told it would only be a couple more hours until surgery was done. That was at 11am. At 3pm we started to get worried. At 4pm we were staring at the door waiting for someone to come out. I knew at that point something was not right. At 5pm the cardiovascular nurse came out and told us that surgery had been done 2 hours prior, but that they couldn't get Annabelle off the bypass machine and that her oxygen levels were dropping down into the 40's. She told us that her heart function was great, but that her lungs were not able to take on all the extra blood flow from her surgery. She told us that Annabelle would be going back on ecmo. I felt like I had been hit by a truck. Was this really happening again? I knew what ecmo was and I knew why they had to use ecmo. This was not supposed to happen. Annabelle had already been on ecmo when she was born and so very sick. It was so hard to hear that. I was a wreck. The worst was going through my mind.

When we were finally able to see her I thought I would feel better, but her chest was open and the ecmo canulas were going directly into her heart. They had her chest closed as much as they could, but it was still shocking. I thought for sure that I would be strong and that it wouldn’t bother me. I thought wrong. Just when I thought I couldn’t possibly cry anymore, my eyes started to fill with tears. That was my baby on life support again. The funny thing was that we just kept saying how good she looked. I had never seen Annabelle so pink. The goal for that night was to wean the flows on ecmo and if that didn’t work then she would have to have a heart cath done the next morning on Friday to look at her lungs. Well the next morning she wasn’t able to come off ecmo, so she went back to the cath lab. They ballooned her pulmonary artery in her left lung thinking that would help get more blood to her lungs. Well the next day she still couldn’t some off ecmo. So on Sunday they took her back into the OR to clean out all the fluid around her heart thinking that would help. Sunday night she still couldn’t come off ecmo. On Monday she went back to the cath lab. They were going to try and put a stent in her pulmonary artery, but the artery was so small that they couldn’t get the stent in. At this point the last option was to go back and reverse the operation she had just one week ago. They were going to leave the aortic repair and patch up what they had taken out. I still can’t believe they can do anything like that. So on Wednesday Annabelle went back to OR for 12 hours. Surgery was a success and they were able to get her off ecmo. We were soooooo happy. We both hugged Dr. Delius.

Walking into Annabelle’s room that night was the best feeling ever. NO ECMO!!! I just want to say it again…no ecmo. What a relief. I still can’t believe how much we all went through in one week. Two heart caths, one trip to the or and two open heart surgeries. I wasn’t sure how much more Annabelle’s body would be able to take, but once again she has shown us how strong she is and how much fight she has in her. Annabelle will now have a total of 5 surgeries to repair her heart defect. She has already had 3 of them. So we’re back to where we started. In 6 months to a year she will have the surgery she had on August 5th.

It has been one week since the last surgery. Annabelle heart is doing great. Her lungs are just still not strong enough. The doctors are confident that her lung arteries and vessels will grow before her next surgery. She is still on the ventilator and she hates it. Every time she wakes up she is so mad. She tries to pull the vent out all the time. Now she is fighting her pain meds so now they have to keep sedating her. You would think that after everything we’ve been through that I would be okay, but seeing her struggle with the vent just breaks my heart.

I’ve finally gotten some time to write again. It has now been 4 weeks since the last surgery. Annabelle has been up and down. One nurse thought she was having seizures and they hooked her up to an EEG overnight. Thank God it was negative for seizures. The same day that the EEG was negative her heart rate and oxygen kept dropping. The next day her heart rate and blood pressure were dropping. They hooked her up to a defibrillator just in case. They never had to use it. They just kept pushing fluids into her and it all just seemed to sort itself out. A few days later Annabelle came off the vent. She was so happy. She took a bottle right way and was even playing with some of her toys.

Down we go again. Annabelle came off the vent on a Saturday and then on Monday was starting to throw up all of her feeds; she hasn’t even been able to keep clear liquids down. They also noticed that she wasn’t peeing well. They found that her kidneys have been a little damaged. They think with time it the kidneys will fix themselves. I sure hope to God their right. Today when I walked into Annabelle’s room she was turning all kinds of colors. She was really struggling to breathe. They are putting in a chest tube to remove some of the fluid around her right lung. They said that if her breathing slows down from the sedation that they were going to put her back on the ventilator. To top it all off my grandma passed away this morning. It’s been quite a day and it’s not over yet. I have never wanted Annabelle on the ventilator, but I don’t want to see her struggle. Maybe giving her lungs a break will jump start her kidneys.

Even though we’ve been through this before, you’re still never prepared. As much as you think you will be it just doesn’t happen. I think this time is harder because we’ve had her home and she was doing great. It’s just so hard to see her not being herself. We know she’ll get through this, she’s too strong not to.