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.

Surgery now August 5th

Well...we were scheduled to have Annabelle's surgery July 19th, but unfortunately we received a call a few days before letting us know that a sick baby came into the PICU and was going to need emergency surgery on the 19th. We were given a new date of September 7th. The surgeons and her cardiologist thought it would be okay to wait that long because she has been doing so good. They thought it would be better if she gained a little more weight. We were all set with September 7th.

At our last cardiologist appointment Dr. Forbes said he had been doing a lot of thinking and would like to get her into surgery August 5th. He thinks it would be okay to wait until September, but he doesn't want to risk her growing out of her bands and heart stents. He was also concerned that if we waited that long, she may have to have another cath. Since he has to go through her liver to do that, he definitely didn't want to do that again. He was so apologetic and everything he said made sense to me. So we are now less that two weeks from surgery.

Today Annabelle turned 8 months old. She can now roll over from her back to belly and is still working on sitting up. We think she may also be getting a tooth. Yesterday was the first time I took her to an unscheduled doctor visit. The poor girl has a rash on her legs. It doesn't bother her or cause a fever. The doctor said it was just allergies and that it was nothing to worry about. Boy, was I relieved.

Less than two weeks away. We are still not ready, but honestly I don't think we could be ready. It helps that we have great friends and family to help us along the way. Special thanks to Mom, Dad, Gail, Craig and my sister, Jenny. I can't tell you how lucky Annabelle is to have you all in her life. We love you all.

2nd Surgery 10 days away

Annabelle is now 7 months old. Her 2nd surgery is scheduled on July 19th, 2010. They will be doing what is called a Bi-directional Glenn procedure. I won't go into all the details, but it's the biggest surgery out of all three.

Since my last post Annabelle has been doing so good. We are going to the cardiologist every other week now. Every time we go the whole staff just loves seeing her. They love making her smile and talking about how cute her and her friend Donovan are together. She has not had any big issues. Her heart function is doing just what they want it to do. The past few times we have gone Dr. Forbes has had some students come into the room too. I can't believe how Dr. Forbes can explain her situation in so much detail and even remember specific dates without even looking at her chart. The only thing I don't like about the students being there is the fact that we have to go over her battle to live. I know that sounds extreme, but unfortunately it's the truth. We haven't forgotten her fight and never will. But because she's doing so good, its hard to believe everything she's gone through.

She is still sleeping through the night and if she does wake up, she falls right back to sleep. She is still doing good with the bottle and is now eating fruits and veggies. She is getting her own personality too. She laughs out loud and gets mad when she can't reach a toy. She can even roll over from her belly to her back. She is starting to let other people hold her besides mom and dad. She loves her big cousins. They make her smile. We have even left her with the grandparents to go golfing.

Her surgery is in 10 days. I hate having to go through this again, but we have no choice-it has to be done. We were given all the risks when we went to the surgery consultation and I still can't get the biggest risk out of my head. I have to keep telling myself how strong she is and that shes already come this far. She has proved that she wants to be with us. For now we are just going to get through these next few days as best as we can and then get her back home as soon as we can. I know everyone has heard me say this, but she is so special. She is my little angel face. I love her so much.

5 month's old

Annabelle has been home for 2 months now. She is doing much better than we thought. She came off her oxygen about one week after she came home. The only thing she was really having a problem with was her feeding tube.

After Annabelle was home she went to her first outing to her cousin's birthday party. That night was the first time she slept all night and since then she has always been able to sleep through the night. She spent her first Easter at Nana and Papa's house. The whole family came to see her, it was so nice.

About 4 weeks after Annabelle was home she went into the hospital for a scheduled heart catherization. They had to balloon up one of her heart steins. When we were finally able to see her again it was so sad. She was back on a ventilator, her coloring was not good and her oxygen level kept dropping. It was so hard to see her like that again. We were not expecting her to look worse. My husband and I stayed for hours until he finally had to convince me that I had to get some sleep. The next day was so much better, they took her off the vent and she looked good. One the third day she was starting to act like herself and we were able to go home. Once again she was doing better than before. Aaron and I now realize that even though it seems like sometimes we're going backwards-we're really moving forward. If that makes any sense.

Now for all the good news. One week after the cath Annabelle's occupational therapist suggested we take out her feeding tube before she comes to her next appointment. The night before her next appointment Annabelle coughed out her feeding tube. We weren't sure if we should put it back in but we also weren't sure how she would eat that night. So we gave her a bottle and...surprise she took more than half of the bottle. The next morning she took took the whole bottle. That day was her last day of therapy. Woo Hoo!

Two weeks ago her at home nurse also discharged her. She is doing so good. She has no problem with the bottle and has started to eat cereal. She is starting to hold on to her toys and is working on rolling over. It seems like everyday she does something new. We love playing with her and making her smile. She still melts my heart every time I look at her.

Her 2nd surgery is just around the corner. Her cardiologist is also talking about doing her 2nd and 3rd surgery at the same time. He said they do it every so often and that Annabelle would be a good candidate because she's growing so good. He thinks she would be able to handle it. We have mixed feelings about it. On one hand it's only one more surgery, but on the other hand it would be so much for her to handle. Right now it is just a possibility, so we're just waiting to hear more.

Annabelle Home

After Annabelle came off the ventilator, she was doing great. We knew we were getting close to getting her home. We weren't sure when, but just knew in our hearts we were on our way out of room 459. Everyday our favorite nurses would pop their heads in and ask "when are you going home"?

Finally we were asked if we wanted to learn how to give her meds and how to put in her feeding tube. Aaron and I were so happy. We both did a great job with her feeding tube and learing about all her medications. We were then asked to take a CPR class. I can't even tell you how good it felt to finally be moving forward. The day was coming, it was really happening.

After all of our trainings we had Annabelle home March 10th, 2010. Three months after she was born. It was the happiest moment of our life. We got lots and lots of hugs from all her nurses and the cardiology staff. They were really going to miss her but were happy to see her go.

Annabelle slept the whole way home. It was like she knew she was going to a safe and happy place. Right before we got home I just started crying. She was in our car, she was going to be able to be a real baby. I can't even tell you how that feels.

She is on oxygen and a feeding tube, but it isn't that bad. Traveling to her Dr's visits is a little tricky, but it's so worth it. She dosn't take a bottle very well so we take her to therapy twice a week. She is getting stronger everyday.

Aaron and I love that little girl so much. She is so brave and so very strong. She still has two surgeries to go, but untill then we're just going to love her and spoil as much as we can.

Annabelle was born on November 24th, 2009. Annabelle came into this world screaming her head off. I was so happy to finally be able to hear and hold my beautiful baby girl. We all noticed that Annabelle's hand was blue, but we were reasurred that it was normal and that she was fine. 24 hours later Annabelle's white blood count was above normal so they took her to have some tests done in the NICU. It was then that Annabelle starting to have trouble breathing. We were told that our baby was very sick and that she would need to be transferred to Children's Hospital in Detroit. I don't remember much after that. I just kept praying that she going to be okay. My in-laws drove us to the hospital and we met my parents there. At Childrens a nurse took us into a room and started to explain that Annabelle was again very sick. It didn't help that the nurse started to cry as she was telling us. At this point we still had no idea what was wrong with our little girl. 2 hours later 2 doctors came into the room and only wanted to speak with my husband and I because we were going to have to make some tough decisions. My heart just sank...what kind of decisions? This can't be happening.

We were told that Annabelle was born with Hypoplatic Left Heart Syndrome. The left side of her heart was under-developed. We were told that she would need 3 sugeries in order to repair the defect. We were both in shock. Why her? That night Annabelle was so sick that she needed to be put on a heart and lung bypass machine called ECMO. Her body was put through so much in the past 24 hours that she needed a break. She was on ECMO for 11 days.

She had her first surgery called the hybrid 3 days later. Four days after the surgery Annabelle was diagnosed with Necrotizing Enterocolitis(NEC) a bacteria infection in her intestines. She was put on antibiotics and her feeds were stopped. We were at a stand still for 2 weeks waiting for her infection to go away. After the Nec infection was gone the next step was to get Annabelle off the ventilator. She was having a difficut time so the doctor's decided to do some blood work to see if she had any other infections. It turns out she tested positive for Acinetobacter, another bacteria infection that is commom in hospitals. Annabelle was put into isolation and again put on antibiotics. While she was in isolation her Chest tube finally came out. It was such a big step, since we were told that if it hadn't stopped draining she would need another surgery to stop the drainage.

Finally when Annabelle was 8 weeks old she came off the ventilator. We finally got to hold her whenever we wanted. She loved to be held and cuddled. Unfortunatley a week later Annabelle was having problems breathing and was put back on the vent. Her blood and urine was cultered to see if she had any other infections. She tested positive for a urinary track infection and once again was put on antibiotics. After a week of rest the doctors tried to take her ventilator off again. This time it wasn't to good. As soon as the vent came out Annabelle would not stop crying. Her breathing was very rapid and her chest was constricting. Aaron and I knew she was going to be put right back on the ventilator. After about an hour they told us they were going to put the tube back in. Even though we knew the vent was going back in it still hurt so bad. I broke down and we had to leave the hospital. We went and saw a movie. It helped to get our minds off Annabelle for the moment.

The next day one of Annabelle's cardiologist wanted to meet with us. During one of her routine echos they noticed a blockage in her atrium septum, its an opening that allows blood to flow from the left side of the heart to the right. Because of the blockage, blood was backing up and putting pressure on her lungs. Which was why she was breathing so fast. They would need to do a cardiac catheterization to either balloon up the septum or insert a steint. On Monday February 8th Annabelle went back into the cath lab as my husband and I and our parents sat in the waiting room. About 2 hours into the procedure they came out and wanted to speak with my husband and I. We were told that because Annabelle's vein's in her groin were used so much for IV'S that they were to damaged to even attempt to go up to the heart. Instead they wanted us to sign a concent that they could go through her liver. I just couldn't believe it. It just seemed like this shouldn't be happening to her. We signed and prayed she would be okay. About another 2 hours later the surgeon came out and told us everything went great. He even showed us on the computer the whole procedure. It was amazing to see her heart. We could see the bands and the steits put in during her hybrid procedure and the new steint. I just wanted to hug Dr. Forbes. He truly is a miracle surgeon.

After the cardia cath Annabelle was still on the vent and doing good. We were told however that she has chronic lung disease just from being on the vent so long. With time her body will build up new tissue and her lungs will get stronger. The doctors were still weaning Annabelle off the vent daily untill 10 days after her cath Annabelle decided she was done with the ventilator. She coughed up her vent. It was the worst yet best moment ever. When she coughed out the vent she started to
de-stat. I looked up and their were about 6 doctors in the room. They pulled out the rest of the vent and got her oxygen levels back up to normal. Instead of putting the tube back in they decided to give her a chance without it. I was so happy. I knew she didn't need the vent. She has been off the vent for 2 weeks now and is so happy. She still loves to be held and loves to smile. She melts my heart just looking at her.

Annabelle is now 3 months old and we are finally starting to talk about going home. We still have some steps to take with her, but home is in the picture. The next step is giving Annabelle a bottle. We were told she would come home on oxygen and a feeding tube. Its all still a little scary, but we don't care. We are so thankful to God that we will be taking her home.

Annabelle almost died the day she was taken to Children's Hospital. It was the worst day of our entire life. I will never forget how me and my family felt that day. Annabelle is our miracle baby.