Two Years Seems Like A Life Time

It is very hard for me to read back through Molly's Caringbridge. I try to do it from time to time. I start at the beginning and get so far and can't do it anymore. It can make me feel exactly how I did at that time and I never want to feel that way again. I follow a lot of kids with heart defects and Heterotaxy and they seem to be right on point developmentally or pretty close to it. I sometimes wonder "what did Molly go through that these kids didn't that would set her so far back?" so I decided to read through her Caringbridge from beginning to end. It made me sad. It made me mad. But most of all it made me proud. Yes, she spent the first 8 months of her life in the CICU but even after she came home she was still on Methadone and Ativan. She still had her trach. She still struggled with gaining weight. But what I found when I was reading through her history is that the majority of her time at Children's she was sedated or at times paralyzed and sedated. I guess that was my answer. I knew she was on sedation but I didn't realize she was sedated as much as she was or maybe I chose not to remember or maybe I just look at her now and I forget. She is so good at making us forget all that she has been through. Tomorrow will be 2 years since her first open heart surgery. Two years ago tonight we stood in her room in Bedspace 2, talking to her surgeon, going over all that was going to happen the next day. I remember standing there listening to him talk to us, feeling like I was going to pass out. I had to leave the room and go into the bathroom, kneeled on the floor because I was sweating and couldn't stand. I splashed some water on my face and walked back into the room. After he left we spoke to a cardiac fellow. He was telling us that we should expect Molly to come back up from her surgery on ECMO. They were expecting her to be that sick. We were devastated. We didn't know what to think. Now that fellow is an attending and every time I see him I will always remember that night. Molly was on the schedule for 7am on June 25th, 2010. We arrived early to sign the consent forms and spend some time with her before. I did OK until they were getting ready to wheel her away. I lost it. I couldn't hold the tears back anymore. We rode down in the elevator with her, kissed her goodbye and they wheeled her in the OR where they would spend the next 8 hours working on her tiny, complex heart. She was very sick and they had to put her on bypass early because she became unstable. We paced and paced the surgical waiting room. When we saw the surgeon after it was over it seemed like he was walking in slow motion towards us. He did so much work to her heart. He performed a miracle that day. He gave Molly something that I could never do, no one could ever do. That was the day that she started her journey home. Yes, it was a long journey but without this day, this surgery, she would not be here today. This is the day that we will always be thankful for. This is the day that we will always celebrate. She did end up going back in for her 2nd open heart surgery 2 weeks later to have her mitral valve repaired again and a pacemaker placed but once we had that first one under our belts then second one...well, I was going to say was a little easier but it is never easier. No matter how simple the procedure. As a parent you want to be the one to fix the boo boos, hold them when they are sick, make them feel better. It's not easy to hand your child over to someone else knowing they are your only hope at making your baby well again. As much as I hate that we had to go through all of this, I'm so happy that it's behind us and the things that we are working on now are feeding, talking, walking, playing and living/loving life! We still have doctors appointments but they're not as frequent. She still takes medications but she only takes 4 (instead of the 22 she came home on) plus 2 inhalers. We still have the constant worry about her belly but we try not to let it control our life. We just put it in a little compartment in the back of our head. Everyone always tells me how cute she is or she has great hair or long eyelashes but what really melts my heart is when people tell me to look at her you would never know she has been through anything and that means so much to me. I want her to be proud of who she is and what she has been through because not everyone has the same outcome but at the same time I want her to feel like she can be like everyone else. She is everything to us! Because of her surgeon, Dr. Emani, the cardiac attending that took great care of the 3 of us, Ravi and some of the nurses that we love so much we have our miracle home with us today!! Thank you everyone for being a part of our journey for the past 2 years. You will always have a special place in our "hearts".

A Break From Reality

We have had so much going on since my last post and it's been a nice break from all of the doctors appointments, early intervention and assessments. We took a little mini vacation and went to the Mystic Aquarium in Connecticut. We stayed over the night before. Molly did not want to sleep in her pack n play. She kept waking up, crying so I finally put her in bed with me. She has never slept in my bed and never will again. I put pillows on one side of her so she wouldn't roll off of the bed but every time I moved over she would move over too. For a little person she takes up a lot of room. We had a great time at the aquarium. I can't wait to go back!! Molly loved the sea lion show. She was sitting on my lap and kept kicking the guy in front of me so I turned her and she was kicking the lady beside me. She kicks her legs when she gets excited and it was kinda tight. I was just so happy that she loved it, had a great time and was able to be a kid!
The following weekend was the walk for Children's Hospital Boston. Our team members got together and decorated shirts and hats for the walk. We arrived in Boston around 10am. I got to meet a fellow heart mom which was so nice. It was a little chaotic trying to get where we needed to be. We brought Molly's wagon because we figured she would have more room. Our walk didn't start until noon so we found a spot on the lawn in the middle of all of the festivities and took some pictures, people watched and hung out until the start of the walk. It was only 2 miles but it was a great time. We had so much fun. It was great to be with people that cared enough to help us raise money for the hospital that saved Molly's life. We were able to raise $5,300 for Children's. We never could have done this without the generosity of all of our friends and strangers as well. We just can't thank you enough! It was just such a moving experience to be a part of something so great. Jay and I were talking last night and I said that as much as I hate going back to CHB, it's the only place that we feel "normal", accepted and understood. They are so amazing and perform miracles every day. How do you put a price on a miracle? You can't but we are going to make it a point to give back every year!
My sister and my niece came up from North Carolina. I knew this would be great for me and for Molly because she loves kids. Especially older kids. We crammed a lot of fun things and made a lot of great memories in one week. We went to the zoo, the beach so the kids could play on the playground, they went swimming in a baby pool on our deck, we played mini golf, went to Chuck E. Cheese and had a sleep over one night. I was very sad to see them go and I think Molly was too. Any time I can expose Molly to a normal kid thing it makes me happy.
Now it's back to reality. Early Intervention today and Thursday and Growth and Nutrition on Wednesday. I wish every day could be like the past 2 weeks but I will try to hang on to the happiness that it brought to me.

Not fair!

When other kids are attending preschool or going on play dates or going to the park or attending dance school or a baseball game or just being a kid, what is Molly doing? Well, when she doesn't have Early Intervention (which she has 3 times a week) she has a doctors appointment or some type of assessment. This week she had both. Just doesn't seem fair but that her life. Last week we had cardiology. This week it was her 2 year wellness visit. Of course she got mad when they weighed her. She weighed in at 22 lbs 14 oz which wasn't a surprise since she was just weighed last week. I finally calmed her down only for her to get mad again when she was vaccinated. Both of the vaccines that she received usually aren't given at this age but because of her multiple spleens we were able to get these vaccines approved for her. We spoke about everything from the LADDS procedure to cardiology, Early Intervention, developmental delays, Endocrine. Nothing that I really enjoy talking about. I don't need to be constantly reminded of her developmental delays. Early Intervention had suggested that Molly goes to see a physiatrist. I was not for it at all but I said I would bring it up to the pediatrician. The reason EI wanted her to see a physiatrist is because Molly's ankle turns over once in awhile when she's standing. I only have one baby but for a kid that spent all of that time in the hospital and is learning to stand and walk, I would think it might be normal. It's not all of the time. So the pediatrician agreed with me. She doesn't think Molly needs to see a physiatrist. She said if in 6 months she's not making progress with standing and walking then we'll talk about seeing an orthopedic for braces. The good news is we already have an orthopedic doctor since they fractured her femur when we were in the hospital. I also asked her about going to an outpatient rehab facility. Early Intervention just isn't cutting it. I just think she needs something more. So we are going to explore that in the near future. They get hung up on the fact that Molly is 2 and isn't walking or talking. They need to stop thinking of her as a 2 year old. She was paralyzed and sedated for the majority of her first year of life. She didn't start living until she came home and I've told them that a million times. Back to the Pediatrician...she was very happy with every aspect of Molly, which is a first for this doctor. That night Molly didn't sleep. Every single time she has a string of doctors appointments she has trouble sleeping at night. That coupled with the vaccines made for a very long night. She woke up the next morning crabby as can be. I gave her some Tylenol and she was better as the day went on and she was better today. Early Intervention thought it was a good idea for Molly to have a communication assessment. What they were hoping to get out of this was some input from communication experts. How can we help Molly along? Are there other tools we should be using? Are there apps for her ipad? I was afraid she wasn't going to cooperate because she was in a strange setting but she did great. She was little miss Chatty Cathy. She did everything they asked of her. She sat upright in a wooden seat for over 2 hours. She played with their toys, she made choices, etc. It was a very long morning. I don't even know what we got out of it. The highlight of the visit was that Early Intervention said that they have never seen her interact the way she did. They think it was the wooden chair she was sitting in and the bright room and asked if I could do anything to brighten up my living room. Yeah, I'll get right on that. The communication specialists said that Molly was the most social kid they have seen in a long time. And of course they commented on her beautiful hair and cute shoes. Once we were finished she took me on a tour of the school. I'm sure it's a great school but it would never be for Molly. It's for kids with very complex medical needs, kids that will never be able to take care of themselves. I don't know why she was showing this school me to. I left the place feeling kind of down about things. It's not fair that this is Molly's life. Why can't she just have a normal life? There are other kids that have spent time in the hospital and they are walking, etc. Why does she have to struggle? But at the same time, she's having the time of her life and I know that's what is most important. I really try to stay positive but every once in awhile these reminders get to me. I'll feel better when she wakes up in the morning (and by morning I mean after 6am) and I go in to get her and she greets me with her version of hi "HA" in the cutest high pitch voice.