My hero!

I am not a person that is easily impressed. I don't get excited easily. I don't jump up and down when I am excited. I don't know when that changed because when I was little I would get so excited on Christmas Eve that I would go to bed at 5pm and lay in bed all night waiting for 4am when we would go wake our parents up so we could open gifts. Since Molly has come into our lives I'm starting to feel that level of excitement again. Well, maybe not the first year. I think I was too scared to get excited about anything because we were always waiting for the bad to follow the good. Each day since Molly has come home she has gotten healthier and stronger. We don't see it from day to day but we can see it looking back. I don't even have to look back very far. Recently each day brings new things. New foods, new developmental milestones. We could not be prouder.

Molly recently started crawling. When early intervention started coming about a year and a half ago the woman that was coming at the time told us that Molly was probably going to need a wheelchair. I don't know what she was basing that on but I was devastated that she even thought that. I don't know if it was because she was 1 and wasn't walking or what her reason was. To make a long story short, she no longer comes to our house. I wish I could find that woman now and show her all that Molly does. She acts like a normal little girl. Does she act like she's 2? No, more like a year but every day she does something that gets her one step closer to where she should be. She crawls all around. She gets up on her knees and is co close to pulling herself to standing. We have been working on standing a lot more with early intervention. They suggested to me back in May that she may need braces for her ankles. They no longer think that. I wish when I said "she just needs time" that people will start listening to me. She stands for pretty long periods of time and plays while standing up. She gets into things that she's not supposed to. She is just like a kid that has never been through any medical procedure.

Our biggest challenge so far...feeding. Of course this would make sense because she never learned to drink from a bottle. She was never fed any type of baby food. When we were in the hospital we only cared about getting her the proper nutrition and we didn't care how she got it as long as it was making her healthy. Now we are focusing on the "how she's getting it". She has been eating the same thing for awhile now...baby food, yogurt, baby food yogurt. I keep asking the Nutritionist and early intervention what the next step is and how do we get there. They don't have the answers so I'm just doing it myself. We offer her everything we have and for the most part she will try anything. Usually it's a few licks and that's it. Well, this week I offered her mac and cheese and she loved it!!! I almost couldn't believe that she ate the whole thing after eating a yogurt. That was fantastic and I was so excited but it's not good enough. Why stop there? The next day I tried chicken nuggets dipped in bbq sauce and she ate every one of those too. Today she had lobster, more mac & cheese and a whole piece of birthday cake! We are so amazed by all that she has done just in this week alone. After this week I AM EXCITED! All of our hard work is finally paying off. I hope she continues with her eating. I'm hoping at our next growth & nutrition appointment in August that they will stop her g tube feeds all together. Our biggest hurdle before getting her gtube removed is getting her to drink enough fluids. If she can't drink enough she won't poop and if she doesn't poop that means we don't get any sleep because a constipated Molly is a very unhappy Molly. So we're not rushing it but we are enjoying all of this new found normal kiddo stuff. To sit back and watch her play and babble makes us so happy and we are enjoying every second of her! She truly is our hero!

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.

Cardiology

Molly was seen in cardiology clinic today. She hasn't been seen since January. I never look forward to this appointment. Everything about it stresses me out. She has remained stable from a cardiac stand point for so long and she has done so well and I'm always waiting for him to give us bad news after always receiving good news. We have been taught to always look at the patient and if you look at her she looks phenomenal but sometimes I have a hard time with that concept. Molly woke up in a great mood and I was so relieved. I didn't want to assume she would be in a great mood for her appointment because I just never know with her. Last time she shocked us by being cooperative, no crying or getting mad. That was NOT the case today. The nurse came out to the waiting room to let us know that they were running a little behind and said that Dr. Rhodes (her cardiologist) didn't know if he was going to need an echo today. I asked her if we could do the echo first if one was needed because she was going to get angry and they wouldn't be able to get great images. The echo was going to be based off of the blood pressures and EKG. If the EKG showed something unusual then we would have the echo but it didn't so there was no echo today which was a good thing because there was no way she was going to cooperate. They did the EKG first and she got mad but calmed down when the lady started blowing bubbles. She wanted no part of the ipad today. Then it was time for her to be weighed. You would've thought they were cracking her chest open again. She was definitely the only kid in the entire building that was crying and carrying on...not that I cared. If she could've climbed off of the scale and jumped into my arms she would have. She finally calms down from that and now they want to check her sats and blood pressure. Her sats were 98 which is normal for her...well, for any healthy person really and her heart rate was 145 (she's paced at 121). So she was pretty angry. There was no way they were getting a blood pressure and they didn't. Dr. Rhodes comes in to talk to us and listened to her. He said he still hears the mild regurgitation on her mitral valve but it's the same that it has been. Her heart pressures sound great and her heart in general sounds great. I asked about turning her pace maker down and what we would look for if we did turn it down because she's not in a normal sinus rhythm. He said that you wouldn't be able to tell by looking at her but a healthy heart would be able to tolerate a junctional rhythm which is what she is in most of the time and he doesn't see why she wouldn't tolerate it. I'm not ready to find out if she will tolerate it or not so we are going to sit at a rate of 121 for now. He had 2 questions for the future: 1) how long is she going to need her pacemaker? Does she still need it? When can we take it out? & 2) Will her mitral valve need any type of repair or replacement in the future? Right now it's functioning really well and growing with her and the hope is that it will continue to do that. But he said "I don't have a crystal ball so I can't see into the future by I'm very optomistic". Only time will tell. We went over her list of medications...all 4 of them (woo hoo!) and he asked if the only heart med she was on was asprin and I said yes. He said "who would've thought that ever would've been the case? Not me". I said "probably not many people.". He then said that Molly is going to have a whole bunch of cardiologists scratching their heads for many years to come because they never thought she would have looked so great and be so healthy. Just another reason we are doing the walk for Children's Hospital because none of this would've been possible without them! So over all it was a great visit aside from her meltdown. We go back in September and at that time she'll have another echo. In the meantime we are going to protect that heart like we have been doing and enjoying the summer!! Kerry

Busy..busy

Molly has been keeping busy and keeping us busy. We had her birthday party on May 6th and it was great. Our day started at 5am. Molly woke up on her own. I wanted her to get up at 6am anyway so she would be ready for a nap at 11am before her big bash at 1pm. She was in a great mood and very cooperative. As people started to show up she became more clingy to me and didn't want me to put her down until her cousin showed up then she was fine. She loved playing with him and I was so glad that he was there so I could give my arm a break for a few minutes. The cake was donated from a company called Icing Smiles. They work with kids that have complex medical needs. I guess that would be Molly :) They put us in touch with a baker in our area. The cake was provided by Cakes by Erin in Haverhill. They did an amazing job!

We could probably have a Mickey Mouse Clubhouse theme every year but while I still have a say in her life, I'll pick the theme with some of her influence of course. So we did Strawberry Shortcake. It probably wasn't the best idea because it's almost impossible to find Strawberry Shortcake things.

Molly got a lot of great gifts and I'm happy that she has some new, more age appropriate toys. She was starting to outgrow some of the toys that she had which makes me so happy because that means she's making forward progress! Now that she's a big girl and 2 years old she can face forward in the car. Of course I took a picture of her facing forward :)

Thank you to everyone that came! Fast forward a few days...Molly decided to stop sleeping at night. She started waking up around 1am and staying up until 4am. That doesn't work for me since I wasn't going to bed until midnight. I would just fall asleep when she would wake up. I don't want her to "cry it out" because Jay has to get up for work in the morning so I try to run into her room as fast as possible. And if I did let her cry she would just send herself into a downward spiral and it would take her forever to calm down. She wants to be rocked back to sleep so that's what I do but when I put her down in her crib she was waking back up. At that point she was wide awake and ready to start her day. I tried everything. I tried rocking her, patting her bum, singing, shutting the light off, bringing her downstairs to the living room. The only thing that worked...TV. I hate doing it because then she stays awake but nothing else would work. Once she fell back to sleep she would wake up around 8:30am. She was in a great mood. I don't know how. I can tell you that I was not. Saturday I decided to keep her up all day to see if that would work. I wasn't going to let her take a nap so I decided to take her to the park, the mall and grocery shopping. Well, it worked. She didn't fall asleep but she did still wake up that night. She was up from 2am-5am. UGH!

Mother's Day was kind of tough. I was so so so so tired. When I'm tired I'm not fun to be around. We ran some errands and came home, set up Molly's water table that she got for her birthday and spent the afternoon on the deck. It was all that I had wanted to do and I'm so happy that we did. She had a great time and was so happy and that's what it's all about.

SHE FINALLY SLEEPS!!!!!!!!!

Even though Molly's sleeping has been all over the place she continues to amaze us. She has been doing so much better getting up on her hands and knees and getting around. She has been picking up baby puffs and yogurt drops, putting them in her mouth, chewing them and swallowing them. She has done this every day for about 4 or 5 days so I'm confident to say that she's transitioning to table food..finally!!!!! When she was playing at her water table she was standing independently for about 20 minutes. She's just the most amazing little person I have ever met! Now I just hope she sleeps! Kerry

Happy Birthday to my love!

On this day, 2 years ago at 10:35am I had no idea that I would be meeting my hero. Molly was born very big (thank goodness for c-sections) and very blue. She was whisked away so fast. Jay got to hold her long enough to take 2 pictures and they grabbed her from him so they could intubate her and stabilize her. It wasn’t until the next day that I got to hold her for the first time. Little did I know that this would be one of 2 times that I would get to hold her for many many months. I will never forget the day that Molly was born. I wasn’t nervous at all. I wanted her out because I had been in pain for so long and I was ready to meet her. I was so big and so uncomfortable. We had been through so much with this pregnancy and I was ready for it to be over and begin the healing and fixing of this little chunky baby. But at the same time I wanted her to stay inside forever because we had no idea what our life was going to be like and I felt like I could protect her as long as she was inside of me. We arrived at the hospital and everything moved pretty fast. They took me back around 10am while Jay got dressed. There were so many doctors and nurses waiting for Molly. I was so sick. I threw up during the entire surgery. At 10:35 Molly arrived. Even though she was blue she was so beautiful. She had so much hair and she was so loud. I was so happy to hear that cry. It was the only time we would hear that cry for over a year. I was in recovery for 19 hours because I had some issues. I remember Jay telling me that they were waiting for a bed to open up at Children’s Hospital because the hospital that was supposed to take care of her wasn’t equipped and she was so much worse off than they had thought. They wheeled me over to see her after a few hours. I only stayed with her for a few minutes. There were so many machines but it didn’t bother me because she was alive and doing OK. She was still my baby and I was so happy to have her. Four days later I was finally able to see Molly again. We left Tufts and headed over to Children’s. I got my parent badge with an expiration date of 2 weeks. About 20 more badges, countless procedures and scares and 8 months under our belt we had our baby in our care. Two years later we have the cutest, happiest, most stubborn little girl. She is still behind developmentally but I don’t even care. Not in the least bit. Each week she is doing something new. And like always it’s on her terms. She’ll do it when she’s ready. I’m not pushing her to do anything that she isn’t ready for. I’m just so happy to have her with us today. We’re not sure of what our future holds but no one knows their future. Even with the healthiest of kids or people you don’t know what tomorrow brings so why would we? We just know that we make the most of every second we have with her. We try to give her the best life possible and never want or need for anything. We are doing a pretty good job of it because I went out looking to get her something for her birthday and couldn’t figure out one thing to buy her. Two years ago I didn’t know what Mickey Mouse Clubhouse was and never watched an episode of Dora the Explorer. Strawberry Shortcake was just a childhood memory. And now not only do I know the theme songs by heart but I also know the episodes word for word. My life is now cartoons. I couldn’t tell you what is going on in the world. I have zero knowledge of current events. I’ve experienced enough sadness so I’m better off thinking that life is talking mice and a little town called Berry Bity City. She may not walk or talk yet but she is the most loved and cared for little girl that I know and for now that’s all that matters. In one year she started rolling on her belly, then rolling over, sitting up unassisted, was decannulated, overcame a few bugs, few hospital stays, started standing, started eating and drinking by mouth and most recently went from laying down to sitting up and most importantly makes me laugh every single day which is the hardest task of all! .I’ve just never met anyone like her and probably never will again. We are constantly thanking Children’s Hospital, the doctors and nurses but really we need to give all of the credit to her. She did it. She has come this far. She has overcome all of the hurdles. She continued to fight when we didn’t think she had any fight left to give. Or as they like to say in the hospital, she didn’t have any “reserve”. I think it’s pretty safe to say that she has reserve now! She works so hard every single day on things that come so naturally to other kids. I don’t know why we were dealt this hand but I wouldn’t trade it for anything. I love this girl more than I can ever express in words but I will show her every single day of her life! Happy Birthday to my little chickie!

Last year's birthday photo!