Five Years Full of Ups and Downs

Five years ago today was the scariest day of my life. I thought I was prepared for what was about to unfold but I had no idea. My emotions were in check. I was confident this is what needed to be done. Molly was sick and there was no turning back. I held it together pretty well...until they came to get her. At that point it hit me that this could be the last time I see my baby alive. And that is when I lost it. I didn't want to cry. I wanted to walk her down to the OR with confidence but it all went out the window. I was scared and so sick to my stomach. I wasn't prepared for any of this. This isn't what I had imagine my life was going to be. I never knew fear like this. I was desperate for prayers even though at that point I had lost any bit of faith I had had because why would I be dealt this hand? Why was I picked to know this life? Did I believe in miracles? Not up to this point I didn't.

We gathered our things and with tears in our eyes we walked Molly down to the OR with her nurse, anesthesiologists and respiratory therapist. It is a day and feeling I will never forget. As I type this I have a lump in my throat. We went as far as the OR doors. We gave her a kiss. She was wheeled to the left and we went to the right. We met up with our parents and that is where we stayed for the next 8 hours. Updates were vague but our fear and anxiety was very real. I couldn't even tell you what we did to past the day but I can tell you that the look on the surgeons face when he came out to talk to us was not a pleasant one. He was tired and not 100% hopeful. He explained what he did and why she was placed on bypass early. He told us that her chest was left open and it was very touch and go for awhile. She was stable but critical. Stable and critical?! How are those words being used to describe MY baby? Those are words used on the news or in the movies. Not about someone I know personally. But critical she was. We went up to see her but we didn't allow anyone else. No one needed to see her chest open. We were so afraid that she would catch something and she was already so so fragile. The next two weeks were a nightmare and I know this because there are no pictures during this period. Her chest was left open for 8 days. She just wouldn't tolerate it being closed. She had a very tough time recovering and they couldn't figure out why. They had a hard time figuring out how to pace her with the external pacemaker. One night, around 2am,  we received a call that we should come down. She wasn't doing well. Her heart rate was 200. We rushed down there so sick to our stomach. Begging out loud not to lose her and for her to hang in there until we got there. By the time we got there they had stabilized her. After many tests it was decided that just two short weeks after her first open heart surgery she needed a second one to repair her mitral valve and implant a pacemaker. I wasn't as nervous going into this one and I'm not really sure why because we were told that if this didn't work they didn't know what else they could try but I was more certain this was going to be it. I didn't have any reason to believe that but I just did. We did it all over again two weeks later. Except this time when her surgeon came out he seemed much happier. Her chest was closed, he actually cracked a smile and we all took a giant sigh of relief. She was still critical and her journey at Children's was far from over. We still had months and months and months to go before we would be able to take our baby home. There were still countless procedures ahead of us but we had no idea at that time.

Fast forward 5 years and this is never what I thought our life would be like. In all of the days spent at Children's, I never thought we would have a smart, trach and g tube free preschooler. She has come so far. She has gone from 22 meds to 3. She still has a pacemaker but no longer relies on it. We went from bi-monthly cardiology appointments to every 9 months. Her trach and g tube were removed. She walks and runs like everyone else. She is smart and sassy. Sweet and brave. Of course, she struggles with some things but we are working on all of it and I am confident that she is going to do amazing things in life. Five years ago I didn't believe in miracles but after our journey and all that she has been through, how can I not? Five years ago I didn't know why I was dealt this hand and now I know why. Molly was brought into my life to show me what it means to be brave and to show me all of the good in the world. To show me what a miracle looks like. To show me that there is so much more to life than hanging out, going to the movies, going on vacations. She has shown me the meaning of life and I wouldn't have it any other way. She means everything to us and I want her to always know that! <3 I can't wait to update in another 5 years!

Happiest of Birthdays To My Sweet Girl!

As we walked through the doors of Tufts Medical Center on May 4, 2010 we thought we were as prepared as we could be. We had a complete diagnosis (so we thought). We knew she would be blue when she was born (no pink fingers and toes for this little lady). We thought we were going to take her home for 3-4 months so she could gain weight and strength before her first open heart surgery (and we couldn't have been more wrong). The truth is we had no idea what was about to unfold. I wish I could go back 5 years and talk to me then. Tell myself all of the ups and downs, highs and lows that were about to happen over the next so many months. I would tell myself that I would get through it all and that the outcome in 5 years was going to be the most amazing and rewarding gift I could ever receive.

Molly was born on May 4, 2010 at 10:35am weighing 10 lbs. 5 oz and was 21" long. She was born with an ASD, VSD, CAVC defect, Interrupted IVC, Total Anomalous Pulmonary Venous Return (TAPVR), Dextrocardia, Midline liver, right sided stomach, Polysplenia and Malrotated Intestines. What does all of that mean? It means we had one sick little girl on our hands and the hospital that delivered her was in no way able to handle the care she needed. So on May 5, 2010 she was transferred to Boston Children's Hospital and her journey there began. Molly's first car ride wasn't her ride home. It was an ambulance ride across town in the hopes of saving her life. Over the next 8 months we witnessed more sad moments than happy moments. We watched people exit our lives. Some of our closest friends became the nurses that took care of Molly. How could they not be? They were taking care of the most important person in our lives. Molly scared us in ways we never even knew was possible. To this day, I still get sick driving to Children's because of the memories I will never be able to forget no matter how hard I try. But I wouldn't have it any other way if it means Molly will never remember any of what she went through during the months leading up to her original discharge on January 4, 2011!

Over the last 5 years this little girl has overcome so much. She had her trach & g tube removed so much faster than we ever would have thought! She has handled every illness pretty well (knocking on wood and hoping I don't jinx anything). She is now on to annual cardiology visits which is a big jump from every 3 weeks when we first came home! She is only on 3 medications which is down from 22 when she first came home. We now only see cardiology, dental, orthopedic, psychiatry and ophthamology for specialists. She has been in some form of therapy, whether it's Early Intervention or outpatient therapy at NE Rehab, for almost 4 years and she NEVER complains about going...definitely not as much as I do! She will be entering her 3rd and final year of preschool in the fall. She LOVES school and she loves to learn. She is learning and it has definitely helped a tremendous amount with her speech. She has blood draws without crying. She has a pain tolerance higher than both of her parents combined. She is smart and sassy. Sweet and stubborn. Courageous and Beautiful. She is my absolute favorite person and I would do anything for her...we both would. My life may be completely different than it was on May 3, 2010 but it is so much better than I ever could have imagined. I never knew I could love someone the way I love her and I hope she always knows it! Everything we do or say is for her. We are doing our best to give her the life she deserves.
I hope she will read this one day and know just how much she means to us.


We celebrated her birthday yesterday and to see her jumping in the bounce houses with her friends, running around and keeping up with all of the other heart healthy kids was so amazing!

Happiest of Birthdays to the sweetest little girl I know!

Good Busy!

Molly is a pretty busy little lady. She doesn't have a whole lot of extra time to do fun things. Although I guess school and therapy is fun for her. I just don't know how long this lifestyle is going to continue to be fun for her. I'm not going to lie. I worry about her growing up and resenting me for never finding the time to do dance or gymnastics, music lessons or any other fun thing a kid her age does. I just always hope that she knows I made these choices because I think it's what is best for her. I keep telling the moms at therapy that I think she needs a break...we need a break. She has some for of therapy every week, usually multiple times a week since we brought her home from the hospital at 8 months old. She used to love going to therapy but most days now when we are driving there she says "all done Christine and Heather". So badly I want to say we are taking a month off but I don't want her to regress. She is making such great progress and I can't take the risk. Once she's there she's fine and has so much fun. I think it just becomes too much at times. By the time Thursday rolls around we are at the end of the week and she has 2 hours worth of therapy and she's spent and so am I. Aside from being "all done" she is doing great. Her therapists are so happy with her progress. I see more than they do for obvious reasons. She reaches her goals every week with PT. We are now working on putting 4 word sentences together in speech and making her existing words more clear. She tends to leave the last letter off of some words. She is also doing pretty good in OT. We are working on her pencil grasp, midline crossing and strengthening her left hand. She can dress herself and her self feeding has really improved. On the way to school or therapy we always play a game in the car. The other day I went through the alphabet and she had to give me one word that began with each letter and she did it. She even gave me words that weren't the basic word you would give. I thought when I got to Q she would have said "queen" but she said "quail". We are so proud of how far she has come and how smart she is. I know most of this is stuff she should have done already but it's stuff we didn't know if she would ever do. 

She has also developed an attitude. I don't know where it came from (ah-hem). She likes to yell at us now whens he doesn't get her away. Stomps her feet and repeats "no". Throws things when she doesn't get her way. We were at the grocery store today and she wasn't listening so I told her she was going to have to sit in the shopping cart and she screams "No Way Jose". I wanted to laugh but at the same time I wanted to climb in a hole. It does make me happy to see her doing typical kid things but she also makes me want to pull my hair out by the end of most days. My sweet girl is slipping away and turing into a 15 year old teenager. I hope it's a phase and she will come back around. She is pretty well behaved for the most part. 

She had a follow up appointment with the eye doctor to make sure her glasses are working....again! And they are working for now. The doctor said that she wouldn't do anything now but that's not to say she'll never need surgery. All we can do is keep hoping the glasses do the trick!

We have put her anxiety to the test lately. We went to see Frozen on Ice. I was pretty nervous that she wasn't going to tolerate it. Her psychiatrist keeps telling us to talk about it ahead of time. That isn't working. She stresses about it so much by the time we get to where ever we are going. So I tried not telling her or being vague about where we are going (because she always wants to know where we are going). And this time I think it worked. She had the time of her life! 

We also went to the mall which is always a no-go for her. We usually walk in, get her glasses fixed and walk out. This time I went in down the opposite end of the mall and went into Build A Bear. She was OK once we walked in and she saw that it was OK. We built a bear for my aunt that was having surgery. Then we went to have her glasses fixed (this time I broke them...oops). On the way back we had her ears pierced. It's something we have wanted to do for a long time. Obviously we couldn't do it when she was born. I asked her before I did it if she wanted earrings and she said yes so we did it. She cried for a second and hasn't bothered with them since then!

We went to a birthday party at Jay's cousin's house. A place she had never been to. We had no idea how she would react when Anna & Elsa walked in but she was in her glory and had a blast!

Today we went to a Chuck E Cheese like birthday party. I made the mistake of telling her ahead of time and showing her the place online. She kept saying "all gone Mouse" because she thought we were going to Chuck E Cheese. She obsessed about it the whole way there but once we stepped inside her anxiety went out the window and she had so much fun.

Some times I just stare at her in amazement at how far she has come and think about how literally unbelievable she is. I hope she always knows how amazing she is.

Each year we usually do the NStar Walk for Boston Children's Hospital. This year we have decided to do something different. My friends are helping me to do something I've wanted to do for a few years. Books are a huge part of Molly's life. They always have been. She would rather read a book than play with a toy. So in honor of Molly's 5th Birthday (holy smokes I can't even believe she's going to be 5 in less than 2 months) we are having a book drive for the kids recovering in the CICU at Boston Children's Hospital. I remember how a small gesture could turn a dark day around when we were in there and if Molly's story and a small gift can brighten someone's day and give them some hope then that would make my day complete. We are also collecting gift cards ($5, $10 or any amount really) for the nurses. We are putting together goodie bags as a thank for all that they have done for Molly and every other kid that rolls through those doors. Our goal is to get 50 gift cards. If you would like to help and brighten someone's day please email me or send me a Facebook message for my address. My email is kleary923@gmail.com.

I hope everyone has stayed healthy this winter! 

Much love,

The Leary's

She Fights With Every Heart Beat!

I have been struggling with this post. The biggest reason is because I'm just so tired. My job has become pretty demanding and I've had to run Molly here, there and every where. She has a pretty busy schedule. She goes to school Monday - Thursday mornings. Then she goes to therapy Monday, Thursday and Friday. Every other Friday she also goes to a psychiatrist which will hopefully be coming to an end soon. I guess I'll start there. 

Molly has now seen a psychiatrist two times. She has given me some things to try when we out in what is a stressful situation for her. The problem is that we are so busy with everything else that we haven't had a chance to try it out. We are taking her to see Frozen on Ice next month and that will definitely trigger it so we will see if it will help. I was talking to another mom at therapy about her problem and she suggested not mentioning where we are going ahead of time because she may be getting herself so worked up by the time we get there that she becomes overly stimulated and loses control. Makes sense and we are going to try that. We had to go to therapy yesterday and I went a different way because I was afraid that back roads would be covered in snow. The entire way there she asked over and over again if we were going to see Christine and Heather. I could tell she was getting anxious and she didn't believe me until we turned down the street of the hospital. Then she was fine. I really wish I knew what triggered this, what is going on in the brilliant mind of hers when she gets worked up. If she could only tell me...

She had her appointment with ENT (ears, nose and throat). I was so worked up about this appointment. We don't have any answers but the doctor wasn't concerned. He checked her ears, nose and throat. I thought for sure he was going to find something wrong with her nose. one of her nostrils is smaller than the other. She had a breathing tube in one of her nostrils for 5 months so I thought for sure there would be damage but no. It looks great. We were concerned about her baseline congestion. She has always been this way and we don't know why. Her lungs sound great and it's definitely all upper airway. He thinks it's one of two things. Of course the second thing ends in surgery. He thinks that her nose isn't creating enough moisture. It gets clogged, causing post nasal drip, causing her congestion. We are going to try saline drops for 6 months. If that doesn't work we are going to take a look at her adenoids. He said they may be becoming inflamed, causing them to rub together, creating mucous and causing her congestion. In that case they will need to come out. Hoping of course that is not the case. It's hard to accept that decision because it doesn't effect her. She coughs, she clears. She sats 100%. Who knows!

She has been wearing her glasses for a little over a month and her eyes look great. Her head tilting has stopped which is the biggest sign that she is struggling to see. We will go back in March to see if they glasses are working.

She is doing great in therapy! Her speech therapist is thrilled with her progress. She said that she loves working with her because she can see her progress from one session to the next. Her therapist is great and we love her. She has really helped us a lot. She gives me some good things to work on with her and she is so great with Molly. PT is going well. She jumped off of a 12" step the other day. This is huge for her! I've even noticed a change in the way she runs. She's been lifting her knees higher and has picked up speed :) OT...well, I don't know. I don't have much to report. I'm not loving it. I don't see her benefiting from it. She dresses herself, she is getting better with eating. She does struggle with a grasping a pen but I don't know if that would require weekly visits. I do that think that we are both burnt out. She has been telling me that she's "all done" on the way there each week. She has had therapy every week, multiple times a week for 3 years. She has no extra curricular activities. I want to put her in dance or gymnastics but she's so spent from her week that I don't know if she could do it on the weekend. I really don't want her to look back on these times when she's older and resent me from making her do all this therapy with nothing fun. I know she needs it but she needs to be a kid too. I've really been struggling with this a lot lately. I just want her to be happy and she is happy at therapy but we (the three of us) have fought so hard to give her a happy, healthy and "normal" life and I question that that is what we are giving her. Nothing give me more pleasure than seeing her so happy. I love going to therapy because those other moms get what I'm feeling. They can help talk me through it. They get it. They get why I feel this way. I just wish they could tell me what to do. 

She has been enjoying all of the snow that we've had. She loves laying in it, throwing herself in it, throwing it, feeling it. She is so happy and that is what matters most!