What a CHD means to me...

Before Molly came into our lives I had no idea what a Congenital Heart Defect was. I had never heard of it. I had no idea what it meant. I had no idea that it affected so many innocent lives. I had no idea that is was a huge community of sad, stressed, depressed, yet amazingly strong families. I had never imagined that 3 letters would mean so much!

CHD stands for Congenital Heart Defect but to our family it stands for so much more. It means going through a pregnancy feeling scared and alone. Not being able to enjoy the excitement of all the new things you receive from your baby shower because you never know if your baby will come home to enjoy any of it. Not looking forward to the delivery because you can no longer keep your baby safe and alive. Handing your brand new baby over to a surgeon and never again seeing their chest without a scar down the center of it. It means relying on perfect strangers to care for your baby…change diapers, console her, give her medicine, bathe her, dress her because she isn’t stable enough for you to do any of it. It means going weeks, maybe even months without being able to hold your baby. It means knowing your doctors and nurses life stories because you spend more time with them than with anyone else. It means that some of those same doctors and nurses are now some of your favorite people, and even your friend. It means watching your child come so close to death. It means walking into a hospital to see your baby, holding  your breath the entire way to her room because you don’t know what the picture is on the other side of the door. It means living in constant fear that one day she may take a turn and travel down a road you never want to visit again. It means protecting her from germs. It means living from echo to echo and watching with one eye as she gets weighed in praying silently that she hasn’t lost weight. It means watching her kick and scream during echos, EKGs and height and weight checks. It means being able to read an echocardiogram or an EKG and knowing what all the of the sounds  and alarms of a CICU mean. It means knowing what it feels like to see so many babies die and watching the parents go through such a devastating time, wishing you could be there to give them a hug because they are now like family. It means she doesn’t shed a tear during blood draws because she has had it done so many times that she doesn’t even care anymore. It means no birthday parties or indoor play gyms in the winter months. It means that you walk around with bleeding and cracked hands in the winter from constantly washing and sanitizing them because you never want to pass anything along to the little one with a special heart. It means developmental delays and therapy. It means always standing out and being different. It means never knowing what the future will hold. It means having to tell her medical history for the 1 millionth time while trying to choke back tears. It means a common cold could mean a hospital admission. It means being able to function days on end without sleep because you are sitting at your child's bedside while she struggles to breathe. It means round the clock medication. It means watching your child go through withdrawals from all of the narcotics she has been on since birth. It means shedding more tears than you have ever cared to. It means making life and death decisions for your baby. It means feeling like not only does your child have a broken heart but you do too. It means feeling sorry for yourself except you are too busy with appointments and therapy to stop and think about why you are feeling so sad. It means giving all that you have so that she has the perfect life. It means giving her all that she wants and needs because you feel guilty for all that she has endured. It means crying your eyes out as you update a blog about what CHD means to me.

But more importantly it means  love, strength, compassion and hope. It means believing in miracles. It means celebrating every little triumph. It means knowing that every day really is a gift. It means knowing the importance of blood and organ donation. It means overcoming the odds. It means that Molly is 1 in 100 which means that we are not alone because 1 in 100 babies are born with some form of a cardiac defect every day.

CHD means so much more and I could go on and on. CHD means something different to every heart family and every heart baby is unique but they all share a common bond...they are all the strongest, most loved kids on the planet! Please help me to spread awareness and share Molly’s amazing journey!  

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! 

Last one of the Year!

In my last post I had mentioned Molly needed to go back to the eye doctor because we had noticed that she was tilting her head again to compensate for her vision. We went back last Monday. They are kind of stumped and I'm confused as to why because to me it makes perfect sense. They don't understand why she is tilting her head so much. They are trying to prove that her head tilting has nothing to do with her vision but it has everything to do with it. While we were there they put a patch on her eye and they were hoping we could just patch it and that would be the answer but she still tilted her head. They put her in a mild prescription and she never tilted her head. They looked back through their notes and the last time we saw any head tilting was a year ago September when she wasn't wearing glasses so we are going back to glasses. The doctor said that she will probably need surgery in the future because her eyes are misaligned but for now we are going to stick with glasses until it's absolutely necessary. Her glasses should be in this week.

I had an appointment with a child psychologist today regarding Molly's anxiety issues. She didn't tell me anything I didn't already know but it was nice to have confirmation that we are doing all of the right things. I went through her medical history and developmental history (she will meet Molly on her next visit). I told her that I think the majority of the problem is that she can't tell me what is wrong and she said that is 100% correct. I also told her that I try to explain to her in great detail what we are going to do, who is going to be there, etc and she said that is exactly what I should be doing and I'm doing everything right. She seems to do better when it's the two of us and we can take our time and just focus on each other and not what is going on around us. She said that if we (Jay and I) start to get anxious she will feed off of that so we need to stay calm. She said that if she starts getting fussy, whining or crying we need to just ignore her. Don't talk about it or draw attention to it which is what I try to do anyway. As her speech improves, her anxiety level will go down and I hope that is the case. This doctor used to work in a hospital and she said that the way Molly behaves in new surroundings is so common among kids that have spent as much time in the hospital as she did/does. I said that it makes me so sad that she can't have fun at the places she should have fun at and she loves going to the doctors and therapy. She said that when she was developing and growing that she was always in the hospital, at the doctors or therapy so it's all she knows and it's completely "normal" that she reacts this way but as she gets older it should get better. She doesn't really understand why this happened all of a sudden and she can't make the connection to her anxiety because she isn't just anxious around big crowds or at loud places and it has nothing to do with people...it's on places. So she too is stumped. So Molly will meet her at the beginning of January. She doesn't think there is a whole lot she can do because they don't typically treat kids this young for this reason but she can give me some tools to use and hopefully teach Molly some things through play. Fingers crossed!

We were so focused on saving her life for so long that I never would have imagined all of these issues this far out. She has had to overcome so much more than open heart surgery and it just doesn't seem fair. She has had to overcome narcotics withdrawals, developmental delays, nightmares, fear of not knowing what was next, pain and now anxiety issues. We have got through it all and we will get through this too! But through it all she has remained the happiest little girl and I'm grateful for her today and every day. I hope everyone has a great holiday season and a Happy New Year!

Update

When will I ever learn? Anytime I go into one of Molly's doctors appointments with the "eh, this is an easy one attitude" it comes back to slap me in the face. I'm going to back track a few weeks.

I had asked for an OT evaluation at the rehab facility that she goes to for PT & Speech. She was evaluated and started services the following week. My reason for her getting OT services is because she has trouble with feeding herself. She eats fine...not gagging, swallowing, puking, choking. She has silent reflux and is on medication for that but to watch her you would never know. The only reason why we know she has silent reflux is because when her gtube was removed her GI took a look while he was in there and saw some redness. I just wanted some pointers on how I can get her to feed herself...if they had any tips or tricks. Of course the week before she started therapy she started feeding herself better than ever. I know it's just going to be time but I want to help her move along. She had her 2nd appointment on Friday and I left there wanted to cry because I was so mad. Molly's baseline is congested. She always has some kind of cough. Sometimes it sounds worse with the change in weather. If she goes from a hot climate to a cold climate she sounds more "junky". Well, her OT can not get past her junkiness. She is trying to figure out why she is congested. I have told her several times that it is all upper airway and that everyone (all of her doctors) are aware of it. She was asking me if she sees Pulmonology and I told her repeatedly no and that there isn't a need. She asked me if she ever had a chest X-ray and I refrained from the answer I really wanted to give and told her, "yes. She was in the Cardiac ICU for 8 months and received them daily". She was asking because she wanted to make sure that her lungs were fine and I said yes. Then she told me that she wanted her to have a swallow study because it's been a few years. There is no need for a swallow study. A swallow study would tell us why she wasn't eating and she is. I just want to know what to do to help her feed herself. My problem is often times when we meet a new doctor or at times a therapist they all want to be the one that "fixes" a problem and I hate that.

So Molly had a wellness visit with her pediatrician today. She is seen every 6 months instead of once a year. The first thing her pediatrician said to me was that she received a letter from the rehab facility requesting a swallow study. It took everything I had not to lose it. I explained the whole situation and her pediatrician agreed with me that her congestion is not related to her feeding but her congestion is concerning and we need to look into it. So we are going to make an appointment with ORL (a.k.a. Ears, Nose & Throat). Since her congestion seems to be coming from her nose or throat we don't know if she has some granulation tissue causing it or there is something going on in her nose since she had an ET tube down her nose for 5 months or something else.  Either way she is going to be seen and try to figure out the cause. I guess when we are discharged from a specialist we are never truly discharged.

She also asked me about her eyes because she noticed that she was tilting her head when she was looking. I told her that we had noticed her eyes getting worse over the past month. She has been tilting her head back more to compensate. I had just looked today to see when her next eye appointment was and it's not until March so I have to get her in sooner and most likely into a pair of glasses again.

My other concern is Molly's anxiety when she goes some place that she has never been. When we go to the doctors, Target, school or a place that she goes to often she is happy as can be. But if we go some place new her anxiety level is so high. She cries and whines the entire time we are there and we usually have to carry her. We have showed her pictures before we go, tell her where we are going and talk about it, tell her what it's going to be like and no luck. It doesn't matter if there is 1000 people there or 2 people. She does not handle it well and I think it's getting worse. She was never like this before and I don't know when it changed but it's been going on for a few years now. So I mentioned it to the pediatrician again and she agrees that something needs to happen. She suggested that we see a psychiatrist. I have an appointment in two weeks to meet with her while Molly's in school then she will meet with the both of us. It just makes me so sad that she should be able to go to these places and have fun like every other kid and she can't so hopefully the therapist can help us out. It may be a huge waste of time but it's worth a try.

Aside from these issues Molly is doing great. We have a parent teacher conference on Wednesday but I talk to her teacher just about every day. She is so happy with all of her progress. She said when she asks a question in class she usually asks Molly last if no one else gets it because she knows that Molly always knows the answer. I wish I could make the rest of her body function just as perfectly as that little brain of hers. We continue on with all of her therapy and are enjoying this holiday season. Molly HATES Santa with all she has but likes everything else that comes along with Christmas. She is totally content with not believing in Santa. I guess I won't be writing "To Molly From Santa" on presents this year...especially because she can read now. Ha ha!

Thank you for reading my winded update. I hope you all have a happy & healthy holiday season!

Kerry

                                           (From Thanksgiving day)

Long Overdue

Molly has been a busy little lady since my last post. I used to be so good at updating her blog but now that our biggest focus is her developmental needs there isn't a whole lot to update on on a regular basis.

Molly started her 2nd year of preschool last month and absolutely loves it. She never shed a tear and picked up right where she left off. Her teacher has noticed a great improvement in her social skills and speech. She is initiating more conversation, interacting with the kids and initiating play. I don't usually get to speak to her speech therapist and OT but I do get to speak to her PT (in school) and she just loves Molly. She worked with her last year and is happy to have her again this year. She said that she is one of the hardest working students that she works with and they always run out of time because she is willing to do everything this is asked of her and she has fun doing it. That makes me so happy to know that she doesn't have to drag her through her sessions. Her outpatient therapy is going well. She meets her PT goals every week and is making great progress. I'm not really sure how I'm feeling about her outpatient speech therapy. We had to say goodbye to our regular therapist. I just love her and she was so great with Molly. She showed excitement in her accomplishments and always gave me hope for future progress. I'm not getting that from the new people that she is working with but I'm hoping that will come in time.

She did have a dentist appointment and did so well. She just laid there and let the dentist do her thing. She didn't have any cavities but we were told that she will need braces when her permanent teeth come in. Her mouth is just so small and there isn't a whole lot of room in there. Ugh!

We also saw orthopedic for a follow up since discontinuing her braces. Her feet look great and they look even better since her appointment in August. They still turn in a bit but not nearly as bad as they were. He wants her to wear braces at night to bed since her arches haven't developed yet. I have been fighting to get those for over a month now!!!!!!!!

We also saw ophthalmology and that appointment went better than I expected. I thought they were going to give her a weaker prescription because her eye had over corrected but they discontinued the use of the glasses all together...for now. She is a little far sighted but it isn't anything that requires glasses right now. As she gets further along in school and starts reading she may need them but for now she doesn't need them and we are taking the good news and running with it!

Cardiology...the dreaded appointment. I don't know why I always dread it, like dread it to the point where I feel sick to my stomach, because it is always great. Everything is the same...mild regurgitation on the mitral valve and a tiny VSD. Her cardiologist is so thrilled with her. We don't have to go back until school is out and that is the longest we have ever gone in between cardiology visits. I don't like going that long because I like to know what is going on inside that little body.

Molly is really coming along. She is making huge strides with her speech. She loves to sing songs and we are thinking about signing her up for dance classes. There is a studio not far from where we live that has special needs dance classes so I'm going to call and speak to the teacher to see what she would suggest. She would love it! Last week we were in the book store and she was reading the words on the signs of the different sections...dinosaurs, animals, etc. Even when she is looking at her books she can read a fair amount of words in the books. She can also spell a decent amount of words. She is just so smart! I really don't have anyone to compare her to (and I don't want to compare her to anyone)but knowing what she has been through, where she was a year ago and what we were told to expect makes us even more proud of her.

One of the other things we are struggling with is going to new places with her. She does NOT like going anywhere she has never been before. She has anxiety, cries and wants to be carried the entire time we are there. She doesn't not like big crowds and is more content at the doctors office than something she should be enjoying. I'm not exaggerating. She has a wellness visit in December so I'm going to talk to her pediatrician about it again. We have always taken her out and have never kept her secluded (except during cold and flu season) and this is really out of no where. I'm at a loss so hopefully her dr can help us out.

Now that those appointments are behind us for now we are going to focus on Trick or Treating, the holidays and all of the other fun things we have coming up! We hope everyone is remaining happy and healthy!

Happy Halloween!!

Difficult Times

When a family loses a child I think to myself "how sad" but when a family loses a Child to CHD or Heterotaxy my heart breaks in half and I shed so many tears for the family while thinking "that could have been and still could be us".  Five years ago I never could have imagined crying for a child and family I have never met. But as you follow their journey you cry with them and celebrate with them as some of you have done for Molly.

About a year ago I completely removed myself from the Heterotaxy and CHD community for a few reasons but one of the biggest reasons was because the loss of so many kids took a toll on me. It became too much. I was sad all the time. I kept looking at Molly and wondering what was going on in that little body, always examining her lips, toes, fingers. Watching her breathing and obsessing about things I had learned stop monitoring on a daily basis. Once I removed myself from the community I had felt so much better but always felt bad for doing it because I wanted to give new families hope and share our story so that these families that were currently in the hospital wouldn't lose hope. Molly is our miracle and I wanted other families to know that miracles do happen. But I had to get back to baseline before I could do that again. I was enjoying Molly and stopped obsessing about her health...kinda. I was able to laugh and think. As time went on, Molly started school, we started our new normal, I felt good and felt like I wanted to get involved once again. My reason for getting involved was because I don't know where I belong. My friends that have kids can't relate and in turn I can't relate to their life. We try to give Molly a typical childhood but it will never be. We will always be nervous when she touches something in a public place, running to get Purell on her hands before she sticks them in her mouth. If she sniffles or coughs we immediately think "oh crap, here we go. I hope to God this doesn't lead to an admission". About 2 weeks ago Molly asked to go to bed. I brought her up to her bed and she was fussy and wanted go back down stairs which isn't her usual behavior. I sat her at the kitchen table, she coughed, gagged and did her throw up cry that I hadn't heard in over a year. I yelled to Jay to get a towel and we immediately panicked. If she was a typical kid...big deal if she throws up but to us it's a reminder that she has unrepaired, malrotated intestines and we would have to rush her to the ER. Even though she never threw up we slept horrible that night waiting to see what she was going to do. These are all things that no one can relate to unless you are the parent of a Heterotaxy child. So I decided to join the Heterotaxy Facebook group in hopes to connect to those moms because I felt lost and alone. I would give anything to have someone to talk to  that would know exactly how I feel.

Since becoming involved in this community again it has been tough. Over the last 2 weeks, 3 kids (on Heterotaxy kiddo & 2 CHD kiddos) have lost their lives to CHDs. When a little one loses their life to a CHD it hits our household hard. We are reminded that this is our reality. I look at Molly with tears in my eyes and become even more grateful that she is still with us. I'm not sure why we were lucky enough to bring her home from the hospital after all that she had been through and have her the healthiest she has ever been but I'm not questioning it. I am SO grateful to have her alive and well, entering her 2nd year of preschool and growing so much as a little girl both physically and mentally. She is my absolute favorite person and I would give anything to protect her as would any parent. I give her what she wants, do what she wants and soak up every second we have together because I feel guilty for what she has been through and what she will always go through. She goes to doctors appointments, therapy and blood draws without ever complaining. Sadly she is more comfortable at the doctors than she is at an amusement park. It is kind of  heart breaking but definitely makes life a tad easier.

To say I'm sad that Molly is starting school in one week is an understatement. I love having her around and I hate that this summer is coming to an end. I'm not ready to send her back to school but knowing she loves it...well, it doesn't make it any easier but she will have a great time and that is all that matters!!! She does have 3 appointments coming up...eyes, dental and cardiology. Three of the worst ones. I try not to think about it because I will drive myself nuts. I just can't wait for these to be over and put them behind us for another so many months!

I hope you all had a wonderful summer and I will update after her appointments. Please keep these families in your thoughts and prayers. They need them more now than ever before!

Kerry

It's almost over

Life has been so busy lately. We never get to stop and catch our breath but it's been a good busy. A good busy for us is anything that is not hospital life. We spend our free time on the weekend at the zoo because Molly loves animals more than anything else. I'm so happy that we bought a season pass.

We participated in the NStar Walk for Boston Children's Hospital yesterday. It was tough getting donations this year but we still managed to raise $5900!!!!!!!!!!! This is going to be our last year walking for Children's because there is a lot that goes into doing this walk. We are grateful for all that they have done and we donate each month on our own. During the walk yesterday, my friends and I were trying to figure out another way to give back to the cardiac unit so we will figure something else out because I always want them to know how grateful I am for giving Molly something I would never have been able to do. We walked 7 miles. I had no idea what 7 miles was going to be like. It was hot, long and it was tough staying hydrated. As the walk went on some of us were lagging behind and others (Jay pulling Molly in the wagon) were pretty far ahead. We had a lot of laughs, a lot of complaining about how hot and tired we were, how are feet and legs were hurting. We just kept thinking about the reason we were doing it and that is what helped us to finish. I ended up getting pretty sick after it was over. I didn't drink enough and had heat exhaustion. Guess Molly gets her hatred for the heat from me. We still had a great time and I was so happy that the people that did show up were there. They mean more to us than they will ever know!!! I can't thank everyone enough who donated. I know that nobody is rich and money you work hard for what you have so the fact that you were able to contribute means so much to us!!!

I had Molly's IEP meeting this morning. I was all fired up going into it because I had received her reports from PT & OT as well as her academic report last week. It had stated that she knew 22 out of 26 uppercase letters and 25 out of 26 lowercase letters, 6 out of 8 shapes & 8 out of 10 numbers. Does that sound great? Yes but it wasn't accurate and that bothered me. She knows all of her letters, numbers and shapes. What's the big deal? She knows most of them. The big deal is that she struggles in every aspect of her life and I want her to get the credit that she deserves when she does something right. I had all of my questions and goals written down for her and I asked them all. The teacher gave her take on everything. Molly has made a tremendous amount of progress this year, she is a joy to have in class, she has trouble transitioning but is doing so much better. She is so smart and is socializing better and better. She is starting to have a back and forth conversation with her peers and teacher. I questioned how she was being tested because she definitely knows her letters and numbers and she said that she's "easily distracted" and she's tested in a classroom setting so it's hard for her to focus. If you know that she knows them all but didn't tell you all of them at the time of the test, you can't give her credit?!

Next was speech. I didn't get this report ahead of time but I was prepared. I had asked her speech therapist what types of words we were currently working on and she said "cvc1cvc2" which would be words like "people, bubble" and she is progressing really fast and can say just about all of them in this section. So at the meeting today I asked what type of words they were working on and she said "CV & CVC" which we haven't worked on in therapy in months. I was surprised when she said this. CVC words are words like "dog, cat". I told her where we were and she didn't think she should be working on those yet. I sit in on every one of Molly's outpatient speech sessions and she is definitely where she needs to be so I didn't agree with this woman today...AT ALL! How is she going to progress if she is being held back? She is fearful of regression over the summer because she was out of school for a week and she thought she had taken a step back. Her one hour of speech a week isn't what is going to prevent her from regressing. She also said that she is easily distracted but can focus in the speech setting because it's just the two of them but if someone opens the door she looks to see who it is. Who doesn't do that? I do that! She had recommended speech therapy during the summer through school. Not happening. I told her that she gets outpatient therapy for speech and we will continue with that during the summer.

OT was next and I really liked this lady. She gave Molly so much credit and understood where I was coming from. I tried to explain to everyone that Molly is 4 on paper only. She can not be compared to other 4 year olds because that isn't fair to her. I find myself doing it all the time. Like when I see the kids running around on the playground and talking to each. But that isn't her and she shouldn't be treated that way. OT was very happy with all of the progress she has made. She gave me a list of things to continue to work on over the summer and didn't think she needed additional therapy over the summer.

PT wasn't there which I thought was kind of ridiculous. She asked if I had any concerns with the PT report and of course I did. It says that she needs hand held assistance going up and down stairs. We do not help her go up and down stairs and haven't for a very long time. They said that she is easily distracted and they do it for safety purposes. Show me a child that isn't easily distracted. I also asked if she more easily distracted than other kids and they said yes. Well, Molly wasn't around kids for a very long time so this is a whole new world for her and she's very curious about everything going on around her. I didn't sign the IEP because I'm going to have her outpatient therapists read it.

They suggested summer school for Molly and I wasn't having any part of that. It's only for 16 days, it would be at a different school with all kids that have delays. Her teacher didn't think she would benefit from it because by the time she transitioned it would be over. I was told that everyone loves her and even people that don't know any kids names know Molly. Someone stopped me in the hall and told me how much she loves her. She said when she hears the name "Molly Leary" she puts her hand on her heart and says "awww". She told me that she is the sweetest little girl and everyone just loves working with her. It was nice to hear how much she is loved. She is going to repeat the three year old program next year and will have the same teacher which will be good for her. But I know one thing...we are both ready for this school year to be over!!!!!!!!!!!!! 9 more days!

I really dreaded this meeting. Every aspect of her life is a battle and I didn't want her education to be that way too. I'm more than just a mom to Molly. I'm her advocate and her voice. I just have to always hope I'm making the right decisions and doing the right thing for her. Hopefully I did her proud today and she will have a great year in school next year!

Thanks for reading my long winded update!

Kerry

Happy Birthday to Molly and So Much More!

We recently celebrated Molly's 4th birthday! This time of year is always such an emotional time because I'm almost forced to reflect on all that we have been through...all that she has been through. Not that I don't want to think about it because it has made her who she is today but it's a reminder of how hard her life has been and despite all that she has been through she acts like nothing ever happened. She is a well behaved, happy little girl! 

She had the best birthday. It couldn't have gone any better. We were nervous about the weather the entire week leading up to it because we planned to have it outside. The weather cooperated for the most part. It was such a great day just watching her run around and play, interacting with everyone that talked to her. Just another reason why I am proud to be her mom. She received so many wonderful gifts and she loves them all!!! She has already mastered some of the educational toys that she received. We got her a puzzle where you match the word to the picture and she can do every single one...such a smart cookie! We worked on singing "Happy Birthday" to her the whole week leading up to it because she was traumatized by that song from a birthday party we went to at Chuck E Cheese. Luckily she let us sing it...about 30 times. I would've sang it 300 times if that's what she wanted. I wish I could go back 4 years and tell myself then what her life would be like in 4 years. It would have made our journey so much easier knowing how our life would have turned out. I probably wouldn't have believed it. I want to thank everyone that had a part in this special day, whether you came to her party, wished her a happy birthday or sent her a gift. I can't tell you how happy it makes us to have people still care after all of this time!

We didn't have time to catch our breath from her birthday party and we were back to appointments, therapy and every day life. She had an Endocrine appointment that following Friday. I was hoping that it would be our final appointment but you just never know with this girl. For once I was right. The endocrinologist said there was no reason to go back so that she can tell me she looks great. The hope is that her thyroid had taken a beating from how sick she was in the beginning of her life and her thyroid levels were effected by a drug she was on for her heart called Amiodarone. She has been stable and Amiodarone free for a very long time, her thyroid levels have been great for a few years and we were discharged from Endocrine. She did have to have labs pulled just to be sure but they don't effect her at all. She was chatting about the animals on the walls while they were looking for a vein, which is no easy task. They took the blood and she was still talking about the lion and the elephant. She will have to have her thyroid levels checked once a year but that can be done by her pediatrician.

The following Monday we had an appointment with ophthalmology. I dread this appointment almost as much as I dread cardiology. Maybe it's because I don't know much about the eye and with her heart I know what to look for. Maybe I'm just waiting for them to tell me that she is going to need surgery. Maybe it's because the doctor speaks so matter of factly and like it's not a big deal. I hate that! We found out that she has pretty close to perfect vision with her glasses on. One of her eyes is slightly worse than the other but her vision is 20/25. With the good always...ALWAYS...comes the not so good. The glasses have over corrected her eye and now it turns out slightly with her glasses on. When she has them off it turns in. She may need a weaker pair of glasses to help correct it. I'll take the weaker glasses over surgery any day! We are going to give it another 4 months then we are back for another visit and she will have her eyes dialated. Luckily this doesn't bother her either. There isn't much really that does. She loves going to the doctor. In fact, every time we get on the highway she asks if we are going to visit Dr. Rhodes, her cardiologist. She always needs to know where we are going when we get in the car and when I tell her we are going to the doctor she's thrilled...total opposite of me and almost every other person on the planet. I guess it's just where she feels comfortable. Unfortunately for her I am not hanging out in doctors offices to make her happy.

We have another appointment a week from today. This one is bright and early next Monday morning in Boston. It is with EP to discuss the long term plan for that little pacemaker of hers. I have about a million questions before we make a decision on what we are going to do. Right now we don't want it out. Unless this doctor can talk a good game and convince me it's the right thing to do I say keep it in! The reality of it is, it's a foreign object in her body and is an infection risk. We are concerned that if they take it out, that is when she will need it. Maybe it's just stuck in the CICU mind set. We have to get over it at some point. Or do we? That way have thinking has got us this far. I'm very nervous about this appointment and I'm trying not to think about it. I don't like being forced to make these decisions. Especially when it's not cut and dry. I don't like making decisions about elective procedures. I will update after her appointment.

We also had an appointment with orthopedic regarding her braces. He would like to see how she does out of them once school is out. So in July we will transition her from her braces to high top sneakers. Her ankles are still weak and that may just be how she will always be. She has fallen arches and we aren't sure if they are going to develop. If that is the case we will discuss long term plans in August. She is definitely more stable in them and walks completely different when she doesn't wear them so only time will tell...like always.

Overall everyone is thrilled with Molly and all of her progress from head to toe...literally. Ultimately the only important things that matter is that she is happy and healthy. She is such a joy to be around and brings so much happiness, perspective and hope to everyone that interacts with her. We are the proudest parents and couldn't have asked for a happier, more courageous little girl!

We are gearing up for the NStar Walk benefiting Boston Children's Hospital. We have less than a month to achieve our goal of $6500 and we are only 44% of the way there. It really doesn't matter if we meet the goal because any amount helps and that makes us so happy to be able to give them what they need since they have given us what we need. If you would like to help us get any closer to our goal you can click here and donate! We are incredibly grateful to everyone that has donated, wished us well or volunteered to walk. We love each and every person that has supported us on this journey and we will never be able to thank you enough for your kind words and donations!

NStar Walk Donations

Life is short so make the most of it. Don't take one second of your time with your kids for granted. There are so many people in our lives that would give anything to have their little ones back with them...even if only for a day.

Kerry