NStar Walk & Cardiology Visit

It’s no secret that Molly is the most important person in our life. We have devoted every spare second and every ounce of energy towards her health and well being. It’s also no secret how much Boston Children’s Hospital means to us for good reason.

One day back in May 2010 Jay and I were on our way to the cafeteria at Children’s and we saw advertisements on the floor for the NStar Walk benefitting Boston Children’s Hospital. At the time we had no idea what it was and we honestly didn’t care at the time because we had so much going on with Molly. But once we realized what it was we said if she ever made it home we would do the walk.  In June 2012 we registered for our first NStar walk and were able to raise $4500 because of the generosity of so many people that love her. 

Last year was our second year. We had a fantastic group of people that worked so hard to help us give back. And with it we were able to raise $6500!!!!!!!! To say we were excited is an understatement. We had such a great day. So many memories were made and that’s what the majority of our life is all about. 

We have registered once again and on June 8, 2014 we will be participating in the walk. It’s one of our favorite days of the year. We are hoping to have most of our team back again this year and then some. So if you are interested in walking with us we would love to have you! If you would like to help us raise money but you can’t make the walk you can become a virtual walker. I’m so proud of all of our friends and family that have helped us raise money for Children’s. It’s not something they have to do but they do it because they love us and our family. I’m also proud of everyone that has ever made a donation to Children’s for whatever reason! We are so grateful to all of you!

If you would like to help us exceed our goal by making a donation you can do so by clicking on the link. Just remember that no donation is too small and every amount is greatly appreciated!

Click here to donate 

We are also going up to another big appointment. Molly has a cardiology and EP appointment on Tuesday. She will be seen in Boston by cardiology for an echo & EKG. She will then be seen by EP so we can discuss the long term plan for her pacemaker. Her cardiology wants to find out if we are going to keep it in until the battery dies or if they want to remove. Jay and I vote to keep it in until the battery runs out. I’ve been stressing about this appointment like I always too. It has been on my mind since Christmas. I have no reason to be nervous really because her echo is always unchanged but I’m just waiting for the time that he tells us it has gotten worse. She looks fantastic and there aren’t any outward signs that it should be different but I just want to put the entire day behind us. I feel like I can’t make any plans until this appointment is over. I will update it once it’s over and I can hopefully breathe a sigh of relief!

I hope everyone is staying warm this winter!

Kerry

Heart Parent

Before Molly came along our life was so different. We would go out all of the time. Whether it was to dinner or to a movie, to the mall or just wander around Target and buy things we didn't need. Go fishing (Jay, not me), go our for drinks after work (that would be me!), whatever it is we were always doing something. We had a decent amount of friends that we loved spending time with. Some were closer friends than others but never the less they were still our friends. Friends we though we would have for a life time. Then Molly came along. All of our priorities changed like they would with any child. Except, she consumed much more of our time. We would go to work and dash out of there when it was time to go to rush to the hospital to spend as much time as our very sick baby as we could before we had to go home and do it all over again the next day. While we were in the hospital we weren't thinking about what our friends were doing because we only had one thing on our mind...getting our daughter well enough to come home. Then we were discharged and our life became even more crazy. We were basically housebound with the exception of doctors appointments and hospital visits. As time went on and Molly became more stable and a lot more healthy we were able to take a breath and look around for the first time in a few years and realized "hey, where did everyone go?". The texts and Facebook messages and emails became fewer then eventually stopped, with the exception of the only true friends we ever had. We don't go to the movies anymore, unless it's one that Molly would go to. We don't go out to dinner anymore. I haven't seen the inside of a bar in about 5 years...even if I did I'd probably fall asleep after one drink. Jay's fishing trips are almost non-existent and now when we go to Target, our shopping cart is 90% stuff for Molly. While all of this is OK it becomes a lonely life. I am beyond thrilled to have the few friends I do have but it still makes me sad at times that everyone else moved on without us...all because we were fighting for our daughter's life then to keep her healthy. I'm not sure if it's because they can't relate to us anymore or what. But now that Molly's back in school I have been talking to some of the other mom's while we are waiting to pick our kids up. I think they are curious about Molly and that is probably why they started talking to me and that's OK. I don't mind sharing her story. It makes me feel better to let them know why she is delayed so they're not just guessing why. One mom in particular invited us over for a play date. I hate that term, play date. What ever happened to just asking if Molly could come over and play? Either way...I accepted. It would be great to start making some new friends. Friends that don't care that my kid spent much of her life in and out of a hospital and accept her for who she is and the amazing little girl that she is becoming. I don't want Molly to be treated differently because I feel like when she is being treated differently I am too and it's not a fun feeling. So by this mom asking if we wanted to come over it made me feel accepted once again. I am not a huggy person but I kinda wanted to hug her for asking me!

This is only a smidge of what we go through as a heart parent but this is the stuff that we can deal with!

Thank you for listening to my rant : )

Kerry

Thank you, 2013!

This year has been full of highs and lows, just like anyone else’s life I’m sure. Lucky for us the highs outweigh the lows. We thought we were going to escape another year without a hospital admission but that wasn’t the case. However, Molly recovered quickly and handled everything better than I did. We also made another trip to the OR. We have yet to have a year where Molly didn’t end up in the operating room. We are hoping that 2014 will be the year! Molly was also diagnosed with A Pattern Esotropia which is an eye condition and requires her to wear glasses. Luckily, the glasses help and we were able to avoid a surgery…at least in the immediate future. We lost our little friend, Miracle Ryker, who was also born with Heterotaxy Syndrome. Though his time here was short he touched our lives and his passing affected us deeply. We hope that his mom & dad, Rachel and Jason, find comfort in there 4 other kids in the new year! 

With the bad comes the good. We celebrated Molly’s 3^rd birthday in May! She wasn’t really having it and wasn’t in a great mood but we still made the best of it. It’s a celebration of more than just her birthday but a celebration of her life and all that she has overcome! She truly is a miracle. She also transitioned out of Early Intervention and into outpatient therapy in May. I was very excited about this change and it turns out I had a good reason to be. Molly has made great progress since starting therapy. Her therapists love her and are so happy with all of the progress she has made. When she started therapy in June she was still crawling around.  Six months later she walks like she’s been doing it all of her life. We still struggle with speech but again she has come so far. She is saying words and her vocabulary is huge. We know she still has a lot of work to do but we are confident that she will catch up in no time!

June is my second favorite time of year because that is when we participate in the NStar walk for Boston Children’s Hospital. This year we raised $6500!!!!!! We couldn’t have done it without all of the donations from our friends and family and even some strangers. The whole experience of walking for Children’s Hospital is so exciting, emotional and meaningful to us. We love that we have started this tradition with Molly and we hope she will continue to do it into her adult years. It feels great to give back and I can’t wait to do it again in 2014!

September was also an exciting month because Molly was able to have her g tube successfully removed! I really didn’t have any expectations of when it was going to come out when we had it placed but I did not think it was going to be that fast, especially because feeding was so stressful and difficult for her. But once again she overcame the odds and proved me wrong.

October! What a fun month for us as we headed on our Make A Wish trip to Disney World. This was a once in a life time experience that Jay & I will treasure forever. Sure, we will be able to go back but the experience the three of us had will never be replicated. We had the time of our lives and if you are ever looking to donate to a charity, Make A Wish is another amazing organization. They provide dreams to children with life threatening illnesses. It allows the child and their families a time away from their life to forget about doctors appointments, needles, testing, etc. It’s something we will always be grateful for and we will never forget!

We had a wonderful year and it’s all because of this little girl that has taught us so much and brought so much joy into our lives. Our lives will never be the same but they are so much better because of one little girl that was born with a broken heart and an anatomy that still keeps many scratching their heads! It is going to be tough topping this year but we are going to have a great time trying!

Happy New Year to all!

HAPPY HOLIDAYS!

I have a love hate relationship with this time of year. I love it for all of the obvious reasons…the decorations, the lights, the joy on Molly’s face when she sees a snowman or Santa (not the real thing of course), the excitement that she brings to this holiday season and most importantly that we have a happy & healthy (for the most part) 3 ½ year old to share another Christmas with.

This time of year brings back so many memories that I would rather forget about and I really try so hard to put them away but it’s a feeling that I get when I drive by the farm up the street because that’s where we were when I miscarried. I will never be able to shake the feeling that I get when I think about this time of year 4 years ago when we found out that there was something wrong with the baby’s heart. Our crazy journey started this time 4 years ago. We were on top of the world. We had tried so hard to get pregnant and here we were finding out that we were having a girl. Eight days after we found out that the baby was a girl, I received a phone call from the OBGYN telling me we had to get into Boston for a level II ultrasound ASAP. A few days before Christmas we found out that the baby did not have Down’s Syndrome but the heart defects had been confirmed. We were devastated. Now we were supposed to celebrate this Christmas and every Christmas to come remembering how we felt at that moment . The weeks and months to follow were full of doctors appointments, testing, consults, tears, stress and very little laughter.  Last night I let myself think about that time and it made me so sad. But today is a different day. I am reminded how extremely lucky we are. Molly is doing better than most people every expected. Of course she had a rough start but she will never remember any of it. She is a great kid, well behaved, very little trouble, so smart, beautiful inside and out, so funny and entertaining but most importantly she is HEALTHY and that is the greatest Christmas gift of all. I have never considered myself materialistic but gifts are no longer important to me. All that is important is the health and happiness of the person that has forever changed my life. I have said it a million times but I know our journey could’ve went a completely different way but Molly is sitting across from me, watching the same episode of Sofia the First that she has watched 50 million times this week all because of Boston Children’s Hospital, all of the doctors and nurses and surgeons. It makes me beyond happy to know that they do perform miracles and Molly is living proof. Unfortunately, there are several families that are celebrating this holiday without their little ones at home, whether they are in the hospital or have gone to heaven. I think about all of them every single day. My heart breaks for them but I hope they take comfort in everyone that they are surrounded by this holiday. Make sure you appreciate all that you receive for the holidays and don’t take one second of the season for granted!

Much Love & Happy Holidays!

                            Playing outside with her cousin this past weekend!!

                                     Molly's first Christmas spent at Children's!

HAPPY THANKSGIVING!

Our life now seems so simple compared to the last 3 Thanksgiving holidays and I couldn't be happier so I guess that would be the first thing that I am thankful for. I know that our life is always going to have a hospital stay in the future...sometimes it will be the near future and sometimes we won't know when it will be. We haven't gone one year without a hospital stay since Molly was born. Some of the admissions were for good reasons like having her trach and g tube removed and others were for illnesses and surgeries. No matter what the reason for the stay we are thankful that we always walk out of the front doors with our little girl.

Even though I will never be able to repay Children's Hospital for saving Molly's life and giving us the greatest gift I will always be able to show them how grateful we are by taking part in the NStar walk every year. This year we were able to raise over $6500. That would not have been possible without the wonderful team of walkers we had as well as all of the donations by Molly's supporters. I am thankful for each dollar raised and each and every person that helps us give back every year! So thank you so much for always supporting us and helping us give back to a cause that means the world to us!

Of course, I am thankful for Boston Children's Hospital and all it's staff. There isn't a day that goes by that I don't think about that hospital, the staff and the patients past and present. I can't explain how thankful I am for all that they have done for my family. When I was pregnant with Molly the plan was to keep her at Tufts and all her surgeries would've been there. I think that her being more sick than expected was a blessing in disguise. I am so grateful that they had enough sense to send her to Children's and not try to save her themselves. There is a reason that BCH is the #1 hospital in the country and that reason is kids like Molly. They make the impossible possible. They give life to babies and kids when no one else can. I will forever be grateful to them for all that they continue to do for Molly to this day!

A new thing that I'm thankful for this year and every day really is Northeast Rehab and three amazing therapists that have brought Molly so far since she has started there in May. Brittany is her speech therapist. I love her so much. She is just so amazing, funny and caring. Elissa and Bobby work together as a team. Elissa is the therapist and Bobby is an assistant PT. They work with Molly in the pool and on land. They have so many great ideas for helping Molly get to where she needs to be. I can't say enough great things about them!

Jay & I definitely have our differences. Nothing has come easy for us but we work so hard for all that we have. It's not the best of the best, we don't have fancy cars or a giant house. We don't shop at high end stores or make millions of dollars. But we have all that we need and Molly is well taken care of. We are experts on our daughter both inside and out. We always have her best interest at heart. We are the best parents for her and she is our entire world. We haven't been out just the two of us in about 2 years. We are the only one who knows what the other has been through. We know what it's like to witness a miracle. We know what it's like to love something so much and have it almost taken away. We know what it's like to get a call in the middle of the night and not know if your baby is still going to be alive when you get there. But through it all we have remained close. We argue, we laugh, we work, we love, we don't ever sleep and we have very little time for fun but we have learned to become great parents and friends and I am so so thankful for him!

I am thankful to have supportive families. Molly loves her cousins and they love her. I'm sure they won't want to bother with her in a few years because they will become too cool but for now she enjoys all of the attention they give her. We don't see our parents often enough but we always talk to them and keep in touch. Our siblings are busy with their lives but they do mean everything to us.

And of course I am thankful for my little side kick! She has shown me what strength and determination really looks like. Nothing ever gets her down. She enjoys every second of life, when she probably doesn't need to. She defies the odds every single day. To look at Molly she looks like a typical little toddler...small but typical : ) She is so smart and amazes everyone that knows her. I know she's my daughter and I brag all the time but I am the proudest mom. Not only is she beautiful on the outside but she is a miracle on the inside. She scares the hell out of us at times but I am so so thankful to be her mom!!!!!!!

Don't take one second for granted with anyone that you love. You don't know what the future holds. I hope everyone has a Happy & HEALTHY Thanksgiving! Thank you for always being a part of our journey!

                                            Molly's First Thanksgiving


Kerry

Home Away From Home

These past few days have been anything but fun. They were full of highs and lows. It all started Friday. Molly's baseline is slightly congested so when she's getting sick it's a little hard to tell. The tell tale sign is she will usually only eat yogurt for her meals but she was eating fine, in a great mood and everything was normal but she was developing a cough that was more than her baseline. She woke up Saturday morning and felt warm so I checked her temperature and she was warm...101.02, so I decided to take her to the pediatrician. I really do not like taking her when I know her pediatrician isn't there because her baseline for everything isn't like ours. They don't know what they are listening to when they listen to her heart and lungs. It's not their fault, she's just different. But her temperature was higher than we felt comfortable with so I took her in. We saw the NP and she listened to her, asked me if one side of her lungs sounds different than the other and went to read the doctors notes on how she sounds when she's not sick. She told me that she feared Molly had pneumonia. She gave me the option to go home on an antibiotic or go for a chest xray. I chose the chest xray. So we headed to Boston Children's Hospital where she had a chest xray. The on call doctor called me while we were there and told me it was negative for pneumonia but to give her Tylenol and start her back up on her inhalers every 4 hours so that's what we did. I was so relieved. We went home and chilled out. She took a nap which she NEVER does. Later that night we checked her temperature again and she was very hot...103+ so we took her to the emergency room. When we are rushing to get to Children's it seems like the longest ride ever. They checked her temp, oxygen and took us right back. Since pneumonia was ruled out earlier in the day they started her on ibuprofen which we don't like to give since she is already on Asprin but in this case it worked and it worked well. They said she probably just has a virus and it would need time. We were discharged from the emergency dept around 1am. We made it home around 2am.

Sunday was a normal day. I stayed home with Molly while Jay ran some errands. She was have a good day considering she wasn't feeling good. She fell asleep on the couch pretty early and while she was asleep I hooked her up to the O2 monitor and her oxygen was a little low. We watched it continue to drop and made the decision to go back to the emergency department. She also wasn't drinking that well and she only had one wet diaper all day so we figured she would probably need some IV fluids (we were definitely missing the g tube that day). They took us right in again. Her oxygen was 93 and her temp was 103.2. This time we didn't even wait for a doctor. He came right in. Since pneumonia was ruled out they thought maybe a UTI. They also wanted to check her for RSV, the flu, check her white cell count and to see if there was any other bacterial infection. They also wanted to repeat her chest xray to see if anything had changed in 24 hours. And then the torture began. She was not happy one bit when they did the culture for the UTI. Since she isn't potty trained yet they had to use a catheter. Then they had to place an IV...cardiac/Heterotaxy kid+dehydration does not equal a fun time. They finally got the IV, started her on fluids and antibiotics. The cardiac fellow came in and listened to her..for about the 1000th person to listen to her. She said that she heard something in her lungs and she was pretty sure it was pneumonia despite what the xray said the day before. Whether it was pneumonia or not she was being treated as if she had it.

We were finally admitted and sent up to the good ole 8th floor. It was late when we were admitted and Molly fell asleep pretty quick once they were done getting her settled. We were up a lot through the night. At one point the nurse came in and woke her up because he was trying to put a nasal cannula on her for oxygen. Her oxygen level dropped to 80. Once he woke her up she would go back up to the 90s. She ripped that cannula off her head like the crazy person she is. So no oxygen for her. Of course now I couldn't go back to sleep because I was obsessing over her numbers. All day yesterday she was great. She was playing, ate 2 yogurts, was drinking better. She was starting to fall asleep around the time Jay was coming in. She sat up and I looked at her hand. Her fingers were blue, her hand was hard and cold. We figured the IV blew so we brought the nurse in because she had fluids going into the IV and it had been going into her hand instead of the vein. Her hand was so puffy and sore. Once they got the IV out it started to drain a little bit. She had a cardiac resident, 2 nurses, the IV team and 3 plastic surgeons look at that hand. Good thing we're not the only ones who over react : ) It's already back to normal.

By Monday night she was just about back to herself. Her numbers all looked good, she hadn't had Tylenol since 6:30 in the morning, she was playing and laughing and even starting to eat a little bit. Jay had left and Molly fell asleep. I thought it was going to be a quiet night to myself but I was wrong but this time I was happy to be wrong. Molly woke up around 9:30 and was up until after 1am. She was being a goof ball, playing, laughing at her TV shows and I couldn't have been happier to have my little girl back. Once she finally fell asleep her oxygen sat around 90ish but never went below. The next morning during rounds I was so happy to see that the attending was someone that knew us. He was a fellow when Molly was in the CICU. He saw no reason to keep her any longer and knew that if she had to come back we would bring her but didn't think we would have to return any time soon. He was so happy with all of her progress and how great she is doing. We were discharged around 1pm yesterday. We made a stop off at the pharmacy to pick up her antibiotic that she will be on 3 times a day for 9 days because she is being treated as if she has pneumonia. Luckily she is really good about taking medicine and we never have to fight her to do it.

                                            She's ready to go home now!


Our visit to Children's wasn't all bad. While we were hanging out on one of the days (they are all a blur) her cardiac surgeon, Dr. Emani, walked by and was surprised to see us so he came in and was truly amazed at how great Molly is doing and how fantastic she looks. It has been a very long time since she has seen him. There were many days that he came to check on her with such sadness on his face so to see him happy made me want to give him a big hug, tell him I love him and how he is a true miracle maker. If anyone else had operated on her, who knows if she would be here today. He said that he finally got to see the rock star live and in concert! How happy and proud he must've have been to turn a little baby clinging on to life into this normal, healthy little girl! Truly amazing!

A nurse from the Cardiac ICU came to our door. She had never taken care of Molly but when you are there for so long, everyone knows who you are. She had heard we were there and wanted to stop by and see her and she too was amazed. She had a student with her and said that she felt it was important for the students to see how great the outcomes of some of the kids can be. She came back about 20 minutes later with 10 more students and asked if it was OK if they chatted about Molly, her history and original diagnosis and of course I said yes. I never ever get sick of hearing how wonderful she is doing, especially from all of the people that saw her once upon a time.

One of the social workers also came by. She said she was going to reach out to me because they are starting a parent to parent mentoring program. They put parents of the kids in the CICU in touch with parents that were once there. They give advice, tell their story and help them with any situation they face. If a child was in need of a gtube or trach and the parent was struggling with the decision we could help them and tell them about our situation. The doctors explain it all to them but it's different coming from a parent. I agreed. I couldn't have agreed fast enough. Any time I can help someone that is or was in our position makes me so happy. This life is anything but fair. It gets to be very lonely at times. Especially when a lot of people have moved on without you. As much as I don't like going to Children's when Molly is sick, it really does feel like home.

Thank you for all of the continued love and support. Without you, we would be nothing!

Kerry