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

Molly's Make A Wish Trip!

Sorry for the lack of update on our trip but our entire house has been sick since we got back but here it is in full detail!

Our flight was scheduled to leave at 2pm on Friday, October 4th. The limo picked us up at 11:30 to take us to the airport. We arrived at the airport and the stress began. We each had a suit case, we each had a carry on, we had Molly's stroller and car seat as well as a small cooler because some of her meds need to be refrigerated. Luckily one of the workers at the airport helped us with our bags. Going through security was not fun. Jay had to take care of the bags, stroller and suit case while I waited with Molly because she couldn't go through the regular metal detector due to her pacemaker. So we had to wait for a supervisor to come over and walk Molly around while I went through and met her on the other side. We gathered all of our things and headed to the terminal. We didn't have to wait very long before we could bored. Luckily, Molly recently developed an obsession with airplanes so she was OK with looking out the window at the plane and ate as many Cheez Its as she wanted to keep her happy. We boarded the plane. Jay held Molly while I disinfected her seat, the tray table and arms of the chair. We also brought a blanket to cover the seat. She was so great the entire flight. She just ate her Cheez Its and played her iPad. Jay did the same thing for that matter :

                                              On the plane and ready to go!


We arrived in Orlando 2 1/2 hours later. We got our rental car and headed to Give Kids the World and checked in. They gave Molly a Mickey Mouse doll and went over some basics. Jay had to go back later on that night for orientation and to get our park tickets, etc. We went to our room, dropped our stuff and went to eat. At this point it was almost 7pm. We were tired and starving. We ate fast because Jay had to be at orientation at 7:45. While he was there I headed to Walmart with Molly to pick up a few things for the week. By the time we got back to the room we were ready to drop. Jay & I came up with a plan for the next day, tucked Molly into bed and followed soon behind her.

                                  Our arrival picture at Give Kids the World

Day 1 - Universal Studios: We know there isn't a whole lot for kids at Universal Studios but we wanted to ease her into the experience. They had a Nick Jr parade that we thought she would like and a Barney show (she LOVES Barney). Plus there was a Curious George water park so there was things she could do. Everything I read before going to FL said that the characters won't approach you because they know that some kids are afraid UNLESS you are wearing a Make A Wish Button. As soon as we walked in Curious George walked up to her. She is petrified of characters. She screamed "bye" to him and we were off. It was 90 degrees that day. It was soooo hot compared to the 65 degress we had just left in Massachusetts. We headed to Barney to see what time the show started. She played in the play area for a few minutes then Barney came out. I took her to see him. I really thought she would've been OK but I couldn't have been more wrong. She gave Barney the same screaming bye she gave to Curious George. We stayed to watch the show and she was OK with that. After the Barney show we watched an animal show. She loves animals so we figured she would be happy and we were right...PHEW! After the animal show they let us stay and meet the host and one of the stars of the show. Supposedly he is the dog from Men In Black. Whether he is or not I don't know but it was fun. Jay's feet were being ripped apart by his shoes so he had to keep stopping to tape his feet up. It just wasn't a good day. I took her into the sprinkler park to cool off but she wasn't having it. We grabbed some lunch and she wouldn't eat and she wasn't really drinking but she cooled off and we regrouped. We walked around a bit more, watched the parade and she fell asleep for a few minutes. She wasn't having any part of this day so we headed back to the hotel to cool off, make a plan for the next day and rest up.

Day 2 - Sea World: We decided to do something that we knew that Molly would love (and to take a break from characters). The night before I had looked online to find out what we were going to do while we were at Sea World..if there were any rides, animal feedings and show times. I made and itinerary to make it a little less hectic and it worked out. First stop was the sea lion show. Because we were with Make A Wish we got to sit up front at just about every show. It was pretty amazing. Molly loved the sea lion show. She was so happy which made us happy. After the sea lions were the dolphins which were my favorite and I think Molly's too. We also saw the Shamu show which was pretty amazing. Molly also got to feed the sea rays, sharks and dolphins. We were able to get up close enough to touch the dolphins. She was a little hesitant about that part. It was a fantastic day and probably our new favorite park in FL!

                                            Feeding the sharks

                                          Feeding the dolphins!!

Day 3 - Hollywood Studios: Jay & I have never been a fan of this park but we decided to go because they had some stuff there for Molly. They had a Disney Jr. Live show that we thought she would like, Toy Story ride, Little Mermaid ride. It was supposed to rain so we figured it would be a quick trip and a good day to go and it was. We saw the shows and Molly loved the rides that they had. It ended up pouring and we got soaked but when it's 90 degrees with 1000 percent humidity you dry off pretty quick. Our favorite show was Beauty & the Beast. Molly was so engrossed. It was a great day!

Day 4 - Magic Kingdom: I had imagined this day for so long. I knew she was going to love it. She loves rides and there was plenty of them to entertain her. I mapped out our day the night before. I should've paid closer attention to what some things were but I was just looking for toddler friendly attractions. We headed to Fantasyland. On our way we walked past a princess ride...so we thought so we went in. It was a Cinderella meet and greet. We didn't know if we should turn and run or give it a try so we tried it. Molly was skeptical at first but ended up being OK. We also met Sleeping Beauty. Now that we had these under our belt we figured we were good to go with the princesses. We spent the day riding rides and trying to stay cool. Jay & I took turns riding the rides with her. This way we could also take pictures and not miss a photo op. It was such a great day. It was every thing I had hoped it would be.

Day 5 - Animal Kingdom: This was our final day in FL and we figured Animal Kingdom would be a good park to save for last since it was the smallest and we were very tired. We watched the Lion King show and Jay was picked to take part in it. They also asked if Molly wanted to but there was no way she would allow them to take her away from me to dance with Timon. We did the other attractions that they had there and were on our way. We made a quick stop to Downtown Disney and headed back to the hotel to pack up and get ready for our journey home the next day.

This trip was the experience of a lifetime. We had a blast and it's something we will never forget. We have plenty of pictures to show Molly and lots of stories to share with her when she's old enough to remember. She couldn't have been better behaved the entire trip! We are so lucky to have her in our lives! The day after we came home Molly came down with a cold but once again she handled it just fine. She had a low grade fever that we treated with Tylenol, a cough and runny nose that she passed along to me and Jay. I ended up with conjunctivitis in both eyes, a virus and an ear infection. Jay had the same virus and conjunctivitis. But we are getting back to normal now. Molly has finished her first week of school with no tears shed at drop off. It makes dropping her off so much easier! I hope everyone is staying healthy!

Kerry

Disney World, Here We Come!

Tomorrow we will wake up and begin the day we have been waiting for for so long. Tomorrow our nerves will be shot, anxiety levels will be high, emotions will be flowing. Tomorrow the limo will arrive at 11:30am to pick us up and bring us to the airport. Tomorrow we will board the plane at 2pm for the very first time as a family. Tomorrow we will arrive in Orlando, FL at 5pm for the vacation that we never thought would happen.

As excited as we are to spend the next 7 days/6 nights at the happiest place on earth, we are also reminded why we are there. We are there because almost 3 ½ years ago the bravest, strongest, most courageous baby entered our lives. She fought harder than anyone we know. She fought so that one day she would be able to live a long and happy life. She fought so that one day she would be able to go to Disney World and now that day has come. While on this trip we will be reminded that Make A Wish has sent us to Disney World because Molly does, in fact, have a life threatening illness. As great as she is at making us forget that, it’s our truth. But we are not going to let it consume us on this trip. We are going to give her the best time. She will get what she wants, do what she wants, eat what she wants. It’s all about her, which isn’t much different from her every day life : ) We got the OK to go on all age appropriate rides with no restrictions and that is what we are going to do. Lots of pictures will be taken and even more memories will be made. There was a time that we didn’t know if something like this would ever happen for her and now it has! There was a time we never dreamed of making this type of plan for our future. There was a time when we wouldn’t think of leaving the state, nevermind getting on a plane and flying so far away from Boston Children’s Hospital. But now we can and that means so much more to us than the destination. She is healthy enough to do all of these things and then some. She is the most amazing little girl, we are going to have an amazing time and she is going to do amazing things with her life! The next week is going to be a week long celebration of Molly, her life, her heart, her journey and her will to live a healthy and happy life! We can’t wait to share this experience with everyone once we come back!