The Miracle Began 3 Years Ago Today...

Three years ago today was the most difficult and emotional day of our life. We had no idea what the future held for our family and all we had was hope. We handed our 6 week old baby over to one of the most amazing and talented men I have ever come across in my life. Dr. Emani was getting ready to fix Molly’s broken heart. Her heart was stopped, her body was cooled and the miracle began. Molly had already fought so hard in such a short period of time and now we were asking her to fight the biggest fight of her life. We didn’t know if she had it in her but we hoped. Giving up and losing this battle was never an option for the 3 of us. Jay & I never discussed “what if she doesn’t make it” because we knew that she would never give up. We knew that she was in the greatest hands of all and this was what she needed and where she needed to be.

We arrived at the hospital around 6:30am on June 25, 2010. We joked to keep the mood light. Then everyone started to arrive and prep her to go downstairs. I could feel a lump in my throat, knots in my stomach and my heart started to race. I started getting scared and tried to fight back tears.  We stepped back and watched them get her ready and answered any last minute questions they may have had. They started wheeling her out of her room and we followed with tears in our eyes, sobbing the entire way down. We walked her down to the OR and kissed her goodbye, knowing that could’ve been the last time we saw her eyes open. Dr. Emani was our only hope for a life with our baby.  We sat in the waiting room with our parents for over 8 hours waiting to hear that she was OK. She was done. She was alive. We received vague updates from the OR nurse…she’s on bypass, the incision has been made, she’s off bypass, etc. Nothing concrete. We had no idea how the surgery was going, how she was doing. Finally, we saw Dr. Emani walking towards us. We were trying to read his expression as he walked towards us but he just looked exhausted. She had made it out of surgery and her chest was left open. She was very very sick and needed to be put on bypass early. He went over everything he did to her heart but never gave us a prognosis and we didn’t want one. We would just have to wait and see how she did and that’s what we did. We were able to go up and see her in about a half hour or so. We didn’t allow any visitors while her chest was open. We didn’t think anyone needed to see her like that and we didn’t want to risk her passing any germs to her while she was so critical. We didn’t even take a picture of her while her chest was open. I know some people do but it’s not anything I ever care to see again in my life time. The next 24-48 hours were critical. She did OK during the critical period but had a very difficult time recovering. The road was long, hard and very dark.  She was having huge blood pressure swings, very high heart rate, etc. One of the sutures had given way on her mitral valve which is what we had feared from doing this surgery too soon but we didn’t have a choice. This is what she needed. She ended up back in the OR 2 weeks later to have her mitral valve repaired and have a pacemaker implanted.

The next 6 months were so difficult. They were exhausting, emotional, financially draining, physically impossible but we made it through and are better, more appreciative people because of it. We cherish every single day that we have with Molly and we never dreamed that she would be as healthy and happy as she is today. We know that we will probably see the inside of the CICU again one day but we are not in a hurry to get there and I know Molly feels the same way. We are grateful for our experience but are so much happier that it’s behind us. We know that without Dr. Emani, the CICU doctors and our friends that were once only a nurse to us, Molly wouldn’t be as healthy as she is right at this moment. When we do the NStar Walk for Boston Children’s Hospital, our goal is to raise $750 so that we can become Miracle Makers when in fact the true Miracle Makers are the ones behind the doors of Children’s Hospital. Without them, I don’t know where we would be but we are beyond grateful for all that they do for us, for Molly and for every other little one that they treat. Not every outcome is a positive one but even if they can give a parent 10 days with their baby or child, that’s 10 more days than they would have had and that means the world to a family. So here we are, 3 years later and loving every second of our life together. Sure times are tough but the good outweigh the bad and we love that little more than we could ever love anything. Every day is a celebration but days like today are reminders, reality checks, of how life could have been. It’s a reminder of what we have been through and what we may go through again one day. We don’t wish days along anymore. We live in the moment and are slowly learning to plan for the future again. Everything that we have been through has made us appreciate our life, and of course Molly, that much more. It is so heartwarming to see her grow, learn and just be a happy kid! Thank you for always being a part of our journey. We would not have made it this far without your words of encouragement, shoulder to cry on or your love for our family! 

                          The night before her 1st Open Heart Surgery

                                 The day of her 2nd Open Heart Surgery

                                                     A week ago!

Molly continues to amaze us. She is starting to put sounds together that resemble words. She says "ba" for ball, "co" for cow, "at" for cat. Then of course "uh oh" and "OK". She knows most animals from the basic cat and dog to rooster, gazelle and giraffe. She is also starting to learn shapes. So far she knows circle, square and triangle. We still struggle with colors but that will come in time.She can count to five on her fingers too. We are making progress..slowly but surely. We will get there.

We had an appointment with the orthopedic doctor yesterday and it went well. Any time a doctor, nurse or therapist reads her history they think they are walking into a child that is much worse than what she looks like. They are always shocked to see that she looks like a "healthy" kid. The doctor was very nice and sang Wheels on the Bus during the entire appointment. He did his exam and watched her walk. He said that she looks great. She has great head control, great posture, good trunk strength and she's strong. He was sort of on the fence about giving her braces and considered her a mild case. So he leaned towards giving them to her. She will be fitted at the rehab facility and they will make them. We should have them in about 2 weeks. From there she will hopefully learn to walk correctly and increase the amount of time during the day that she will tolerate them. The hope is she will only need them for a year or two. Maybe less, maybe more depending on her needs. We will go back at the end of next month for a follow up and see how she is progressing. The doctor couldn't say enough great things about the rehab facility and told me how lucky we were to be there so that made me feel better too.

We attended the NStar Walk this past weekend and we had such a great time. We don't get out too much, especially with our friends so it was great to be surrounded by all of the people that care about us and of course, Molly. Together we raised over $6500. We really can't thank everyone enough who helped us to give back. Molly is still benefiting from the great care given by Children's Hospital Boston and she always will. They were ranked #1 in cardiology and cardiac surgery for the 5th year in a row and that is exactly why we continue to give back!

We attended a funeral this morning for Jay's great aunt. It was Molly's first time in a church...no electronics or entertainment so it made us nervous to bring her. She was well behaved for the most part. She signed that she wanted a book so I gave her the hymn book until it became silent and she ripped one of the pages. That was the end of that. Every time the woman finished singing she would clap for her. That had to make the woman feel good because I bet they don't clap for her every day. I don't know if we will be going back any time soon but now we know she will tolerate it just don't give her the books.

We have another meeting with the school tomorrow. This time it's with the school nurse. We have to write up a medical plan. The director didn't think she needed one because "she looks so healthy" and I said I understand that she looks good but she has outstanding medical issues and we will have a medical plan. So we go back tomorrow. She also starts pool therapy tomorrow. I'm a little nervous about how she will react to going in a pool without me but like everything else we need to get the first one behind us then I will be fine.
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I think that's it for now. We have had a lot going on and I have a horrible memory so I can't remember it all but that's the important stuff!

I hope everyone has a great Father's Day!