Catching up...

It's been awhile since I've updated and so much has been going on I'm not sure if I can remember it all...partly because I'm so sleep deprived so I guess I'll start there. Molly used to be the best sleeper and it makes me so sad (and so tired) that she is the total opposite now. We have tried everything to get her to sleep through the night again. Jay keeps telling me to hold her nap during the day but I guess for selfish reasons I didn't want to give up that hour and a half that I had to myself. But I did it and she was sleeping through the night. She did it for 3 nights in a row. Even though she was sleeping through the night I was not. I keep waiting for her to wake up. Last night she fell asleep at 6p, woke up a few times but went right back to sleep. Then 10p rolled around and she was up until 2a. She woke up again at 5:15a and I had to wake her up for the day at 7 because she had a doctors appointment. So we are all pretty tired today. I guess there's no answer and I've given up on sleep all together.

On September 9 Burlington had Municipal Day. The man that ran the even purchased a 40" flat screen TV and we raffled it off. All of the proceeds went to the Miles for Miracles marathon that Kristin Barber (the nurse that's running the marathon) is running. We ended up raising $1700 and we had a great time doing it. Molly was like a local celebrity. I was so happy to be able to do this. Any time we can give back to Children's Hospital makes us so happy.

My dad's work had company day at Canobie Lake and we went with him and my mother. We just never know how she's going to be. We have tried carnival rides before and she didn't like them but this day she loved them. It made me so happy to see her on a carnival ride like other kids her age. Of course we were careful. I had the Purell ready as Jay took her off of the ride. She had the best time and I think this day might be my favorite memory yet.

The following day was a reception for the Miracle Makers of the Nstar Walk that we did back in June for Children's Hospital Boston. Because Jay & I each raised over $750 and Molly raised over $500 we were invited to attend. It was at an apple orchard where they provided lunch, tshirts and of course apple picking. Did we have a great time? Umm...no. Molly was miserable the entire day. She did a complete 180 from the previous day. What we didn't know was it was the beginning of a very long week. She ended up with a stuffy nose and a cough. We were watching her temperature, O2 sats and her appetite. She never developed a fever and her O2 always stayed at 100%. She was always at the back of her mouth so we're not sure if it was a cold, her teeth or a combination of both. She missed early intervention all week and I had to cancel her play group for the week but she should be good to go this week.

We were also notified that Molly doesn't qualify for Synagis this year which isn't great news. We try so hard to prevent her from getting sick and the thought of her getting RSV scares us so much. I spoke to the pediatrician's office yesterday and they are going to try to get it approved through her secondary insurance but they told me they have never been able to get Synagis approved through Mass Health. If they don't approve it they will appeal it through our primary insurance and we'll have to pay the deductible which is $2,000 but each shot is $1,500 and she gets 5 of them in a season. If they don't approve the appeal then it will be a very long winter of me and Molly sitting in the house with no outside contact with germy, booger people. We have come too far to risk an admission now.

That brings us to today. Molly had a routine cardiology visit. She hadn't been seen since April and hasn't had an echo and EKG since January. The further apart the visits, the more nervous I get. I don't know why because it was drilled into us to always "look at the patient" and to look at her she looks fantastic. Nice and pink, growing, breathing perfect, etc. But I'm so afraid our luck is going to run out which is why I dread this appointment, well that and we are so afraid she's going to lose her sh*t and make it a very long appointment. We haven't been giving her the iPad so we can use it today and she would be happy to see it. Although we almost didn't have an iPad because Molly dropped it on the floor and smashed the glass. Jay took it to the Apple store and they gave us a new one for nothing..Phew! Close call! Back to the cardiology appoinment. The nurse knows us and knows us well. She came out to the waiting room and asked if we thought it was a good idea to do the echo first and we said yes. If she got weighed first it would've been over. She was fantastic through the echo, laughing and making noises, resting her feet on the echo techs leg like she was at home. She said that Molly is one of her most challenging patients to get images on because of how "different" her heart is. She was able to get the images pretty quick. The cardiologist came in to listen to her which she was happy and he said that she sounded great. She looked fantastic and no one ever would've thought this would've been the outcome for Molly. As much as I don't like the cardiology visits I do like getting his opinion because he has seen her on some pretty horrible days. It's just nice to hear how great she looks now. The EKG tech couldn't believe how great she looks and how big she's getting. Everyone in the office kept saying that she was like a different kid now. The cardiologist went over her echo. The pressures in her heart are normal. The function is great. Her heart is nice and strong. There is still mild leaking in the mitral valve and some mild narrowing. He said the narrowing is nothing to be concerned with right now but we are going to have to keep an eye on that valve. It is growing with her and the function is is fine. He thinks we will get her childhood out of that valve and who knows beyond that. No one knows what the future holds for that valve. It may not need any work but we're not going to worry about it right now. Just put it in the back of our minds with everything else we have to worry about. He was very happy with her and all of her progress which makes us happy. We have to go back in 6 months for another visit and a pacemaker check. So I have 5 months of no worrying about a cardiology visit.

I think I've covered everything for now. Thank you for continuing to care!

Kerry

She doesn't need me anymore...

Today was Molly's first day at her play group through early intervention. We obviously had some hesitations because we are crazy germ freaks (Jay is worse than me). But we know that Molly needs to socialize with other kids and after weighing the pros and cons we decided to give it a try. Molly hasn't been sleeping well, or at all so I today easily could've went either way. She was up until 12:30 last night and woke up at 7:15 on her own which was good because we needed to be there at 9:30. It's at a church just 5 minutes from our house. The second she saw another kid she was off and didn't even look at me once for the next hour and a half. The session started off with a half hour a free play. There was a small ball pit, some blocks and a few other toys. There was only one other mom there. There was a grandmother, a brother and a nanny so I guess my plan to find another mom to relate to was out the window. But that's not what was important. Molly loves to play with any type of ball so she went over to the ball pit which was just a baby pool filled with plastic balls. Molly is very loud. Especially when she gets excited. She has a high pitch scream which usually scares kids or adults if they're not paying attention. There was a little boy sitting in the ball pit and Molly did her scream, scared the little boy and he started crying. I was so emabarrassed but how do you tell her not be excited. She was following another little girl around and kept trying to pull her hair. Another little girl walked up to her and gave her a hug. Jay would've died if he was there. Everyone was saying "aww". I did an awkward ha ha and took Molly to play with something else. She had the best time and didn't want to leave. At one point I had to leave the room to change her diaper and she started crying but the second we walked back in she was happy again. It makes me feel a little better sending her off to preschool when the time comes because she's very attached to me so knowing she doesn't care about me when other kids are around makes me feel better. The teacher said that she did great and she is such a social butterfly, which she definitely does NOT get from me. I'm so happy that she loved it and I can't wait to take her back next week.

Recap of Molly...

Over the past 2+ years I’ve tried to do my best to make sure everyone was informed on Molly’s progress. Since starting Molly’s blog in June 2010 many people have stopped following because she’s not “fun” anymore and that’s fine. But there are still many that do. Some new and some that have been on this crazy journey with us since day 1. Many may think they know why Molly is where she is in life and some of you may not know at all. I just wanted to give a recap on Molly’s life to date, the very brief version of course. So here goes.

*On May 12th Molly made her first trip to the OR for heart surgery. She had a PDA ligation and PA bands placed. There was too much blood going to her lungs, making it impossible to breathe and the hope was this would make it possible to extubate…NOPE!

*May 14th: tried extubation and failed. She was reintubated the following day.

*May 18th: Bronch to find out if the reason for her failed extubation was because of an obstruction or collapse in her airway.

*May 19th: Tried extubation again. Reintubated the following day.

*On May 24th she made a trip to the cath lab. She was down there for hours. Way longer than any of us had expected. She was very sick when she came back up and did not tolerate it all. When we were able to see her she looked horrible – bluish, sweaty and packed in ice. From that day on she had a rough time.

*June 13th we received our first middle of the night phone call. It’s not a phone call anyone wants to make and we definitely didn’t like to receive it. It was actually the nurse that is running the marathon in honor of Molly, Kristin Barber. She had to call us to tell us they were opening Molly up at the bedside to place temporary pacing wires.

*June 24th: We met with her cardiac surgeon, Dr. Emani, and went over the final details of what was going to happen the next day and to answer any questions we may have had. He told us that she was in the best shape she was going to be in to have this surgery. We also spoke to one of the cardiac fellows who told us that there was a good chance she was going to come up on ECMO. We were blindsided and devastated. But this was only the beginning of Molly proving everyone wrong!

*June 25th: The hardest, longest most emotional day in my life. Molly was first case for a very risky surgery. We didn’t know what the outcome was going to be. Everyone was expecting her to come up very sick from the OR which she was but thankfully she was able to come off of bypass. She was wheeled down to the OR around 7am. We were able to walk her as far as the OR doors, kiss her goodbye and only hold on to the faith we had in the surgeon and of course Molly. She ended up going on bypass a little early because she was having a tough time. Her surgeon came out to talk to us. He looked tired and not overly confident this was going to be the answer. Her chest was left open and only time would tell.

*June 29th: My second least favorite day to date. We received our 2nd middle of the night phone call because Molly’s heart rate was 235 and they thought we needed to come down. They had shocked her twice to get her back. By the time we got there she was back in a normal range. The entire ride down I thought that was it. I just wanted her to hang on long enough so I could be there.

*June 30th: Her chest was closed.

*July 1st: Trip to the cath lab. This time she handled it better than the first time. They were trying to decide if the leaking on her valve warranted another trip to the OR. At this time they decided to hold off.

*July 12: Back to the OR to repair her mitral valve and place a pacemaker. This time she came up with her chest closed. After she was done, 8 hours later, we spoke to her surgeon. This time he looked much happier than the last time he was in her chest. Much more confident and relieved. Again, only time will tell.

She was left paralyzed for days. Each time we tried to let her wake up she would have trouble and have to be paralyzed again.

*July 17th: Started a low fat formula because her chest tubes were dumping out chylous fluid, about 500ccs a day. This went on for 6 weeks. During this time she lost chest tubes and had to have them replaced, countless times.

*July 22nd: Diagnosed with a blood infection. Started antibiotics. I was getting fevers as high as 104. This went on for weeks and weeks. I was paralyzed the majority of the time that I had this infection.

*August 4th: Another trip to the cath lab

*August 20th: Had a broviac line surgically placed in my leg.

*October 6th: Molly’s ET tube had been in there for 5 months. That is about 4 months, 3 weeks too long. The week before we were called in because the nurse couldn’t settle her down. They had to paralyze her to capture her. That was what we took as the sign that Molly needed the trach. We were giving her every opportunity to extubate but it just wasn’t going to happen. On October 6th she received her trach. It was by far the best medical decision we had made for her.

*December 16th: Last trip to the OR for a g tube placement

*January 4th: Discharged to home for the very first time!

Life at home has been crazy but we have definitely made the most of every single day at home. We have never taken any minute or second for granted. Just in her first year of life she was able to overcome all of the above and come off of the oxygen and ventilator at home. At 15 months old she had her trach removed and has been playing catch up ever since. We kept her pretty secluded for the first year she was home. We took her to stores but only to stores that we knew weren’t crowded. We never went to anyones house or anywhere that kids would be. If we were in public we never took her out of her stroller. Constantly washing and sanitizing our hands. We took a lot of heat for the way we lived our life and we still do to this day. People think we are over the top protective of her. That may be true but I follow too many kids and I see what a common cold can do to a baby that is immune compromised so we aren’t going to change. We are very careful. She lives a full life and she’s the happiest little girl. She loves grocery shopping and Target. She loves the swings. She loves Cheez Its and Graham crackers. She loves books and TV. She loves her dogs. She loves to be outside. She loves her bike. She loves other kids and she loves mommy & daddy. She does not love going to Children’s. She does not love echos. She does not love being held by anyone other than me or Jay. She does not love being told no. She is just a normal little girl that has some challenges to meet but we she will get there with a great support system and a positive attitude. We do everything we can to make her happy and to get her to where she needs to be. She is starting a play group on Thursday. It is a play group through early intervention so it will be other kids that have some type of developmental delay. I think it will be good for her because she’ll get to be with other kids and it’ll be good for me because I’ll get to talk to other mom’s that kind of know what I’m going through. We’ve been trying to get her in for a few months so I’m very excited for this Thursday.

As always, thank you so much for always being a part of this journey. We love that little girl more than anything!!