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!!