Happy Thanksgiving!

It’s hard to remember what you are thankful for on a daily basis but I have a constant reminder of what I am thankful for. I live with her every single day and never take one of those days for granted. But it took a whole army of people to get her here and I’m so thankful for the following.

Children’s Hospital Boston is ranked #1 in most departments, including cardiology. I think Molly helped them put them there J They perform miracles every day. People come from all over the world to get the best care possible from this hospital. We are so lucky to live 40 minutes away. She was able to have the best cardiac surgeon for her. I wish I could tell Dr. Emani every single day how much we appreciate him and what he did for us, for Molly. I hope we never need his services again but if we do I wouldn’t want anyone else to take her heart in their hands.  We were also lucky enough to be able to give back to them twice this year by doing the Nstar Walk and the Patient Partner. This year we helped raise $7200 for Children’s Hospital because of the generosity of our friends and family. It seems like such a small price to pay for saving Molly’s life but we couldn’t be happier. As much as I hate driving down the highway, walking up the walk way, entering the lobby, riding the elevator and going to the appointment inside that building it’s also the only place that I feel accepted and appreciated for all of the work we have done with Molly. It is just such an amazing place and we are so grateful to have them in our lives. For Children’s Hospital we are so thankful.

It’s always a popular thing when someone is sick. Everyone visits, calls, emails or texts to find out how the sick person is doing. Once they start to get better the people stop coming, the phone calls, emails and text become further apart until they eventually stop and people stop checking in. But then there are the few that continue to visit all the time. They still read Molly’s blog or comment on her pictures or status or just send a quick text. Most people we have never met but feel like we have known our whole lives. For all of you that continue to follow and love Molly we are so thankful and I hope you all know how much we appreciate you.

Jay and I have been married for 8 years…YIKES! When we said “through good times and bad” I didn’t know the good and bad were going to be tested so early on in our marriage but we made it through and we made it through stronger than before. We are far from perfect. We are both the most stubborn…STUBBORN people you could ever meet. We could argue about the color of the sky or if dinosaurs every really existed (I say no). But one thing is always the same and that is Molly’s best interest. From day one of Molly’s diagnosis we had to make some pretty tough decisions…the termination of the pregnancy, how we were going to proceed, getting second opinions…the list goes on and on. And from that day on we have always been on the same page which has made it EASIER to get to where we are today. Our life is slowly getting back into a normal pattern. We are able to live a little bit more like a family with a normal, healthy kid that won’t let anyone babysit her.  I don’t know that I would’ve made it this far in this crazy journey with anyone else so for Jay I’m thankful.

Family is so important and not always supportive but we are lucky to have some family that is always there for us. Whether they have done the walk with us, helped us to raise funds or donated, brought us a coffee, visited from out of state, brag about her, ask about her, go with me to doctor’s appointments or take the dogs so we can get away for a few days. We are so thankful to have a family that cares so much!

I never wanted to be a stay at home mom. My plan was always to go back to work after I had Molly. Three weeks after I had a c-section I was back to work. And it went well for a while until Molly needed me more than my work did and I’m so happy with that decision. I was able to find another job that allows me to work from home and raise Molly. I work about 30 hours a week when I have the time to put the hours in. It’s not always easy, especially as Molly gets older but I’m so happy to be able to do it. For my job that allows me to be home and see Molly meet all of her milestones I’m thankful.

Then there is my little miss. Everyone is proud of their child, thinks they are the most beautiful, smart, amazing thing they have ever seen and I’m no different. Molly is living proof that miracles do happen. She has fought so hard from the beginning. At times, I’m sure she wanted to give up but I’m so happy that she didn’t. There has been so much sadness and loss in the CHD and Heterotaxy community this year and it really took its toll on me. I took a step back and have been in a much better place since then but those kids that lost their battle to heart disease and complications from it have taught me so much and have made me appreciate Molly so much more, if that’s even possible. She spent the majority of her first 8 months of her life paralyzed and sedated. Just over the past year alone she eats and drinks everything by mouth, she pulls herself to stand and sits herself back down, she is a TV addict, spoiled rotten, hates to sleep, loves to torture me, loves to go grocery shopping, doesn’t care about the dogs, is only on 3 meds, has grown so much , is only followed by 2 specialists (well 2 once we are discharged from Growth & Nutrition) and made us fall so much more in love with her. She is so strong, determined and stubborn. Even when she keeps me up all night, she keeps me laughing all day. She has made me so proud with all she has overcome because if I had to go through what she has gone through I would’ve given up long ago. She means everything to us and there isn’t a thing we wouldn’t do for her. I’m excited to see what the future holds for her. For Molly Renee Leary (a/k/a Molly Moo) we are so so so thankful!

Last Thanksgiving Molly was admitted to Children’s for a GI bug. I’m hoping this year will be different. We have had one admission this year for her trach site closure. Next year we are shooting for zero admissions but we’ll just take it one day at a time!

Happy Thanksgiving to all of our friends and family! Your love and support has got us this far and for all of you, once again, we are so thankful!

Lots of Progress and Changes

Molly has been making lots of steps in the right direction...literally! She started pulling herself up to standing but couldn't figure out how to get herself down. She would look at us and yell at us to get up and sit her down. Well, she figured out how to sit herself down which gives me a little more free time since most of my day was consumed by sitting her down. She has also started walking while holding on to the crib, TV stand, furniture and anything else that she can stand up on. She also likes to stand up and hold my hands and walk towards me. She is showing so much interest in walking. This week during our early intervention session the therapist brought a pair of braces that she borrowed from another family so we could try them out. After disinfecting them we tried them on. She had a harder time pulling herself up and standing in them then she did in a pair of shoes. When she has shoes on she stands perfectly fine. When she doesn't have shoes on she still turns her foot in but it gets better every day. Early Intervention feels that she may not need braces but I think I'm still going to get her checked out by Orthopedic...what the heck, we haven't seen them in awhile.

She has also added another phrase to her vocabulary. She says "all gone". It's a nice change from her bossy "go" that she uses way too frequently. Once in awhile she will also say "goo ga" for "good girl" but she has to be in a great mood for that to happen. She gets her point across, lets us know what she wants and definitely lets us know when she wants it. She likes to be clapped for. Even if you're clapping and it's not for her she still thinks it is and is so happy.

We had an appointment in Boston today for Growth & Nutrition and with EP for a pacemaker check. We got there early so we went up to the cardiology clinic to get her pacemaker checked. They were just checking the battery, see what her heart rate is if they turn it off, she was her rhythm is. Her pacemaker is set to 120. She can go above it but she can't go below it. Usually if she gets mad it will go up like anyones heart rate. When she was in the hospital we could tell when she was getting a fever because her heart rate would go above 120, of course that hasn't happened in a long time (knock on wood). When we had our cardiology appointment back in Sept we asked about her heart rate and he said it was an OK rate for someone her age. Well, the EP nurse told me it's way too high for someone her age and she wanted to turn it down. I told her I wasn't comfortable with it and it makes me nervous so we agreed to turn it down to 110. She said she was going to talk to the doctor and after our Growth & Nutrition appointment she wanted me to give her a call which I did and she wanted to see us back in the office to talk to me. So after our appointment we went back to the cardiology clinic. She said she spoke to the EP attending and Molly's cardiologist and they felt a good rate for her was 90. I wasn't comfortable with 110 so I definitely wasn't comfortable with 90. When we went back down a 2nd time Molly was happier so we were able to see that her own heart rate was 107. Without getting all technical the type of rhythm she has makes us nervous because when she was sick she wouldn't tolerate it. I guess we also have a hard time remembering that she isn't that same sick kid. She really should be fine with a heart rate of 90 and she probably won't get that low but I probably won't sleep tonight, which really isn't any different from any other night because Molly doesn't like to sleep! They turned the rate down around 2pm and so far she has been fine. The nurse told me not to be nervous and that Molly would be fine. Don't be nervous?! She said that she was glad that only one of us was there today because I kept telling her I didn't like it and why I didn't like it. She said she remembered Jay from when Molly was inpatient and she was happy to not have to deal with both of us. I'm not half as bad as Jay is so she's lucky he's on vacation :)

 

Waiting for EP and trying to get away from Nana

Next up, Growth & Nutrition. I'm usually not really interested in this appointment. I never gain anything from it and I don't think we need it but today I was kind of anxious to get there to have her weighed and measured. Endocrine had made me nervous about her not growing. She looked a little bigger to me and she definitely feels heavier so I just needed that confirmation. This is only the 2nd time that she has been weighed and hasn't cried. I guess she was tired from screaming during EP. She weighs 24 lbs 4 oz and is 33"!!!!!!!! I can't remember how much she weighed the last time but that is an increase and that is a 2" growth in 2 months. I'm so happy with that. She is still gaining weight even though we stopped her g tube feeds which is also great news. She's barely on the chart for height but she is in the 38th percentile for weight for height which means she's proportionate. We discussed her feeding and fluid intake by mouth and they are so happy with her. She is eating and drinking enough. We are going to start weaning her Omperazole (Prilosec). She currently gets 2 doses per day. We are going to cut back to once a day for a few weeks. Then we will go down to every other day for a week and then we can stop it. That will leave us with only 3 meds!!! We don't have to go back until March which is the longest we have gone in between these appointments. When we go back in March that will be our last appointment with Growth & Nutrition. Yay, Molly!!

 

Waiting for Growth & Nutrition with her iPad

After our 2 appointments we went over to the CICU to say hi to our friends (doctors and nurses). They are so happy to see how far she has come, see how big she is, see all of the wonderful things she is doing, see her meeting milestones and just being a normal kid (cautiously and with lots of hand sanitizer of course). The nurse practioner asked if she could take a picture of Molly because they have a family who is considering a trach for their kid and she wanted to show them how great she looks now. Two years ago I could only dream that she would be doing this well. It makes me so proud to be her mother. She is going to do great things and I couldn't be happier to be along for the ride.

Now if she would just sleep...

Love her...

When Molly was in the hospital Jay and I had a great outlook on life. We had figured out what is important, what is worth fighting for, fighting about, who is important and what really mattered. The longer Molly is home, the harder it is to remember those things. We are slowly slipping back to the way we used to think. It's harder to let the stupid stuff go. It's harder to not complain about the small things but I think I got a little bit of that back today. Molly & I took a trip into Children's today to visit with some fellow heart moms. After talking with them it took me right back to where we were 2 years ago. I was able to remember that there is so much more to life than complaining about Early Intervention or having to get up in the middle of the night because Molly is having a nightmare because there was a time when I couldn't comfort her when she had a nightmare. Now if I can just remember that at 2 am :) Months would go by when I couldn't hold her because she wasn't stable enough to be moved. Now I can't even imagine not being able to pick her up when she wants me or needs me. Every night I rock her to sleep. It's a pattern that we have gotten into and it works for us. She doesn't take a nap all day so usually around 7 she starts to get tired. She will start handing me random toys and I know she's tired and is trying to fight it  by handing me a Lego or a block. So she grabs her blankie and climbs up on my lap while I hum "Row row row your boat" and she falls asleep. I carry her upstairs and put her to bed. Tonight I didn't want to put her down. I was thinking about all that she had been through and all of the times I couldn't hold her. All of the "close calls" that we had and all of the times that I thought that I would never have that moment. Good thing she's really heavy because I would've sat there all night with her. She struggles developmentally but honestly if she stayed the exact way she is right now forever I would be happy. I don't care if she doesn't walk or talk. I will carry her for as long as she needs me to. I don't care if I have to get up for her 100 times a night. She's worth it. I don't care if I have to take her to 10 different specialists. At least there are specialists to help her. There isn't a thing we wouldn't do for her. I just want to give her the best life we can while keeping her the healthiest we can keep her. Sometimes it's not easy and we have to pass on a lot of functions, parties and events but she is more important. It gets especially difficult this time of year.

Molly is doing really well. She went trick or treating and loved it. We brought her wagon because she's so heavy. Unfortunately once we took her out of it she didn't want to go back in. She's pulling herself up on everything. Her foot turns in less but it's still doing it. She is taking better steps when we walk with her. Unfortunately she's afraid of the walker now so we just walk with her while holding her hands. She is growing up so fast and getting so big and I love every second of it. We are looking forward to the holidays and hoping she can stay out of the hospital this year since she ended up there last Thanksgiving. That is my only hope for the rest of this year and every year to come!

Thank you for always caring!

Kerry

A tribute to a great nurse!

On May 5, 2010 Molly was transferred to Children's Hospital Boston. That was the day that one of the most special people came into our lives. Of course we didn't know it at the time because we were concentrating on Molly, getting her stable, learning everything that comes along with a child like Molly, oh and recovering from a c-section. Molly was admitted during the day but that night a very special nurse came on and took care of Molly for the very first time. I'm sure she was wishing that night that she had taken the day off. Kristin took care of Molly just about every shift that she worked. I remember the first time that I met Kristin. I was sitting in Molly's room staring at her monitor when Kristin poked her head in because she was there for a meeting. She said "I just wanted to introduce myself. I'm the one that takes care of your daughter at night." I wanted to reply with "I don't care, I just want to take her home and I don't want to get to know anyone". I wasn't in a good place and I just wanted to cry all the time for obvious reasons. The first time we really got to have a conversation with her (other than on the phone) was one of the most difficult nights we had had. Molly was in the cath lab and it was taking a really long time. Longer than we had expected. Kristin shift had started while Molly was down there and she had to explain to us that Molly was having a tough time and they were stabilizing her. Everyone remembers the surgeons and doctors but what people don't always remember is the tough job the nurses have of not only having to deal with parents like us who ask a billion and a half questions but they have to deliver horrible news, make those difficult phone calls in the middle of the night, etc. It's not a job I could do, not a job many people could do and not a job many shouldn't do. But there's no one I would've rather had calling me than Kristin.

As time past we became very close. She became more than just Molly's nurse but a great friend. She was there the morning of Molly's first open heart surgery. She took care of her after her open heart surgery. She gave us something that not many people there could and that was piece of mind and some sleep. Even if Molly was having a horrible night it was EASIER to leave knowing that Kristin was taking care of her. With each passing month she would usually be the one to make Molly's birthday sign. On Halloween she dressed Molly up as a doctor and made sure she took pictures so we could see her in it in case she got too hot and had to take the costume off which of course she did. She just went above and beyond what a nurse is.

                This is the first sign that Kristin made for Molly

Of course there were times when we butt heads but she always understood that we were stressed, upset and frustrated for being there for so long (Sorry, Kristin). She cried with us, cried for us and I'm sure cried because of us. When things were great she was happy for us and when they weren't well, she could sympathize. She definitely made our stay there a little easier and we will always be grateful to her for all that she did. Because of all that she did we partnered up with her to raise funds for Children's Hospital Boston as she runs the Miles for Miracles Marathon in New York one week from Sunday. She has been training for months and has never done anything like this before. On top of training for a marathon she is working at Children's, going to school part time, taking care of her family and dog. She will be running 26 miles for the very first time. This Thursday we get to celebrate with her and her husband at a dinner for Miles for Miracles. We are so proud of her and couldn't be happier to have her as a part of our lives. We love you, Kristin! Good luck!!

"Baby Steps"

Molly has been very busy which makes us very busy. I have been working with her to pull herself up. She did it once months ago and never did it again. She would put one foot up but never went any further. So I put my hand on her bum for a little support and she would push off into a standing position. She finally did it by herself but would just stand in a split position rather than bring her feet together. Well, now she's a pro and does it all. She started pulling herself up in front of the TV...well, that really shouldn't be a surprise to anyone. Then she started doing it in her bed which is my biggest nightmare because she doesn't sleep as it is. And now she does it everywhere. This morning she greeted me by standing up in her crib. It kind of surprised me because she has never done it. She was like a normal little girl just standing there waiting for me to get her. Now she just needs to learn to get down. She will get down in her crib but she won't do it anywhere else. She has even started taking a few steps. Of course nothing comes without a whole new set of problems. Her ankles are so weak. Her left one is worse than the right one. We don't know if it's because she had a Broviac line in that leg and they had to cut the muscle but it makes sense and that's what we'll go with. Not that it matters what the reason is but we (Jay) always has to have a reason why. She is always rolling her ankle and standing on the inside of her foot. Since she's been standing more she has been correcting it but I think she's going to need braces for at least her ankles. We have an appointment with her pediatrician next month so I'm going to ask for a referral to see ortho. Every time I think we're done with a specialist we end up adding them back in but I know that she will benefit from it and she needs it.

We appealed Synagis (RSV Vaccine) and she was denied. I received a call from the insurance company telling me the pediatrician had sent in an appeal and asked me if I would like to add any type of information to help with the appeal. I asked what she had for a medical history and she said nothing. So I gave Molly's 30 page medical history and it was submitted. They denied her because she's over 2 and they couldn't justify making an exception and the pediatrician agreed. I have never met a pediatric doctor that doesn't advocate like this doctor. UGH! So we are going to stop play group on November 1st. Early Intervention wasn't happy about it but I really don't care. I know that some people are thinking that we can't protect her forever and I know that's true but I can protect her right now and that's what we're going to do. I've said it a million times that if she gets sick we are the ones that are up with her at night. If she ends up hospitalized we are the ones that sit there by her bedside. So say what you want but this is how it is. No play group! We are in the process of making our basement into a play room. Jay's been cleaning it out and it's almost ready to be painted so she will have her own day care center down there.

We had a new speech therapist start today. Molly seemed to like her. She'll like anyone that will blow bubbles at her. She had some different ideas so we'll see how it works.

Other than that, we've been trying to stay healthy and just keep making baby steps forward. She makes us so proud every day.

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.