A lot to think about...

As we approach February we have a lot to think about. We have a big appointment in March with the general surgeon to talk about Molly's LADDS procedure (the surgery on her intestines). We always had the excuse that we were giving her heart time to heal. Well, her heart is so much better and we really can't use that as an excuse anymore. So we are leaning towards doing the surgery this summer. We want to get through her birthday in May and the Children's Hospital walk in June. So we are looking at any time after that. When it comes to Molly's medical needs Jay & I are almost always on the same page. We have done our research on this surgery...read about other families experiences, looked at statistics, spoke to the doctors. And everything scares us to death...until last night. I told Jay that I wasn't really scared going into this procedure anymore and he said he wasn't really either. Are we nervous...hell yeah but less. I don't know why. It's a 6-8 hour surgery. It's going to put her even further behind with standing and walking. But she could not be in better health going into this. We have had this surgery hanging over our head for over a year now. We are constantly thinking about it, talking about it, worrying about it. We just need to do it. It's a long hospital stay (no where near as long as the first one but it's long enough) and I really REALLY do not want to do this but we just need to put it behind us. Not that it will ever be behind us because she can still develop a blockage, etc. But if something does develop after the fact we will know that we did everything we were supposed to do. We still have some questions for the surgeon but for now that is the way we are leaning...for now. The good this is with this surgery occupying so much of our thoughts, we really haven't had too much time to stress about her surgery in April. See, there is a positive to every situation!

Everything else has been pretty quiet. She's just chugging along. She even allowed me to go out to dinner with one of my friends Saturday night while she stayed home with daddy. We did arts and crafts Sunday night. I had the brilliant idea to make Valentine's Day gifts. A one year old plus finger paint does not make for a good time for me. I don't do well with mess. I like organization, neat and clean. So the finger painting stressed me out. When I feed Molly a play a game with myself to see if I can feed her without getting any food on her bib. I know, I'm a loser! But I really have no adult interaction so I have to create things to amuse myself.

It's been 6 months since Molly's last Early Intervention assessment so she has one coming up on Tuesday. I'm curious to see where she scores but it's always difficult to hear how far behind she is. I was speaking with our feeding/physical therapist about the next step after Early Intervention. EI only goes up to the age of 3 and since Molly is going to be 2 in May I was curious as to what we would be doing after it ends. Once Molly is 2 1/2 we will write a referral with EI to get her enrolled in public preschool. I don't know how I feel about her being exposed to all of those germs. I know she needs to be exposed to germs but that's a lot of boogies. It's a long way off and I don't want to worry about it just yet but time flies by in my life and it will be here soon. As sad as it makes me to think about Molly going to preschool it also excites me a little bit. A year and a half ago we never would've made plans for her future. We were living week to week. We wouldn't even buy anything that she would use when she's older because we didn't know if she was going to live to be old enough to use it. But now we are buying clothes and putting them away for next year, making plans for her future, planning vacations, doing a fundraiser in June, thinking about her birthday party (actually I started thinking about it in June of last year). I'm big on making plans. I like to know what I'm doing at all times so this makes me very happy.

I also wanted to thank everyone that has donated so far to the Children's Hospital walk that we are doing on June 10th. There is still plenty of time to make a donation. If you are interested in helping out here is the link: http://howtohelp.childrenshospital.org/walk/team/Molly-Moo.htm

Once you have copied & pasted the link, click on one of our names and make your donation. Any dollar amount is appreciated. If you are interested in walking with us, let me know and I will tell you how to join our team. If you can't donate, we completely understand. All of your support to this point as been more than enough!

Kerry

It's tough being a CHD parent...

When Molly was born we entered into a group that I never knew existed and never wanted to be a part of. At times I still don't want to be a part of it. While it can be reassuring and supportive it can also be heartbreaking and devastating. Being a part of the CHD world is anything but easy. Not only do we worry about our own kids but we are constantly following the progress of other heart babies. You form unspeakable bonds with the parents of these babies. After all, they are the only other parents that know what you have been through and how you feel. Once you have a baby with a CHD you can no longer relate to a parent of a heart healthy baby. Well, I that's how I feel anyway. The parent of a heart healthy baby doesn't know what it's like to sit by your child and watch them fight for their life or struggle to gain a few ounces or monitor their O2 and heartrate everyday, give daily meds, constantly worry about their health and germs, freak out if they touch anything in public. In the process of forming this bond with these parents you also become attached to their kids. You find yourself checking their blog or going on Facebook just to make sure they are OK and when they're not it effects you. Today when I signed on to Facebook I saw that a baby had lost his fight. It wasn't expected. His mom was talking about him going in for sugery next week for his repair. But we learned pretty early on that you can be on top of the world, doing great one second and coding the next. It made me so sick when I read it. It brought me to tears. I cared so much for this baby and I never met him or his mom. It just hits way too close too home. It's not fair. I'll never understand why a baby has to fight so hard. Molly is so great at making us forget that she isn't like every other baby but when something like this happens it's a reminder that this could've been us. Before Molly I never paid much attention to the sayings "life's too short" or "make the most of each day". Now they are words to live by. There are times I still forget but right now they are fresh in my memory so I'm going to give Molly a kiss (not a hug because she hates it) and hold her for the one second that she'll allow me (because she's the only baby on the planet that doesn't like to be held) and you should all do the same to your kids or the people you love because you just never know!

Kerry

Now that my cardiology appointment is behind us we can relax a little bit until my next one in May. Scratch that, until my surgery in April. So for now we are going to try to make the most of the winter. My uncle Tommy bought me a sled for Christmas and I haven't been able to use it...until today! Daddy doesn't usually get to enjoy the snow because he has to plow but he didn't have to go in until noon today so he was able to take me for a ride in my new sled while mommy literally took pictures like she was the paparzzi. It was cold and sometimes the wind takes my breath away so we had to make it a quick trip but I had fun. I was bundled up in my snowsuit that mommy and daddy bought for me last year. They weren't sure that it would fit because it was size 6-12 months. I guess it's lucky for them that I'm small. Actually, the suit was gigantic and I couldn't move once it was on. Here are some pictures from today!

Thank goodness that's over!

Today started very early...for all of us. The preparation for today actually started last night. I got everything together for today...food, formula, flushes, diapers, meds, picked out her outfit to include a button down shirt so I wouldn't get her mad by pulling it over her head, etc. And Jay transferred some Mickey Mouse Clubhouse episodes and Care Bear movies to the ipad with the hope that this would calm her down somewhat. Jay had to get up at 2am to plow. I got up at 5 and my little friend was awake to greet me. I'm so glad that she didn't fall back to sleep because I did not want to have to wake her.

We left the house at 7am and stopped at Dunkin Donuts (of course). We arrived in Boston around 9 and the echo was scheduled for 10am. So we sat in the lobby (away from all the snots) while I fed Molly. I didn't want to give her any reason to get angry. We also made sure that she pooped last night because if she doesn't, she's not a pleasant child. So I gave her an extra dose of prune juice. She gets about 120ML on a regular day otherwise she has issues.

I received a call from the cardiology clinic yesterday asking me if I thought Molly would sit through an hour long echo. I chuckled and said "do I think she'll sit through an echo? No. I know she won't." I told the girl that I spoke to the cardiologist about not doing the sedated portion of the echo and he was OK with it because she was going to be under anesthesia in April and he could get an accurate echo then. I also told her that the problem with the echo is that she gets weighed first and gets mad, then they do the EKG and that sends her over the edge and by the time they are ready for the echo we can't get her back. I told her we were in Boston last week for Growth & Nutrition and asked if we could just use that weight and do the echo first so that's what we did and it worked out so much better than we ever could have expected. They gave us a minute to get the movie going, take off her shirt and let her get comfortable. At first she wouldn't lay down. Figures the time I want her to lay down she doesn't want to. I swear this kid lives to torture us. She finally laid down, the applied the gel and then the wand to her chest. She laid there so content, watching her movie, kicking her feet and even laughed a few times. Towards the end she started pushing the lady's hand off of her but we couldn't believe what we were seeing. Never did I think this is how our day was going to go. I take 800 million pictures of her a week but I don't bring my camera for the echo...figures, huh? The echo tech said that we could get her dressed and then the doctor told her she needed more images. I thought for sure that was going to be the end of her good mood but nope. She laid back down, watched TV and let her get her images.

Then it was back out to the waiting room to wait. We got called back again and they were going to do a 13 lead EKG. That's 13 stickers to put on and take off. She laid down and let them do it without a tear shed. We ended up waiting about 40 minutes for her cardiologist to come in to talk to us which is a lifetime when you're waiting for news about an echo which is the reason we came prepared with movies and books. He finally came in and said that everything looks great. Her heart function is great, the regurgitation on her mitral valve is mild which is essentially the same as the last time. He didn't even mention her VSD which we are assuming means that it's not there or it's so small. She has no narrowing of her valve either! All of the pressures in her heart are normal!!!! He said that she is amazing and has made a monkey out of a lot of doctors and every time that he sees her he is less concerned about her mitral valve. It's funny because we are always concerned with it :) She was in her paced rate (121) the entire time we were there. She was satting 100%. Her blood pressure was the best it's ever been - 86/67. We also asked about turning down the rate on her pacemaker. They turned it down to see what her own heart rate is and she sits about 107-109. They contacted the doctor in charge of her pacemaker and he said that it could be turned down to 100 but she doesn't have a normal sinus rhythm like we do. She goes in and out of what is called a junctional rhythm. Would she be OK being in junctional? Probably. Did we feel comfortable with it? Hell no! So we kept it at 121 for now and when she gets admitted for something else we'll do it down when she can be monitored for a little while instead of just sending us home.

So what does this mean for her? That means we get rid of her last diuretic!!!!!!! That means that we don't go back until May and we don't need to get an echo while she's under anesthesia in April and we may not need one in May either. We continue to keep her healthy and happy and enjoy her healing, healthy heart! This means now we have this echo behind us and move on to worrying about our next big decision (her intestine surgery) but for today I'm going to enjoy the news we got. I couldn't be more proud of this little girl if I tried. She is truly amazing!

Echo weeks are tough!

I definitely don't love weeks when we have an echo. I didn't like them when I was pregnant with Molly and I don't like them now! Of course when I was pregnant she wasn't screaming like someone was killing her during them.

Molly has an echo and cardiac visit on Friday. I don't like when they're on Friday because then I stress about it all week. I try to keep busy and that's easy to do when Molly's awake but when she's asleep I'm usually working. Since it's mindless work my mind wanders and I think about it. Not that I think her echo is going to be unchanged but she stresses me out because she is sooooooo horrible. She hates being weighed, she hates the EKG and she hates the echo. Nothing calms her down. Not her DVD player, not her books, not her blanket...nothing! I just want to fast forward to Friday afternoon when it's over. Our appointment is at 9:45 in Boston which is an awesome time. Right in the middle of rush hour. We have to leave by 7:30 to make it on time. Molly doesn't get up until 8:30 so I will have to wake her which should make her even more pleasant during her appointment. Anyone want to trade places?!

We are hoping to get a few things out of this appointment. She is only on one diurectic once a day and it's a small dose so we are hoping to get rid of that. Her diapers are huge all day long so it's really not doing anything for her anymore. I had emailed her cardiologist when she was sick to see if we could hold a dose since she was dehydrated and it didn't make sense to ask her to pee when she wasw dehydrated and he said we'd probably be getting rid of it soon anyway. Another thing we are hoping to get out of this is to have her pacemaker turned down. Right now she is being paced at 121. Her heartrate can never go below that. It can always go above which she has done on many occassions but 121 is too high for a kid her age and it's been at 121 for over a year. Her cardiologist wanted to take her pacemaker out (silly man, that's our security blanket) but we'd rather turn it down and see how she does with that then if she does OK we can turn it off. We're not going to be messing around with that until the battery needs to be changed or she goes in for her LADDS procedure (intestine surgery). I don't know if he'll feel comfortable doing both things but even if we do one and then in April (when she has another echo) we'll do the other. Guess we'll find out on Friday if I make it to then!

Kerry

Growth & Nutrition

I had a very long day today. I don't like days like today. We left the house at 11am because I had an appointment at Children's for Growth and Nutrition. I dread this appointment every time because it's so long. I see three different people...one is to help mommy with some feeding tips, another one is a nutritionist and the other one is a doctor but I don't know why I see him. He doesn't do anything. I think he just wants to waste our time.

We got to Children's at noon. Mommy didn't feed me because she knew they would want to see me eat so she held off. Not only was I starting to get hungry but I was starting to get sleepy and those 2 things are never a good combination. Then I had to get weighed and we all know how much I love that. I am 8.98 kg (19 lb 12 oz). The nutritionist was understanding and said that it's going to take some time for my body to catch up to the way it was before I got sick. This is exactly why mommy & daddy try so hard to prevent me from getting sick. I'm not like every other baby. It effects me differently and takes me so much longer to recover. We are taking a step back from my feeding. We were trying some solid foods...disolvable puffs, muffins, etc. Now we are going back to things that I can chew on but not bite off. The feeding therapist thinks I may have taken a bite of something and broke it off and it may have scared me just enough so that I don't want to eat solid foods. So now we are doing our oral feedings 3 times a day. We are going to try 2 jars of baby food with each feeding as well as my g tube feeds 4 times a day. Instead of the rice cereal we are going to try oatmeal since the rice didn't agree with me. I have a lot of stuff to work on and it's pretty overwhelming for mommy. She is try to work on my walking/standing, talking/speech therapy, feeding/drinking plus all of my doctors appointments and everything else. My appointment today ended up being three hours which is way too long to occupy any kid in a doctors office. Needless to say we didn't get home until 5pm. I had a half hour nap, not much feeding and a belly ache. But I'm good now! On our way out we bumped into one of the nurses that took care of me when I was in the hospital. She was actually the nurse that admitted me originally. She hadn't seen me in awhile and thought I looked amazing. It was so good to see her and get her opinion. The biggest thing she couldn't believe is that mommy was going to put a blanket on me since she took care of me on many days where I would spike a fever of 104 for no reason. So it's always great to hear!

Tomorrow is early intervention then Syagis (the RSV vaccine that I get every month in the winter). Hopefully after this one I only have 2 more...forever!

Have a good night!
Love,
Molly

Giving back to the hospital that gave us everything!

On June 10, 2012 we are going to be walking for Children's Hospital. We are very excited to finally be able to give back. When Molly was in the hospital we drove by and saw everyone gathering to do the walk and we both said that we wanted to do that once Molly was out and doing better. Well, Molly is out and doing better so this is the year! We are registered and ready to go. Now all we need is you! Whether you would like to make a donation or join our team and walk with us or just cheer us on from afar. Your support, as always, means everything to us. If you would like to join the walk with us let me know and I can let you know how to do it. If you would like to make a donation just click on the link below. I know it's early but I wanted to give ourselves plenty of time to raise as much money as possible and I'll keep reminding everyone as time goes on.

http://howtohelp.childrenshospital.org/walk/team/Molly-Moo.htm

On another note, I have made a few goals for myself and for Molly for this year. Some are a stretch but some are definitely realistic. One of the biggest goals that I had set for myself was to get Molly walking before her 2nd birthday. I don't know how realistic that is but we'll see. On Saturday she stood up by herself while holding on to a chair for the first time. Jay got to see her do it yesterday. It's pretty exciting. Especially because one of the Early Intervention women thought she was going to need a wheelchair. I'm not really sure why she ever thought that but it always stuck with me and I'm determined to prove her wrong (even though she doesn't come anymore but word will get back to her). We are so proud of her. I can't wait for her to run around chasing the dogs or run up to me and hold on to my leg! I know she'll do it but like everything else it will be on her time!

Welcome!

Hi Everyone! I've decided to switch from Caringbridge to my new blog because there were some limitations with Caringbridge...I had to keep deleting pictures to add more. Mommy would also type out an entire update, hit update and the entire thing would disappear. So here I am. On to bigger and better things!

While I was in the hospital mommy & daddy had always said that they wanted to give back to the hospital that saved my life (of course this wasn't said until I was almost out the door). How do you repay someone for saving the life of your child? You do a fundraiser. Mommy & daddy decided that we are going to do the Nstar walk for Children's Hospital in June. It's a 7 mile walk in Boston. It should be fun. We are going to put together a team of people to walk with us (if anyone is interested) and help us raise money for Children's Hospital. As soon as we have all of the details and mommy has us registered and our page is created I'll pass it along to everyone. Until then I hope everyone enjoys my new blog!

Love,

Molly

Trying to see the TV in the living room from the kitchen