Cardiology

Molly was seen in cardiology clinic today. She hasn't been seen since January. I never look forward to this appointment. Everything about it stresses me out. She has remained stable from a cardiac stand point for so long and she has done so well and I'm always waiting for him to give us bad news after always receiving good news. We have been taught to always look at the patient and if you look at her she looks phenomenal but sometimes I have a hard time with that concept. Molly woke up in a great mood and I was so relieved. I didn't want to assume she would be in a great mood for her appointment because I just never know with her. Last time she shocked us by being cooperative, no crying or getting mad. That was NOT the case today. The nurse came out to the waiting room to let us know that they were running a little behind and said that Dr. Rhodes (her cardiologist) didn't know if he was going to need an echo today. I asked her if we could do the echo first if one was needed because she was going to get angry and they wouldn't be able to get great images. The echo was going to be based off of the blood pressures and EKG. If the EKG showed something unusual then we would have the echo but it didn't so there was no echo today which was a good thing because there was no way she was going to cooperate. They did the EKG first and she got mad but calmed down when the lady started blowing bubbles. She wanted no part of the ipad today. Then it was time for her to be weighed. You would've thought they were cracking her chest open again. She was definitely the only kid in the entire building that was crying and carrying on...not that I cared. If she could've climbed off of the scale and jumped into my arms she would have. She finally calms down from that and now they want to check her sats and blood pressure. Her sats were 98 which is normal for her...well, for any healthy person really and her heart rate was 145 (she's paced at 121). So she was pretty angry. There was no way they were getting a blood pressure and they didn't. Dr. Rhodes comes in to talk to us and listened to her. He said he still hears the mild regurgitation on her mitral valve but it's the same that it has been. Her heart pressures sound great and her heart in general sounds great. I asked about turning her pace maker down and what we would look for if we did turn it down because she's not in a normal sinus rhythm. He said that you wouldn't be able to tell by looking at her but a healthy heart would be able to tolerate a junctional rhythm which is what she is in most of the time and he doesn't see why she wouldn't tolerate it. I'm not ready to find out if she will tolerate it or not so we are going to sit at a rate of 121 for now. He had 2 questions for the future: 1) how long is she going to need her pacemaker? Does she still need it? When can we take it out? & 2) Will her mitral valve need any type of repair or replacement in the future? Right now it's functioning really well and growing with her and the hope is that it will continue to do that. But he said "I don't have a crystal ball so I can't see into the future by I'm very optomistic". Only time will tell. We went over her list of medications...all 4 of them (woo hoo!) and he asked if the only heart med she was on was asprin and I said yes. He said "who would've thought that ever would've been the case? Not me". I said "probably not many people.". He then said that Molly is going to have a whole bunch of cardiologists scratching their heads for many years to come because they never thought she would have looked so great and be so healthy. Just another reason we are doing the walk for Children's Hospital because none of this would've been possible without them! So over all it was a great visit aside from her meltdown. We go back in September and at that time she'll have another echo. In the meantime we are going to protect that heart like we have been doing and enjoying the summer!! Kerry

Busy..busy

Molly has been keeping busy and keeping us busy. We had her birthday party on May 6th and it was great. Our day started at 5am. Molly woke up on her own. I wanted her to get up at 6am anyway so she would be ready for a nap at 11am before her big bash at 1pm. She was in a great mood and very cooperative. As people started to show up she became more clingy to me and didn't want me to put her down until her cousin showed up then she was fine. She loved playing with him and I was so glad that he was there so I could give my arm a break for a few minutes. The cake was donated from a company called Icing Smiles. They work with kids that have complex medical needs. I guess that would be Molly :) They put us in touch with a baker in our area. The cake was provided by Cakes by Erin in Haverhill. They did an amazing job!

We could probably have a Mickey Mouse Clubhouse theme every year but while I still have a say in her life, I'll pick the theme with some of her influence of course. So we did Strawberry Shortcake. It probably wasn't the best idea because it's almost impossible to find Strawberry Shortcake things.

Molly got a lot of great gifts and I'm happy that she has some new, more age appropriate toys. She was starting to outgrow some of the toys that she had which makes me so happy because that means she's making forward progress! Now that she's a big girl and 2 years old she can face forward in the car. Of course I took a picture of her facing forward :)

Thank you to everyone that came! Fast forward a few days...Molly decided to stop sleeping at night. She started waking up around 1am and staying up until 4am. That doesn't work for me since I wasn't going to bed until midnight. I would just fall asleep when she would wake up. I don't want her to "cry it out" because Jay has to get up for work in the morning so I try to run into her room as fast as possible. And if I did let her cry she would just send herself into a downward spiral and it would take her forever to calm down. She wants to be rocked back to sleep so that's what I do but when I put her down in her crib she was waking back up. At that point she was wide awake and ready to start her day. I tried everything. I tried rocking her, patting her bum, singing, shutting the light off, bringing her downstairs to the living room. The only thing that worked...TV. I hate doing it because then she stays awake but nothing else would work. Once she fell back to sleep she would wake up around 8:30am. She was in a great mood. I don't know how. I can tell you that I was not. Saturday I decided to keep her up all day to see if that would work. I wasn't going to let her take a nap so I decided to take her to the park, the mall and grocery shopping. Well, it worked. She didn't fall asleep but she did still wake up that night. She was up from 2am-5am. UGH!

Mother's Day was kind of tough. I was so so so so tired. When I'm tired I'm not fun to be around. We ran some errands and came home, set up Molly's water table that she got for her birthday and spent the afternoon on the deck. It was all that I had wanted to do and I'm so happy that we did. She had a great time and was so happy and that's what it's all about.

SHE FINALLY SLEEPS!!!!!!!!!

Even though Molly's sleeping has been all over the place she continues to amaze us. She has been doing so much better getting up on her hands and knees and getting around. She has been picking up baby puffs and yogurt drops, putting them in her mouth, chewing them and swallowing them. She has done this every day for about 4 or 5 days so I'm confident to say that she's transitioning to table food..finally!!!!! When she was playing at her water table she was standing independently for about 20 minutes. She's just the most amazing little person I have ever met! Now I just hope she sleeps! Kerry

Happy Birthday to my love!

On this day, 2 years ago at 10:35am I had no idea that I would be meeting my hero. Molly was born very big (thank goodness for c-sections) and very blue. She was whisked away so fast. Jay got to hold her long enough to take 2 pictures and they grabbed her from him so they could intubate her and stabilize her. It wasn’t until the next day that I got to hold her for the first time. Little did I know that this would be one of 2 times that I would get to hold her for many many months. I will never forget the day that Molly was born. I wasn’t nervous at all. I wanted her out because I had been in pain for so long and I was ready to meet her. I was so big and so uncomfortable. We had been through so much with this pregnancy and I was ready for it to be over and begin the healing and fixing of this little chunky baby. But at the same time I wanted her to stay inside forever because we had no idea what our life was going to be like and I felt like I could protect her as long as she was inside of me. We arrived at the hospital and everything moved pretty fast. They took me back around 10am while Jay got dressed. There were so many doctors and nurses waiting for Molly. I was so sick. I threw up during the entire surgery. At 10:35 Molly arrived. Even though she was blue she was so beautiful. She had so much hair and she was so loud. I was so happy to hear that cry. It was the only time we would hear that cry for over a year. I was in recovery for 19 hours because I had some issues. I remember Jay telling me that they were waiting for a bed to open up at Children’s Hospital because the hospital that was supposed to take care of her wasn’t equipped and she was so much worse off than they had thought. They wheeled me over to see her after a few hours. I only stayed with her for a few minutes. There were so many machines but it didn’t bother me because she was alive and doing OK. She was still my baby and I was so happy to have her. Four days later I was finally able to see Molly again. We left Tufts and headed over to Children’s. I got my parent badge with an expiration date of 2 weeks. About 20 more badges, countless procedures and scares and 8 months under our belt we had our baby in our care. Two years later we have the cutest, happiest, most stubborn little girl. She is still behind developmentally but I don’t even care. Not in the least bit. Each week she is doing something new. And like always it’s on her terms. She’ll do it when she’s ready. I’m not pushing her to do anything that she isn’t ready for. I’m just so happy to have her with us today. We’re not sure of what our future holds but no one knows their future. Even with the healthiest of kids or people you don’t know what tomorrow brings so why would we? We just know that we make the most of every second we have with her. We try to give her the best life possible and never want or need for anything. We are doing a pretty good job of it because I went out looking to get her something for her birthday and couldn’t figure out one thing to buy her. Two years ago I didn’t know what Mickey Mouse Clubhouse was and never watched an episode of Dora the Explorer. Strawberry Shortcake was just a childhood memory. And now not only do I know the theme songs by heart but I also know the episodes word for word. My life is now cartoons. I couldn’t tell you what is going on in the world. I have zero knowledge of current events. I’ve experienced enough sadness so I’m better off thinking that life is talking mice and a little town called Berry Bity City. She may not walk or talk yet but she is the most loved and cared for little girl that I know and for now that’s all that matters. In one year she started rolling on her belly, then rolling over, sitting up unassisted, was decannulated, overcame a few bugs, few hospital stays, started standing, started eating and drinking by mouth and most recently went from laying down to sitting up and most importantly makes me laugh every single day which is the hardest task of all! .I’ve just never met anyone like her and probably never will again. We are constantly thanking Children’s Hospital, the doctors and nurses but really we need to give all of the credit to her. She did it. She has come this far. She has overcome all of the hurdles. She continued to fight when we didn’t think she had any fight left to give. Or as they like to say in the hospital, she didn’t have any “reserve”. I think it’s pretty safe to say that she has reserve now! She works so hard every single day on things that come so naturally to other kids. I don’t know why we were dealt this hand but I wouldn’t trade it for anything. I love this girl more than I can ever express in words but I will show her every single day of her life! Happy Birthday to my little chickie!

Last year's birthday photo!

What we've been dreading

At the beginning of last week I came down with a cold. It started off with a sore throat then a stuffy nose and cough. I started taking medicine at the first sign hoping it wouldn't develop into anything but it did. Our biggest fear was that Molly would catch it since I'm the one home with her all day. I don't know how I even caught it. I'm so careful. I'm always washing and sanitizing my hands. Whenever I would pick her up I would put a mask on. I tried to just let her play and only picked her up when she needed me to. We had made it through the week and Molly stayed healthy. Saturday night we went out to dinner and Molly was so great. That night she went to bed and about 10:20 she woke up screaming and kind of gasping for air. We think she coughed in her sleep and panicked. She calmed down after a few minutes but kept waking up all night. The next day we went to the store and got some Vicks rub and some honey elixer to soothe her throat. We kept an eye on her temperature and her O2 sats. She never spiked a fever and her O2 was always 97-98 which is where she usually sits. By Sunday afternoon she had a cough and a stuffy nose and didn't feel like eating her drinking. At that point we were so grateful for her g tube. I made the decision to just keep her in bed Monday. I brought her movies, books and toys to her and I brought my laptop into her room and worked from her room while she rested in her bed. She took a 3 hour nap and when she woke up I gave her a bath. She was feeling so much better after her nap. She woke up a few times Monday night but after 1am she slept until 8:30am. She woke up feeling so much better and was eating and drinking again. Today she is back to herself. She still has a little cough but her stuffy nose is gone. We are so happy that she handled this cold well but it doesn't mean that we are ready for her to be exposed to germs. We are still going to be as protective as ever. I know that we can't keep her in a bubble and we can't protect her from the world and we know that she's going to get colds here and there but we're not ready to let our guard down. I'm still not going to let her touch things in public or touch other kids or lick play ground equipment. I know that people judge us for how crazy we are with germs but we are the ones that will have to sit in a hospital day and night with her if she does end up getting admitted for an illness. We are the ones that have got her this far in life. We are the ones that sat in the hospital every day when she was fighting for her life and made the promise to ourselves that when she came home we would do everything we could to keep her out. We always make the best decisions for her despite what anyone thinks. Here are some pictures of the patient on Monday!