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!

Busy...busy...

We have been pretty busy, well more than usual, with doctors appointments, getting ready for Molly's party, Early Intervention and every day life. We had an appointment with the GI doctor on Monday. We had a lot of questions that we had come up with after we met with the general surgeon. I don't know how it's possible that we had any questions left since this is next surgery is all we talk about and think about but we managed to come up with a few more. I think some people might be a little confused about this surgery. This surgery is 100% elective at this time. Some hospitals don't even do this surgery until the person has developed a complication and it needs to be done. Just because we have this surgery done doesn't mean that she won't develop a complication. Her intestines can still twist or block. It is not guaranteed. It's not a "fix" it's a "hopeful preventative procedure". Some people are malrotated and never even know it. You don't show symptoms until something happens if it ever happens. We would be taking a huge risk with this procedure. So we sat down with the GI doctor, Mike Manfredi. He is wicked nice guy. He hasn't seen Molly in about a year and was very surprised to see how great she looks. He even said that you would never know that she's been through all that she's been through which is something I say all the time. If I wasn't scarred for life I wouldn't know she had tortured us all of those months. So our first question was "What is the benefit of doing this procedure if we are going to have to monitor her just as closely after as we do now?". His response was that he is an advocate of this procedure because if you know about it, do something about it. He wasn't in any way trying to force us to do something that we don't want to do. He explained how there is no guaranty it will work or that she won't develop post op complications. We explained to him that from a cardiac standpoint she is amazing, she's not on any cardiac medications other than Asprin and brought him up to speed on her developmental delays. We explained our concerns about how this major abdominal surgery will set her so far back with her standing and walking. We feel that she is months away from walking and this will make it so difficult for her to do. We explained how we have been through so much already and we know what sepsis looks like, how easy it is to develop a blood infection, or any infection really, in a hospital and how that scares us so much. If we hadn't been through all that we have then it might be a different story but we have seen her go through so much and to know we could be in the hospital for an extended period of time isn't what we want to deal with right now. We not only discussed the reasons why we didn't want to move forward. We also explained the reasons why we were for it. We had that scare back in November when she ended up in the hospital. The entire way to the hospital I was thinking to myself "why didn't we do the LADDS?". If she starts vomiting again am I going to feel that way? Probably. But at the same time if we move forward with it and she vomits I'm going to think to myself "why did we put her through all of that if she was going to develop a complication?". See, there isn't an easy answer. They had determined that Molly was malrotated through imaging. It wasn't very clear if she really was or to what extent because the imaging wasn't clear. It's difficult to determine in a child with Heterotaxy because their anatomy is so unique. Molly's liver is midline so it blocks a good portion of her intestines. Jay asked if we did the imaging now would it give us more answers since she is bigger. He is going to speak with the general surgeon to see if that is something he would want but he thought it was a good idea. So we wrapped up the appointment by Dr. Manfredi saying that he thinks we should hold off for now. We have too much doubt and she has been through so much. She hasn't had a break from procedures since she has been home. She was bronched a few times, decannulated, then this recent surgery. He thinks we should take the summer, let her be a kid, put this out of our mind (but keep an eye on her as always) and enjoy her and he will support our decision. I think that's what we needed to hear. Molly doesn't vomit unless there is something wrong. If she vomits we would take her to the ER anyway so we know what to watch for and we will. So we are just waiting to hear back on the further testing but for now it's a no go on the surgery. We also consulted with the cardiac attending that used to take care of her when she was in the CICU and he also supported our decision which made it easier to make the decision. Some people may not agree with our decision but it's a decision that we feel comfortable with and we always make the right decision medically when it comes to Molly. Next up, Growth & Nutrition. SUCH A WASTE OF MY TIME! Our appointment was at 1p. First we speak to the nutritionist. She was happy with where her weight is. She gained a few ounces since the last time and that's what they want her to do. She was gaining too much weight too fast before. We have to cut out one more of her gtube feeds. Right now she gets 3 and we have to cut it back to 2. The hope is that she'll want to drink more and eat more by mouth. I don't know how much more she can eat by mouth since she will only eat yogurt and pureed foods. I feel like her feeding is so controlled and they need to just let her be. Let her progress at her own pace. She's getting the proper nutrition, continues to gain weight and is healthy. Then we waited about a half hour in a tiny room (thank goodness for the ipad) and the doctor came in to go over her history and meds...again! Then we waited about 45 minutes. At this point it was about 3p and Molly had fallen asleep. The feeding specialist came in and wanted to see her eat. No way was I waking her up and she wouldn't do it anyway. She didn't have anything to add and didn't have any ideas. I know that Molly is a unique case but I find it so hard to believe that she is the only kid that has trouble coming off of purees. So now they want to add a behavioral specialist to see if they have any ideas. I am so close to saying, forget it I'll do it myself because I've been doing it anyway and got her this far. Anyway, she's in the 7th percentile for weight, almost on the chart for her height and weight for height she's in the 73rd percentile. Like everything else, she will catch up! So for now we are going to get back to our party planning and enjoy every second of our Molly time! We just love her so much and want to make sure we are doing the best thing for her! Kerry

Time flies...or does it?

It just hit me the other day that Molly is going to be 2 in 2 weeks. I'm sure for most people the time flies by when their baby is a baby but for me, the time hasn't gone by very fast. Not that I'm complaining because I'm trying to soak in every single second I have of her being a little girl and still loving me. I know it's only a matter of time before she is throwing fits and telling me how much she hates me. We have already had a taste of what her teenage years are going to be like. Both of our Early Intervention specialists told me this week that I'm in trouble because she slapped them, pushed their hand away and flung the book they were trying to show her. She wanted to flip the pages herself and they wouldn't let her so she pitched her fit. She's always been great at telling us how she feels and what she's thinking.

Not a whole lot is new. Molly has been doing really well. Her incision healed up nicely. We had a few nights when she was waking up crying and scratching her hands. We tried everything and she would only stop when she woke up completely from her sleep. It went on for a few days then just stopped. We will never figure this kid out and I don't even know why I try! But we are beyond that now and waiting for the next piece of puzzling behavior. She has been crawling around a lot more. She gets up on her knees and pulls herself across the rug. I tried to record her doing it but of course she doesn't cooperate with me. See, more rebelious behavior. She also is able to go from her belly up to her knees. She's done it a few times now. She did it once during her hand scratching episodes and I kind of thought she might be possessed because when I went into her room she was doing it in her crib and I had never seen her do it before. Then she did it tonight when she was playing on the floor so I'm OK now. She's not possessed :) She also got a bike for her birthday from my parents. Since we are having some nice weather they gave it to her early so we can start using it. She LOVES it and she looks so stinkin cute riding in it. She is like a little queen sitting in it letting me push her around. When I stop she does this "giddy up" type thing for me to get going again. I don't know if it makes me more happy to see her happy or to be doing normal 2 year old things. Then we stop to talk to someone, they say hi and she says "ahh" and I'm reminded that there is nothing "normal" about her. It breaks my heart for a second but then I get over it and know that some day she'll say "hi" and a million other things and I'll be begging her to be quiet. But until that day comes she can say whatever she wants, as many times as she wants, as loud as she wants.

We have an appointment on Monday with her GI doctor. I'm a little excited because he hasn't seen her in over a year and I always like to get the opinion of people that have known her since she was sick. We are meeting with him because the general surgeon wanted him to see her in case there is any other abdominal procedure she would need to have done at the time of the LADDS so he's only in there once. She would have to go through a series of tests to see if she refluxes, etc. I'm glad we set this appointment up because we have some questions for him before we make a final decision on this next surgery that keeps haunting us. Hopefully we'll get some answers on Monday which will help us to decide and put this behind us. I'll update after the appointment. We also have an appointment with Growth & Nutrition on Wednesday. I love when we have to make 2 trips into Boston in the same week because we couldn't coordinate appointments. I was speaking with Early Intervention the other day and I was explaining how frustrating the feeding part is for me. I feel like all I do is feed her baby food, yogurt and give her juice. Yes it's great that she eats that much and drinks now but I want to know how to get to the next step...table food. So after going over everything..things she won't eat, certain behavior, what she will and won't put in her mouth we think we have some kind of answer. She has a sensory/texture issue. I'm going to speak to Boston and see what they think and if they have any tips on how to get her to overcome this. If she wasn't so stubborn...

That's about all for now. I hope everyone is doing well. Here are some pictures of Molly enjoying her wheels!

Kerry

Home again...home again...

Wednesday started very early for us. We woke up at 5am. I let Molly sleep until 5:45am. Luckily she woke up in a great mood. We left for the hospital at 6:30 and stopped at Dunkin Donuts and we were on our way. We had to be there by 9am and we knew would hit traffic which we did. We arrived around 8:30. We checked in to the pre op clinic and they said they would call us back in about 10 minutes to check her vitals, give her her ID bracelet and allergy bracelet. About an hour later we still hadn't been called back so I went to the desk to find out what was taking so long and they had a few emergency cases that had to go first. Now it's almost 10a and they still hadn't called us back and she was going to the OR at 10:30. Finally a child life specialist asked if we had been seen yet and we said no so she went to find a nurse and she said the OR was ready for Molly so they were going to rush us back. She started crying the second we went into the room. We went through her medical history (which isn't a quick conversation), checked her vitals and we were on our way. They walked us down to the pre op area where Molly changed into her scrub pants and johnny and I suited up to take her back to the OR. We met with the surgeon, anesthesia, signed the surgical concent, went over what they were going to do and we were ready to go. We were also told that her medical chart is longer than War & Peace and weighs more than Molly does. I walked Molly back to the OR. I was so nervous this time because every other time she had a procedure done she was either already intubated or had her trach. This time they had to intubate her once she was asleep. I knew medically there was no reason she wouldn't be able to extubate but I just had flashbacks. So we were in the OR, I sat her on my lap, they put the mask over her face and she started screaming, kicking, pushing their hands away from her, it broke my heart. She finally fell asleep, they took her away from me, I kissed her on the cheek and left her in the hands of all of these strangers. I teared up as I walked through the hallways to meet back up with Jay but I refused to cry. Why should I? She had been through so much worse and she was going to be just fine.

They walked us down to the surgical waiting room where we met up with the nurse liason. She told us the surgeon would be out in about 45 minutes. So we waited and waited. After an hour I started to get nervous. We were originally told it would be about an hour and a half but she said 45 minutes so after an hour I checked in to find out what was going on. She called the OR and the surgeon was still working on the trach site then he was going to do the bronch. He said it should be about a half hour. Well, 30 minutes passed, then 60 and now I'm really freaking out. It's not like me to pace or to be a pain but I hunted the liason down again. She was going to call back. I went back to my seat and waited and a doctor comes out, not our surgeon. She was from audiology. They were doing a hearing test on Molly because she had never had a newborn hearing test. We were more concerned about her heart than her ears. The pediatrician had some concerns about her hearing because Molly isn't talking yet, plus she's been on a ton of meds and that can effect her hearing. I explained to the pediatrician that there is nothing wrong with her hearing and she doesn't speak yet because she was decannulated in August. Again, she doesn't have any experience with kids like Molly so she doesn't understand. Anyway, she has perfect hearing in both of her ears so we can stop worrying about that. We were so excited to hear this news! Not many things with Molly have gone the way they were supposed to the first time. As excited as we were we still hadn't spoke to the surgeon. He was supposed to come out before Audiology. Apparently he was taking his time. He finally came out and said her airway looked "OK", her site is closed, he cleaned her ears out for the hearing test and she did well. Of course we hang on to every word. We didn't like the he said her airway looked "OK". To us that sounds like there could be something wrong. We heard that word too many times in the CICU to know that it doesn't mean great. Turns out this surgeon is just a dink and there is nothing wrong with her airway. So we can officially scratch ORL off of our list of clinic visits. He said that Molly was in recovery which confused us because we were told she was going to the Cardiac ICU. Well, she ended up going to the floor instead which didn't make us very happy. We like the CICU. That's what we are comfortable with. There are too many sicknesses on the floor. But we went. It was only one night after all.

So we met Molly in recovery. She was very heavily sedated. She got a TON of sedation. The problem with Molly is that they want to see an immediate response when they give her a drug and she doesn't respond immediately. They gave some sedation..nothing, gave her more sedation...nothing, gave her more sedation and it all hit her at once. Well, what happens when you give a baby all of tha sedation and it hits them? Their blood pressure drops. She usually sits in the 90s and her blood pressure dropped into the 50s so they had to give her Dopamine to bring it back up. They also had a little trouble with her airway. She was bronchospastic which is when the airway narrows. They said the reason for this was because she had a lot of secretions. They gave her something to open her airway back up. So when you wonder why we get nervous about a simple procedure these are reasons why. There's no such thing as a simple procedure with Molly.

When we were finally able to see her she was so out of it. Her eyes were open but she was really groggy. She was so thirsty. I've never seen her drink so much. She was on oxygen and every time we tried to take it away her sats would drop. She usually sats 97-100 and when we took the O2 away she would drop to 93. It took her a few hours to no longer need the O2. Once she was awake she didn't require any pain meds or Tylenol. She is a trooper. We got to see some of our old friends. Some of the nurses that used to take care of her, her cardiac surgeon and a few other people. It's great to hear what they think because we see her all of the time. One of the cardiac fellows stopped in and was amazed at how well she looks. He said that they don't often see a baby that was there for as long as Molly and turns out to be a "normal" baby. Her cardiac surgeon said that she is their prize possession. It's just so great to hear. We know that she's special but we just assume that there are a lot of success stories like her. Sadly I guess there isn't. We were discharged on Thursday and she came home and took a nap but she isn't in any pain. She's still not back to herself but she's getting there. We just love this little girl more than anything and we love Children's Hospital almost as much!

Thank you again to every one who wished us luck, kept us in your thoughts and prayers, checked in on her throughout the day, sent us text messages, emails and Facebook messages. We truly love you and love how much you love Molly.

Happy Easter!
Kerry