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