Future worries - this is a tough one

Feeling sad today.
Before Macsen's birth and before his first and 2nd surgeries I did lots of research. I studied up on the Norwood, the Glenn  and Hemi Fontan. His next surgery will be the Fontan. Click here  if you would like to a watch a video explaining this surgery(http://www.youtube.com/watch?feature=player_embedded&v=mu_amCCD8gg)
Yesterday, another heart mom shared this webcast presented by one of the cardiologists from the Sibley Heart group in Atlanta. He follows adult heart patients - ones who were born with heart defects and have gone through the 3 staged surgeries, like Macsen. Since the surgeries are only about 25 years old his patients are some of the first survivors. They are in their 20's and many are starting to show real signs their bodies and hearts are rapidly declining. These surgeries are palliative but not a cure - they relieve some symptoms but don't fix his heart. Some of the leading pediatric cardiologists in the country refer to the circulation created by theses 3 surgeries as "failed circulation." Deoxygenated blood is rerouted so it can passively go back to the lungs - alleviating some of the work the already stressed heart has to perform. But when you couple an already overworked heart and it's rising pressure with a passive system trying to get blood from the lower half of your body to your lungs you get back up - blood backed up to your liver, kidneys, bowels.
 Don't watch this video if you are the type of person who would rather focus on how well Macsen is doing and not dwell on his future and what he will likely face. No shame in that - it doesn't help anything to worry and I completely understand. I almost wish I hadn't watched it. Except..... except it just drove home for me how much work still needs to be done to develop better ways to help babies like Macsen. More research needs to be done, more testing, more innovations, more funding. They have come a long way - 30 years ago our only option would have been to bring Macsen home and try to fit a lifetime of love in the days or weeks until he passed away. Now we have hope and he's doing so well. We just need to keep pushing! Already with stem cell research and the (albeit theoretical) addition of tiny impellers or pumps to help move the blood along we have an inkling of what may be developed. In 20 years who knows what innovations will be discovered. We are depending on them for our son and they can't come soon enough.

 Click here to view the webcast. FYI - It is almost an hour long and it made me cry. Just sayin'
 http://vimeo.com/12052131

Pediatric Appointment Today

Macsen doing the Itsy Bitsy Spider

Macsen had his last Synagis shot for the season today - it is supposed to prevent him from getting RSV, a serious virus that can cause lung infections in at risk babies like MrM. For those of you just tuning in, despite having several of these shots Macsen still got RSV while he was inter-stage  at his most vulnerable, and he fought it off - maybe thanks to the shot. He doesn't appreciate the importance of this shot and was so unhappy after he got it today - crying all the way out of the building. I'll be glad not to have to put him through that again - at least until cold/flu season rolls around again.
He weighs 13 lbs 1 oz now and I know I should be overjoyed - he's gained - yay. But I am frustrated. Post Glenn (or second surgery)  life was supposed to be this land of milk and honey where Macsen would want to eat and would gain like ... well... like an almost normal baby. Where he would tell me he was hungry and I would feed him. Where he would start sitting on his own and start to bear weight on his legs, ready to stand. But he's not there yet and I have to look hard at myself and wonder why I am not ok with him just being happier at this point, not ok with him just being alive?! Why all this pressure to meet these guidelines, these milestones meant for a baby with a  whole heart who hasn't been put on bypass and had his heart stopped twice? Had his chest opened and wired back together twice? I see other babies younger than him who have 10 lbs on him, who are doing all the things on the chart and I don't want to put Macsen next to them - don't want him measured and judged. Don't want to hear the incredulous note in people's voices when they say "He's how old? He's so tiny." And I see other babies - ones with HLHS like him who are gaining weight - some get by with adding calories to their milk but mine is already so high our Dr thinks this might be too hard on Macsen's tummy. Others have feeding tubes in their nose, or in their stomachs, some right into their intestines and they are gaining and are on the stupid chart and I wonder should I push for that? His pediatrician says no - he is gaining - maybe slowly - but still gaining and not losing. I just don't want my fear of tube feeding to affect his growth for the rest of his life - keep hoping this week will be the week he'll start to gain. But we are 9 weeks post op tomorrow and he has gained less than 2 lbs. He's eating around 25 oz/day of approximately 30 calorie/oz breast milk and that is good but his heart rate is still high - still in the 120s and 130s at rest despite being on enalipril- maybe that's why? I will talk to his card about it on the 20th when we go see her in Pensacola.
We no longer have the scale here at home - there's one on amazon that is around $30 - but I am not sure I can go back to the counting grams gained/lost game I played for months - it ruled my life and made me nuts. And I just need to let it go - sheesh! He's eating. I still have to coax him and keep track of every ml he takes in - looking for signs he's not doing well - not that I report it to anyone, just for me. And I still freak out when he takes in less - offering his bottle so often he's become a champ at batting it away, pursing his lips and turning up his nose. Aaron thinks I'm a nutcase - getting angry at me for the miles of worried paths my mind wanders down everyday - examining the possible reason for every little nuance and difference...  slept more today, slept less today, cried more, cried less, spit up more... you get the picture. "Let go" I tell myself "what will be, will be no matter how hard I worry over it the outcome will always be the same regardless" but at this point telling me not to worry is like telling me I shouldn't blink... I need to work on it. I will talk to his cardiologist about his weight and if she is ok with everything I vow - yes, I said vow - I vow to let some of this weight driven angst go.
A happy bit of normal - today was the girls' first gymnastics class, first class of any kind since ....well, since Macsen. They loved it. C went through a little separation anxiety - worried when she found out her little sister would be in a separate class next door. She said "we haven't been apart in so long" and it has been over a year. She looked around at the other 6 year olds, a little unsure, hugging her water bottle to her chest. She has been so strong through everything - she's very sensitive and I'm sure I am not the only one who worried her tender heart would be overwhelmed with all the stress our family has been through but she has been incredibly tough - rolling with the moves, the hospitalizations, the separations, the unknown, the fear. I am incredibly proud of her. K is a rock - hardly ever fazed by much - she has been more affected I think. She was a baby when all this began - a young 3 yr old, Mama and Daddy's baby girl still needing to stroke my neck to fall asleep - now she's a big 4 year old girl, so much taller, more mature, more confident, louder :) she strode into her class with not even a glance back but rushed after her class was over to watch the last minutes of her sister's class. They are both so wonderful with Macsen - he adores them and has started softly hooting at them when he hears them in another room. He also does the same thing to the dog.
So, outcomes from the appointment  today? We will be taking M to get evaluated by a physical therapist who will hopefully help us help him sit and stand, give us some games and exercises to do with him. I also asked about respite care - a nurse that could come watch Macsen once a month or so so Aaron and I could have an hour or 2 together. I may be out of luck with that one and that's ok. It's just impossible to leave M with a regular sitter- not only is it risky for him it would be terribly stressful for them too. I admit I would have been afraid to watch someone else's heart baby before having Macsen. And like I said not a big deal - I am not totally sure I would even be ok leaving him at this point. We are 2 months post op but it is hard for me to let go of that feeling I had when  he was in the hospital, in pain, so vulnerable and I couldn't hold him - makes it really hard to ever hand him over to someone else and walk away.... even now.

7 weeks post op

Hi All,
We have indeed been busy - enjoying our growing (albeit slowly) baby, our girls, our camper, our life.
We pulled the camper to Ft Pickens to camp for 2 nights before Macsen's  Monday Cardiology appt last week. We all had a blast. Walking around the old fort, roasting marshmallows,  finding shark eggs on the beach. So cool. He had an echo which looked good according to his cardiologist. He refused to give up a good blood pressure and his pulse ox was 75 which is about 10 pts less than preHemi surgery. He is still adjusting to his new circulation. He was 12 lbs so slowly gaining.
He now has a cold - the last of us to get it - it took me 2 weeks to shake it and his sister K still has it - lots of snot and a persistent cough.  I have had to break out the Nose Frieda again which he hates but really works to get all that phlegm out so he can breathe. We are supposed to go to the Georgia RenFaire this weekend - a yearly trip we are thrilled to be able to do this year. But if he gets worse we'll have to postpone.