Funny baby

Appointment day

Bamming toys together - who knew that was considered PT?

We had 2 appointments today. We saw M's pediatrician. He has gained weight! He is now 14 lbs 14.5 oz which may sound tiny for an 8 month old but he is on the growth chart! He fell off months ago but is now in the 1st percentile. I couldn't be more proud! Of course my happy bubble popped when his ped mentioned something after stating she is happily amazed how well he is doing considering his HLHS. She said when she hears HLHS she always prepares families for the worst because out of 7 patients she had with HLHS only 2, Macsen and a little girl we've met named Lucy, are the only ones still alive. POP! Coincidentally, we are the only 2 that didn't go to UAB for our baby's surgeries but chose to go to a heart center with much higher surgical volume/experience. But hearing her say that, that her statistics with HLHS children in this area - being treated in this area- are so low -  less than 30%- made me want to pack our bags and fly to CHOP. It's now been almost 4 months since he's been seen by his team up there and I am feeling insecure now, like we'll miss something here. Families that live nearer to CHOP are commenting on their day long clinic visits with their neurocardiac teams and I am feeling like I could be doing more for Macsen to ensure he's getting the best care. I will email his card up there just to see if there are things we can check from here or if we need to consider another trip up north in the near future. I know he's growing - finally - and I should be happy.... I AM happy I just want that piece of mind I get when I know I have done everything I can to make sure he is ok. 

His PT went ok- he missed his morning nap since we had that earlier appt and he was cranky - he still smiled and worked really hard but he was so worn out after. She does a lot of chest stretches and scar massage and I almost feel like he was sore. He slept for a while on the way home but was so overly tired it was hard for him to fall asleep tonight. He was so unhappy I didn't want to put him through me leaving (it was my night to go to our awesome mixed martial arts class) - I know he would have cried until I got home so Aaron got to go instead - lucky. I love that class. M and I took a bath, put some soothing sleep inducing essential oils in our diffuser and he seems to be sleeping pretty well now. Phew. 

Last night he woke up and wouldn't go back to sleep.  After stopping the movie for the 10th time to soothe him I brought him out and he had his first late night movie date with mom and dad. It was funny - a zombie movie called "Warm bodies." M was entranced - thrilled to be up with the grownups past 7 :)

Dreamed of my old cradle

I dreamed of my old cradle last night. It was my dads - and I think maybe his dads- when he was a baby - which sounds unsafe - but the entire thing was made of tightly woven/welded metal - like lattice but with wire - no room for baby heads or hands to get caught. We all used it but I guess it has been lost all these years later. It rocked, was very sturdy/heavy, was big enough so the baby had room to move but small enough to go by the bed.   It's crazy when you are dwelling on something - trying to figure out some way to help Mr sleep- and something shows up in your dreams. Something you haven't seen for 30 years. Macsen still rotates between his swing and our bed all night. Trust me - I've read the parenting books and my girls never slept in their swing at night but they didn't need to. They didn't retch and choke and need to be propped all night either. And if, like someone commented, he needs a swing to sleep when he's in college (oh to know he'll be with us that long!!!!!) I'll buy him a hammock. Sorry so touchy - lack of sleep is not my friend. At 8 months old he is only 14 lbs and still eats every 2 hours or less. He is still slowly gaining, and besides after surgery has never lost weight so i don't want to mess with his need to eat often. Heart baby's need up to 50% more calories then healthy babies. He needs his calories but I need sleep too. Still not a cuddler like our girls who could sleep as long as they were touching me I think he may sleep better in his own space-- or that's my current theory- and by better I mean anything longer than an hour. We have tried our old co-sleeper - basically a pack and play attached to our bed- but because he kicks and flails in his sleep he wakes himself up in it - it's not very sturdy and is very.... Zuzzy.... Like running your fingers across tent material... Loud. He has a crib all set up in his own room but because he still wakes so often, often needing me to swoop him up because he is choking, us sleeping in different rooms is out. Bring crib in our room? No says Aaron - too big.  Lately i feel like my brain is a sieve so its nice to know its trying to work for me:) Reminding me of my cradle.  I'll troll Craigslist for a cradle - maybe this will be the magic bullet that helps him sleep more peacefully. I can hope.

Besides the sleep issues and retching/vomiting Macsen seems great. We are working everyday on sitting, rolling, tummy time (which gets a little more bearable each time) reaching his arms overhead, and trying to get him to stand. Baby food is tough - he gags constantly and often ends up bringing up everything over a fleck of puree swallowed sideways. He loves cups - reaching for mine  and softly hooting to let me know he wants it. He loves  to take sunglasses off me and will gently hand them back so I can put them back on - over and over. He also loves to pretend to throw things out of the tub - cackling and mimicking me when I wag my finger and say "Uh, uh, uh."
I am going to try to make some lactation cookies because after months of barely eating 20 oz/day Macsen is consistently eating over 30 - of hindmilk. And because I have to pump for him my body didn't get the memo yet that he needs more! So I'll pump more often, drink more water and try these cookies http://www.mamaandbabylove.com/2013/06/06/amazing-delicious-gluten-free-lactation-cookies/ The ingredients were crazy expensive - priced almond meal lately?- and Aaron kind of freaked at checkout but its make more milk or start formula which is probably pretty expensive too.
We have a pediatric appointment on Monday. It's been a month and his dr would like to see him, hold him, cuddle him :) Then we'll go to his PT appt and show J how hard we've been working.
Video of MrMan laughing

PT and progress

Mr.Beautiful 8 months

We had our 3rd physical therapy appointment today. I like them - i like to watch the therapist "play" with Macsen all the while working in core strengthening moves. She also does scar massage and stretches his ribcage/arms. He's a funny baby though. The therapist today kept trying to get him to sit unassisted for 5 seconds - he would always lurch sideways, forwards or backwards right at 4.5 seconds so when we finally got 5 seconds we applauded and moved on to baby push ups. At the end of his session she had to fill out his report and he sat for at least a whole minute... perfectly still, and unassisted while here attention was on her paperwork. He is making big improvements in his ability to tolerate time on his stomach and chest and today, for the first time, he rolled back to front to back to front all the way down the mat. We are still working on getting him to bear weight on his legs - when we try he just wants to bounce then buckles. But he'll get it. I missed the sweetest little walker on Craigslist that looks like a classic car - oh well. I'll keep looking.

We have also set our dates when we will be in Rochester, MN visiting the Mayo Clinic to participate in their research on HLHSers. They currently have 3 research studies going on that we will taking part in. Here is a link to those 3 studies: http://mayoresearch.mayo.edu/mayo/research/hypoplastic-left-heart-syndrome/index.cfm 

We spoke to their head researcher Dr.Nelson last week. He is working very hard to try to find something to help bolster HLHSer's hearts, specifically their overworked right ventricle, to postpone the need for heart  transplant. It was great to talk to him about my fears for Macsen - his overworked heart, the invasive and often destructive practice of diagnostic heart catheterizations (which blew 2 veins and 1 artery in Macsen's legs before they were able to finally gain access to his heart - a practice that doesn't take long before there are no longer viable access points. The Mayo Clinic is working on MRI imaging that may be more accurate and less damaging then caths. It's an amazing feeling to know we are on the cusp of so many innovations that will probably help Macsen stay healthier longer. 

Today the same clinic just announced that they will be using stem cells harvested from the baby's cord blood (something I kick myself for not doing but we were discouraged from doing it by CHOP) and injecting those cells into the baby's heart at the time of the 2nd surgery to try to heal some of the damage done from working so hard. They will start doing it soon! They have been approved. It is something I understand has been done in adult cardiac patients with stem cells reprogrammed from the patient's bone marrow. It's funny how things done in adults aren't automatically done/approved in children. It's a whole other process. Here's a link : http://www.startribune.com/lifestyle/kids-health/210778971.html

I chose to focus on the hope and the progress rather than the statement that some research shows only 50% of children with HLHS make it to their 5th birthday :( Insert fingers in ears (or eyes) and repeat after me "LALALALALALALALALALA I can't hear you." And that's how we roll around here.