Happy New Year

Last day of 2013 and I want to remind myself of everything we have lived through this year, everything we have endured and more importantly all our amazing triumphs. It has been an incredible year. Living through interstage with Macsen so fragile - his mortality a constant newsfeed flickering across every moment in the first few months of the year. I can't think of that time without also thinking of how amazing our girls were - even when I felt I was falling apart, failing them,  barely hanging on to anything resembling "normal" with the weekly appointments to Dothan and Pensacola, the video appointments, constant record keeping - how much was he taking in, how often, how did his breathing look, how many grams did he gain today, how many lost?- and all they missed - birthday parties, kindergarten, playdates, friends- they never lost their love for me, or for him - our tiny little dictator.
In 2013 we made it through Macsen's second surgery which was so much harder for me then his first. It was easier to hand him over because after months of just trying to get him to his stage 2 surgery I was ready for him to be out of this perilous interstage period. But it was so much harder because I could see his pain, feel his unspoken questions, and for the first time I could see the fear he felt in anticipation of procedures, blood draws, xrays and just letting drs listen to his heart. And I had to help them. But he made it. An incredible moment and we were able to start a new normal - less appointments, more contact with the outside world. The girls started school and love it. We have gone camping. We have gone on a few fun filled family trips to a children's museum and the beach. I have started playing roller derby which has been an unexpected, yet sorely needed, place of respite for me and joy and awesome cardio. The children are all growing - every day an amazing gift with their quirky senses of humour, creativity, kindness and even their rage, indignation, normal selfish moments - I'll take them all. One thing I have learned from 2013 is the good moments are so much sweeter, so much better, so much more precious because of the bad ones we have lived through. Happy New Years everyone. May 2014 exceed all your hopes and dreams.

A good week

Macsen has exploded this week in new things he is doing. It's funny because he just popped his first top tooth - 4 bottom teeth including 2 molars that were not fun - and now finally 1 top tooth. He has started imitating animal sounds - like the monkey that circles over his changing table and a dog barking. He also will sign "bird" for the one on his changing table mobile (we spend a lot of time on there:) and "all done." He has also started making adorable noises that sound like he's talking without words - mainly when I think he is trying to say "Thank you." He is doing super silly things too of course - like using his spoon (covered in chocolate yogurt) to brush his hair (caught it on video) and putting things in his mouth and calling me to come get them out. It's a game he made up where he puts increasingly larger things in his mouth and mumbles something resembling "Mom" and I have to come and accept the item and say "thank you." Then he will get a slightly larger item until he has worked his way up to something pretty big - say doll furniture- and I have to come and get the dangling dining room table out of his clenched lips and say "Thank you."
His early intervention therapists visited today and he interacted with them the whole time. He likes to include everyone when he plays so for example if you give him a ball he will throw the ball to one therapist and when she throws it back will turn  to the other and wait until he has her attention and then throw or hand it to her. He's very deliberate and insistent so even if one is writing something up he will wait until she takes the ball. He is pulling to a stand really well now and cruising on the furniture. He can also let go and transfer to something else if it is close enough. The physical therapist said he is at about a 10 - 11 month old's level in gross motor skills. He is improving everyday so I'm not super worried about it - he likes to play standing up, I don't think it will be long before he's balancing on his own. His sisters take him for a "walk" everyday around the house and he's started using things - chairs, foot stools, boxes- as make shift walkers - the real walkers we have for him are way too slippy on our wood floors - dumb design.
The great news is the therapist thinks he is WAY ahead on his cognitive understanding of language. She was very impressed she could talk to him and he understood and responded. He still doesn't really talk so to hear he is on track - or even better "advanced" - in his understanding is such a relief for me. She said she would just suggest something to him and she could see he was trying to do it - after only 1 time - pretty good for a 14 month old.
We also had to show the therapist how Macsen eats - she has been helping us work with him. And he impressed her - dipping his carrot stick in the puddle of humus and mostly getting some his mouth. He also took a few ml's of baby puree from a baby food pouch with a silicon straw attachment. She is trying to help him use a cup - he likes to tip it and get water in his mouth but then thinks it's awesome to not close his mouth and just let all the water run down his chin. So we worked on pushing his jaw closed around the cup and telling him to "close your mouth." Took him a few tries and he got it.
I hate to jinx us but I also think he is sleeping a little better (when he's not producing new teeth.) He'll wake to eat maybe 2-3 times/night instead of the 6+ times we've been dealing with for his entire existence. Some mornings I wake up and feel almost human :) Looking forward to the day when I am getting several hours of straight sleep at a time and my brain starts turning on non essential centers again - those not required for survival but sorely missed like creativity, wit, patience, memory... did I say creativity. Not sure if serenity would be one of those centers  but it is also missed - sometimes I feel like my emotions are so close to the surface any sort of turbulence and they are flying around the room, uncontrolled, hitting people in the eye and leaving me feeling unhinged. Sleep should help that right?
More great news today - our buddy Weston Keeton, who has been waiting for 2 out of his 7 years for a  heart/lung transplant at CHOP, far away from his home in Tennessee - just got the gift of life today - a double transplant. A grieving family, mourning the loss of their own child gave Weston, a stranger to them, this precious, incredible gift. It's going to be tough to adjust to these new organs and he'll needs lots of prayers. You can follow Weston here  https://www.facebook.com/groups/prayingforweston/

And here's a video of Macsen being silly

Crappy week

Typing this I can hear my 7 year old hacking away while she sleeps. The kids and I are all sick. Started as a cold last weekend then Wednesday we woke up with what truly felt like the flu. The girls were swabbed and came back negative but we've had fever/chills/body aches/extreme fatigue/head aches/congestion/wracking coughs/vomiting from the coughing - awful stuff. Though the girls and I were mostly fever free today the baby can't seem to shake it and moaned then fell asleep, moaned, ate, then slept, over and over. As long as his Tylenol is keeping his fever down and someone is holding him he can sleep but once that wears off the moaning starts again. His Oxygen levels have been dropping to the low 70's upper 60's when he's really upset and I'm afraid if it happens again we will have to bring him to the ER to be put on oxygen. His heart rate goes up to the 160's when his fever isn't controlled - usually 110's.  In addition to this virus he also got a molar this week (2 tiny bottom teeth and now a molar?) and a burst eardrum? It's been a hell of a week in other ways that have nothing to do with Mister so I won't go into it here - just ready for this damn week to be over :(

Happy Fall!

We have had a wonderful Fall so far. The girls love school - straight A's for C (big sigh of relief that I didn't let her down with the homeschooling last year.) they call K a "future CEO" at school because she is so calm and unflappable. Mister makes us all laugh everyday with his silliness. His new trick Aaron calls "the tripod" - he lies on his stomach, pushes his butt in the air until he is on his feet, then removes his hands so he is balancing on his head and 2 feet - and he wants to be tickled. So silly. He still kind of rolls most places unless he hears his Daddy get home then he books it army crawl style to the closest door to meet his dad. We have been keeping him out of physical therapy because he just can't shake this cold and he gets so winded at therapy. I know we need to bring him back but to be honest I don't miss those 3x/wk appointments and feel like I am basically doing what they were doing here at home. He's kind of stopped gaining weight which is pretty normal for his age - 1 yr olds don't really pack on the pounds but he needs to continue to gain - there is a minimum weight for his next surgery. We see his ped once a month again because it is RSV season and he has to get the monthly synagis shot and she isn't worried about his weight. I still worry all the time though - is he drinking enough, how much did he just vomit, how many wet diapers has he had, etc. He's still mainly just tasting foods - still likes "high taste" foods like humus and pureed chili over traditional baby purees, and he is getting better with the disintegrating food group - puffs and melts. He's such a character though - notice his far off look in the superman photo? He was mad at me for making him sit on the floor like a peasant while I Wonderwoman-ed myself up so all his Halloween pics look like this - pursed lips and refusing to look at the camera. Stinker. He can now sign ball - which  is his favorite toy group. He loves his little bathtub suction basketball hoop. He loves to put things in other things - balls through a hoop, blocks in a bucket, croissant in my mouth (true story.)  Now if we could only get him to sleep more than 2 hours at a time we would be doing great (read ME! I would be doing great.) Sleep deprivation is a strange disease - it strikes your memories and your creativity and your organizational skills. I would love to have those back some day :)

Crazy Baby.

Check out Mr being his silly self tonight :) he really is a nut

This week Macsen has just exploded - crawling, eating a little more each day, standing more, doing funny things specifically to make us laugh. He is a riot. He did well at his Early Intervention meeting - there were a scant SEVEN "experts" in the room - from speech therapists, nutritionists, to  social workers. He was still getting over croup (which steroids were needed to help him overcome the strider in his breathing) and was not his normal flirty self. In addition he was refusing to open his mouth because he just got his first tooth! He now does this pursed lip smile - I think it's just his attempt to keep me from catching a glimpse of that tooth! He ate a little for them and they would like me to start transitioning him to a sippy cup. I hate to do that because I feel like he has just now really mastered drinking really well and is slowly gaining - finally over 8 kg! - and I don't want to mess with him.
When visiting his pediatrician last week she said she felt like if you didn't know him - were just meeting him- you would think what a perfectly delightful 8 month old. It is tru he reminds me of where his sisters were at 8 months which makes sense for all the sedation he's had and the healing he has had to focus on. And now he's ready to start developing. I am so very proud of him. He worked so hard to learn to crawl and now he has it. Sigh. I couldn't be happier :) That being said I'm just not going to stress the tiny amount of baby food he eats - he is finally voluntarily opening his mouth for a few bites before he's done but I'll take it.

So proud!

Check out our little man! After 4 months of physical therapy he is finally doing it! He's crawling!

Moving right along

We have been so busy with school starting, Macsen's numerous appointments, keeping up with our prolific poopers (2 new cats and the dog who has decided pooping inside is  just as good if not better than pooping outside) and my new much needed outlet - Roller Derby. Life is just moving right along and it's pretty great - minus the poop.

Macsen had a great time at his birthday party. His cake, made through a national charity called Icing Smiles and a local baker Tara @ Foster Street Bakery, was just beautiful - and dairy free! So he could attempt to eat some of his icing which he did with only 2 gags and no pukes, and I got to eat some too. My favorite part of the party was when everyone sang Happy Birthday.... He looked from face to face acknowledging everyone there  and I like to think he was thanking everyone for all the ways they have helped him and us over the past year. Every day I thank God and our community of friends for getting us to PA. We really have had the best case scenario during our journey with HLHS and I have no doubt it is because of the expert care M has gotten from day 1. 

We are currently in the car on our way to another appointment in Pensacola so Macsen can have a swallow study done. He still cannot eat food - only drinks breast milk - and he gags and vomits on even the tiniest crumb or unpureed bit. His sisters were eating everything at 1 yr - mashing everything with their toothless gums. So we are trying to get to the bottom of it. First comes a barium/X-ray study where they will (attempt to ) feed him barium laced food then if that doesn't reveal anything they want to do an upper gi scope. Then lastly a more involved scope may be needed but we would go somewhere with more expertise with heart kiddos for that - sedation is involved and M has paradoxical issues with anesthesia. 

We are trying to plan a trip to CHOP sometime this fall so they can evaluate Macsen. They have a program for single ventricle kids that looks for any/all issues they commonly develop b/c of their circulation/multiple surgeries etc. Scheduling is supposed to call this week with open dates. 

At his cardio appt last week they saw a little decrease in function though not enough to warrant adding any heart function meds (he is currently only on aspirin.) 

44 miles to go before we get to PCola and M can't eat before this test. Might get dicey up in here!

He's 1!!!!

Busy Week

First week of school for C and K! They are both loving it - though this morning they were exhausted and ready for the weekend. Macsen misses them - hooting, looking around and waiting expectantly for them to come running and swoop him up.  I miss them too. The house is too quiet!

First day of preschool celebratory sushi lunch- now a Miller tradition 

(2 times makes it a tradition right?)

Milky Moos after-school ice cream trip with Daddy

And look who is 11 months old this week! Planning his birthday feels surreal.

Sad day

Today we had to say goodbye to our beloved Miette. We found her lying paralyzed in our yard. The vet found she had been shot with a pellet that lodged in her spine. It's been an awful 2 days.

We did get to hold and cuddle her and tell her good bye. We will miss her everyday. We were blessed with another 10 months with her and are grateful for that time together. 

Leaps and bounds

We have had a wonderful week. Macsen has finally started to bear a little weight on his little baby feet :) he won't do it in your lap - only when HE wants to do it. Mainly when he wants to see where his toys have gone that he dropped over the edge of his tub. He scoots his booty up to the side, his legs in the butterfly position and pulls with his arms. He also will try to peer over the top of my bottom dresser drawer if I leave it open to see inside. Little booger is very curious! Another funny thing he does - when he is in the tub playing with his nesting cups he loves to place them on the side of the big bath and if there is a soap dish he will try to stand to get his cup up there! He has  started making a lot more noise - great noises like "ba ba ba" and my favorite " ma ma ma." The girls said "da da da" first so this makes me extra happy. He is sitting so much better - finally preferring to remain upright to play instead of trying to lay down. sometimes when he falls on his back he looks exactly like an upside down turtle - stretching his arms and legs, chin trying to pull his head back up to sitting. And he'll glare at you if you dont help him as if to say "A little help here!!!!" He will also put his arms out to be held, and plays tug of war with toys. He got his first normal, non surgical boo boo leaning over too far and bammed his forehead on the floor. Kismet and I cuddled and pampered him - both blaming ourselves that we didn't catch him.

Right now we are in Birmingham at the Science center and having an awesome time. This place is all hands on and really neat. We've played in giant bubbles, made huge smoke rings, pet stingrays and bonnet head sharks (always a big draw for C.)  I had to take a pump break so am sitting in the car while the fam keeps playing - I will definitely not miss pumping  once M starts eating other food. Still no news on the feeding clinic. 

Hopefully we can start working with them soon. He wants to eat - not puréed- but soft finger foods he'll put in his mouth, mash them then chokes and vomits when he tried to swallow them. I have cut out dairy again and had to cut out my milk supplement fenugreek because I think they were adding to his tummy troubles. We have gone down from 3-5 

massive bench clearing pukes to 1 which always seems to happen in public. Today it was in his sling after downing a record 7 oz in the science center... All over the carpet. Sigh. It seems to always happen now when he eats more than 3/4 ounces at once. I may talk to his drs about a med called periactin that helps speed up his digestion which may help with the huge pukes - a side effect is increased appetite which would be good. He's still barely over 16 lbs - having stalled again from all the puking. 

Here is a video I took of him talking on the 3 hr drive to Birmingham 

http://youtu.be/U0yNdHbGkf4

EI evaluation

Many weeks ago I contacted Early Intervention (EI) because Macsen is having trouble sitting and won't bear any weight on his legs. They had to evaluate him to see if he qualified - he had to be more than 25% delayed to be eligible for services. Well, yesterday we got the results and our little guy is pretty delayed - he's scoring at a 4 month level in some things up to 8 months. He just turned 10 months. Logically, it all makes sense. He has spent a large part of his life focused on healing from major surgeries so sitting and crawling were very secondary. But emotionally I am feeling sad and overwhelmed that he is so far behind. Things that just came so easily for his sisters, for other babies I know, seem extremely hard for him. Have you ever tried to teach a baby to crawl? To stand? Despite raising 2 other kids I never have. With the results come more appointments. Counting the 2 we have today we will have had 4 this week. He needs the help and I will do everything we can to get him what/where he needs. Just a few extra challenges. One of the biggest challenges isn't for Macsen or for me & Aaron but for the girls. During appointments, especially ones we have to drive to (Macsen cries, coughs and vomits if he doesn't have me sitting with him distracting him) they are stuck in the car - waiting in parking lots with Aaron and the DVD player on. Not exactly fun on a weekly basis. But they don't complain, sweet girls. I hope they don't start resenting him. One day, when M travels better,  I'll be able to make the trips to Dothan without Aaron so he can stay home with them.
His cardiology appointment in Pensacola on Monday went really well. He weighed in at 16 lbs putting him in the second percentile! He was very good during his echo - lying very still for about 90% of it. He's a very busy baby so that's quite a feat. His doctor said there was virtually no change from his echo last time. Great news! No tricuspid valve leakage. His BP looked good. ?His oxygen levels were in the low 80's - wish they were higher but they are still acceptable and pretty typical. We even took him off his heart function med and will go back to see her in September. The girls will be in school which will complicate our little "make every cardiology trip into a mini vacay" plan but we'll deal with those logistics when we get there. When I asked his doctor about the remnant of extra skin still barely visible at the base of M's neck she used a term I have never heard - asking every doctor/nurse/therapist that has ever treated him for anything. She called it a cystic hygroma and said it looked really good. Of course the googling began almost immediately and I have found a support group to ply with queries and questions. Got to love the internet! If you google it be forewarned there are some very severe cases/images that might make you very concerned for our little dude. Like I said his is almost gone and I am relieved to finally have a name and research to turn to for reassurance.
For now we have a few weeks left of summer we intend on cramming in another just for fun beach trip - no appointments!!!!!- a birthday party for C (7 yrs old!!!!) school shopping and a trip to Birmingham to the Mcwane science center. So excited!

Happy Friday

   We had a great morning playing with new friends today and Macsen showed off by rolling all over the N family's beautiful house. We met them at Moe's restaurant  in Enterprise because their girls and our girls started chatting. Sometimes I wonder how we met people before kids :)   Turns out Mr.N is also from Gig Harbor in Washington which is Aaron's childhood home. We also hung out with another great mom (coincidentally also from Washington) and her beautiful little girls who we met @ the Y while we were both pregnant last summer. So it was Macsen + 7 girls. He loved it! Here's the N family's awesome house - check out all the custom built ins and upgrades - I would love to do some of that to our house.

http://www.zillow.com/homedetails/202-Grayton-Ln-Enterprise-AL-36330/109258094_zpid/

   Another physical therapy appointment today in Dothan. M was tired from a morning of batting his eyelashes and showing off his mad rolling skills but he did his 45 minutes with just a little groaning and growling.

And we picked up a few surprises at Michaels for our Treasure box - a box of art supplies and special little gifties we use to reward ( read: bribe) the girls for extra hard work/extraordinary acts of kindness or cooperation. It's amazing what a tube of glitter glue can get you in this house:) Here are some of the girls' masterpieces from this week's homeschooling adventures

Mommy mermaid and a baby mermaid

C's fancy Mermaid

Macsen's new trick

Macsen is 9 months old now and really is a joy everyday. He smiles, chuckles, cuddles and hugs the whole time he's awake. Nights are still rough but we have started putting him in the cosleeper and he's tolerating it. It's propped on books and we have a pillow in there - a big nono I know but it keeps him propped so he doesn't aspirate on his ninja puke that sometimes surprises us at night - HI YA! He's chugging down the milk - still gags with food and won't take more than a teaspoon or so. He's rolling like a champ - back to front and front to back - and sitting for little stretches without toppling, and pushing up on his arms while on his tummy. I am so proud - he couldn't do any of these a month and a half ago! Hooray for physical therapy! We had an evaluation today with Early Intervention who will hopefully get us connected with other services to help catch him up. I'd like help trying to overcome his constant gagging, get him interested in eating, help him to learn to stand and bear weight on his legs, and start working with speech to help well... With his speech :) he squeals and screeches but he stopped saying vowels after his last surgery. All kind of normal for little people that have had multiple surgeries I just don't want to sit back and hope he catches up. He has developed a very convincing gag that he likes to do as his noise of choice. I think he likes to see us all jump up and come running with towels - waving our hands and shouting/pleading "No, no, no Macsen!" He has trained us well. Watch the video above or on YouTube with this link http://youtu.be/jE5saICjXAc
I was very disappointed this week to find out we were in fact NOT eligible to participate in the exciting HLHS research being done at the Mayo clinic pertaining to stem cells and regenerative therapies. Apparently after reviewing his medical records the pediatric cardiologist on staff felt his variations - specifically what he called unbalanced AV canal (referring to the fact that Macsen's right atrium is larger then his right vent - which we knew about we just didn't know there was a technical term) exclude him :( In fact, he felt that his defect is Unbalanced AV canal instead of HLHS - apparently 2 different defects with some overlaps. Yet again an example of how little standardization there is sometimes when talking about these rare defects. 1 doctor sees one thing and another sees something else. I was pretty upset with the new label - I know that is all it is and doesn't change anything- (Our favorite cardiologist still says its HLHS so there!) and not being able to actively "do something" to help speed up new therapies for Macsen... something he will desperately need.  Current practices and knowledge are better than 30 years ago but still not good enough to insure Macsen has the opportunity to have a full healthy life. I want to help make that happen. The researcher we were working with felt confident saying any new therapies would be applicable to Macsen - he just couldn't be part of the study. 
In happy news Macsen is now almost 16 lbs! We are enjoying our summer - swimming, camping, baking gingerbread cookies with the girls (they wanted to see if they would come alive and watched them for a full 5 minutes to make sure nothing moved before they bit their heads off.) Life is getting a little easier everyday as we all settle into the rhythm that is working for us. Aaron is FINALLY on day shift again - he's been stuck on night shift for 18 months and it was very hard on us as a family having him gone all night. Now he's here for story time with the girls and for all the various middle of the night criseses that are inevitable with 3 little kids. I am very very thankful to have him home at night :) Very very... Very

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.

8 months old!

Today Miracle Mac is 8 months old! Holy moly that's crazy! This time last year we were reeling from our prenatal diagnoses and the horrible meeting at CHOP when they told us he probably would not survive the pregnancy. I remember crying so much and for so long my eyes were sore. Today I held him in my arms and we chased his sister K all around the house - the three of us cackling and laughing like crazy. He bounced in his bouncer until his little legs couldn't bounce anymore. He held his tiny hand out and ran it through the hose water as I watered our new blueberry bushes. He is our joy and I thank God for giving him to us. 

This weekend we had to travel to Pensacola for another cardiology appointment. We camped near the beach and had a wonderful time swimming and gathering driftwood.  Macsen sat in the waves at the beach for the first time and smiled the

Most beautiful baby grin. His appt went well and we were able to cut out his diuretic completely and cut his heart med dose in half. He is still only 13 lbs but is the happiest, busiest baby ever! Friday we go for a physical therapy evaluation to see if he'll need extra help learning to sit on his own and bear weight on his legs. 

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.

Camping pictures coming soon!

We bought one! A camper! We had all but given up on finding one that could fit all 5 of us but still be light enough for our van to pull. We went to 3 different RV places, looked online, and had almost decided we would have to spend more than we really wanted to and get a Class C motor home to fit our whole family when boom - today on a whim went to a new place and there she was. Perfect weight, perfect size, bunks for the girls, a dinette/fold out bed for little man to sleep in that is right beside our bed. Kitchen and bathroom. Awning. What more could we want. And all under 4000 lbs. Aaron and I sat on the bed and said this could work. It's the first one we've seen that I could picture us in if that makes sense. C was in love with this beautiful big motor home that had 2 slides so there was a lot of open floor she thought was a perfect dance floor- that 's why she wanted it... For the dance floor :) it felt huge to me and i just couldn't imagine us in it. I thought she would bring it up - compare the 2 - but she didn't. She loved this little one right away. A lot smaller and a lot less expensive but perfect. So we putz around - the girls used the restroom in the camper store about 10 times, they spent ages picking out what to spend their quarter on in the candy dispenser (Mike and Ike's for K - which she shared with her sister- and a giant gumball for C- which she did not share with her sister.) we got a second look at the camper, a third look. we looked at all the others. The baby got hungry so I brought him in the van to eat, the girls watched a little "Wreck it Ralph" on the DVD player - and Aaron never came out. When Macsen finished eating I sent the girls to tear their dad away from the store - thinking he must be looking at all the MRE's and other survivalist supplies. He comes out and starts the van. I say "I really like this one. I can actually see us in it." He agrees, fills me in on what he and the owner discussed - financing options,. Etc. I tell him I am worried someone will buy it so he nonchalantly mentions we can put a hundred down to hold it - I urge him to, afraid someone will buy it and we'll have to order one - have to wait to start camping with the kids. He looks at me and pulls out the signed paperwork. Tadaa! And he laughingly says it was to be a surprise but I wouldn't stop with the questions :) love that man. Anyone who knows me knows I hate buying things - I am always afraid of making the wrong choice. We looked at dozens of other travel trailers and they all felt like someone else's. This one felt like ours from the start. Just like Aaron -he always felt like mine. We have been together almost 13 years - and married for 9. Today. Today is our 9 year anniversary. And it might sound crazy to some of you to consider your spouse just signing the paperwork and surprising you with a camper. But something told him this was the one too and he listened.
So soon, very soon (like this weekend if the girls have any say) we will be starting a new adventure - a fun one with campfires, s'mores, hikes, site seeing. We can bring it to Pensacola for M's appts and when he has to go back to CHOP they have 2 camping spots we can use so Aaron doesn't have to prowl the halls looking for a dark spot to sleep. And I think we can fit M's swing so he should be happy :)

Happy half birthday!

Macsen is 6 months old!
He's had a cardiology appointment and a pediatric appointment and they both think he's looking good. He went from 11 lbs 9 oz at his Monday cardiologist appointment to 11 lbs 14 oz at his Wednesday pediatric appt - different scales I know but hoping this is the beginning of easier/more rapid weight gain for the little man. We were even able to shorten his medicine list to just 1 diuretic 2x/day instead of 2- 3x/day. He really appreciates the change and we really appreciate not having to squeeze his little cheeks open that many times a day. That baby is a champion medicine spitter and it is a little know fact if you squeeze his cheeks open - like you're opening one of those old timey rubber change purses - he can't spit out the meds. Barbaric but effective.
He is just now on Enalipril - or as we have come to start calling it his heart vitamin- and Lasix, Vitamin D, baby aspirin. He still doesn't sleep much and I still feel like his head hurts him - he will wake from a dead sleep with a pained cry - though that could be his poor tummy. Mega dose of antibiotics during surgery may be good for keeping infection from his heart but not so great when it comes to his bowels. He has had crazy diarrhea for weeks. Time to get him on the probiotics I think.
I tried to feed him some mashed up egg yoke + breastmilk. He tried it then cried and went crazy until I gave him his bottle.
He is drinking so much better now. Not crazy amounts more - just more, and more at a time. He is also bearing a little weight on his legs - we put him in his jumper and he kicked his left leg a lot. Just not quite coordinated enough yet but he'll get it. He can lift both legs up and will grab his pants legs to pull them up close to his face - so adorable. He also sat up on my lap without being propped for a few seconds. Very proud of that. With his surgery who knows how long until his muscles are strong enough for unassisted sitting but he's getting stronger every day. His grip is getting stronger - he can snag a handful of his sisters' hair which delights them - wonder how long until that are no longer amused by this. He sleeps less during the day too - instead of at least 4 hour - 90 minute naps he'll take 4 little cat naps. He really REALLY loves music and will fall asleep watching his sisters dance to the Top 10 on Pandora.
He has also started stroking my arm when I hold him, stroking my face when I cuddle with him. That's also new - he would never be comfortable snuggling in bed with me but lately sometimes when he can't sleep any other way I can take him in with me and he will roll on his side, reach out to me, and fall asleep. This.... stops my heart.  For months I have longed for this and when he does it now I am afraid to move, afraid to break the spell that is keeping him close. It can be 6 o'clock at night - his bedtime - chosen and insisted on by him of course - and I will just stay, still as a  statue, scared to readjust my pillow and reaching out quietly for a sweater or teddy bear - something within arms reach- to put behind my head so I don't disturb this perfect moment with him, this gift. It will last as long as it will last- sometimes minutes, sometimes an hour and he will cry out - too hot to sleep so close anymore.

Happy Half Birthday my Littlest Love.

Home!

We are home and loving it! Macsen went crazy kicking his feet in his own bath tub. He also can't take his eyes off his sisters - watching them like he's trying to memorize their faces. He is also getting time with his Nana.
We had a fire tonight and roasted hotdogs and marshmallows. He sat in my lap watching our family - so content he fell asleep.
Thank you everyone for your support, prayers and well wishes. This journey has opened our eyes to many things but it's nothing compared to what it has done to our hearts. Mine has broken at least a hundred times since this all began last May - with every difference we discovered in Macsen's heart, every dream for his life we have had to give up, every procedure he has had to endure, every time we have had to stand helplessly by while he is hurt, every baby we have seen earn their wings... While Macsen is busy healing his heart we are busy healing ours as well. I plan on doing all those things I would regret not doing if we run out of time with each other - camping, dancing, painting, swimming, laughing, loving. Sure our bathrooms may need to be renovated and a deck on the back of the house would be great but would I regret not getting to those things? Or would I regret not spending the time and money enjoying my little family? Now I just have to convince Aaron we need a camper :) One big enough for Macsen's swing of course :)

Day 10 post op

We had a nice Sunday. We all slept a little better. We used the Benadryl for Macsen... decided if he could sleep he'll heal better and he does seem more like himself today. We went downstairs and a family had breakfast for everyone - pancakes, and fried eggs. We swapped out my broken phone for a new one at the Apple store - my 2nd replacement since we got them in May. It took 8 minutes though it took 2 hours to wait for our appointment... Stupid Apple stores - 10 guys standing around doing nothing but we have to wait 2 hours before they will go in the back and get a new phone off the shelf. Dumb. It's done now. And when we got back we had a little package for the kids from our sweet friends the Montoyas. Thank you guys xoxo
Big appointment day tomorrow. Hoping everything looks good and M can come off some of the meds - 2 diuretics, potassium chloride, Enalipril, aspirin, vit D and add in his Tylenol for pain and Benadryl for agitation that's 8 meds we have to get him to swallow at least 2x/day. Gross. Could be worse I know I just hate doing it to him. He always looks at me like I have betrayed him.
He enjoys his bath time and the house found him a little tub to use - he's such a rockstar he can make a pink tub look cool ;)

Waiting to go home

We are at the Ronald McDonald house. Resting, catching up on all our lost sleep. Macsen is bathed, Jammied and out like a light in his swing. We need to wake him to give him his 5 meds due at 8 :( I dread it. He cries and gags and he's so peaceful now. He is still coughing and it still sounds very wet. It hurts him and he cries. He also is over meeting people. Like always, people here at the house remark on his cool hair and they try to talk to him. He watches them warily then cries if they get too close.
I am ready to go home. To get him comfortable and at ease again. To see the girls - missing them terribly tonight. They love it here at the RMH. They are having fun at the Cinderella Ball with their Nana. Just a few more days

Day 8... Discharge!

While I attempted - and failed - to get out if bed at the RMH and head over to the hospital, two things happened. 1) It snowed. B) They had rounds and declared Macsen fit to be released back into the wild.
When we actually go is anyone's guess. Our roommate is also going. They had the same surgery on the same day with the same surgeon, right after M. She is a cutie who is one month younger and also has a a head full of hair. I was cruising the halls with Macsen and the other mom was walking with her girl and we came across the hospital chaplain. The words destined and marriage were spoken. I was quick to add that my son might want to "play the field" a bit first -- the chaplain had some funny things to say about that! We all laughed though.
Ok, so as I am writing, they are handing me paperwork that says Get Out. Woohoo! Spending the weekend at RMH, then another follow up appt Monday. So Close!

Day 7 Post op

Macsen is getting better/ stronger everyday. He is able to eat a little better. Still about half what he normally eats which was never a lot to begin with. He is off iv fluids though so I worry he is getting enough in. They won't keep us in patient based on his weight gain/loss though which is a relief. They trust me to get help with that at home if we need it.

He had 4 attempts today to draw his blood :( none worked. His little veins are not happy. So they'll give him a break and try again tomorrow. Yay :(
Good news? We finally got a room at the Ronald McDonald house. So great because while I can't leave M, Aaron can at least get some rest in a real bed for the first time in over a week. He always gives me the sleep chair and tries to sleep in the rocking chair. When his legs go to sleep and the hospital is quiet he goes roaming for a quiet spot to crash - a bench, or recliner. So yay! He went over already to do the paperwork and also grab some dinner. He'll be back on the next shuttle with some dinner for me. Love that man.
Also, I got the results back from the creamatocrit - a process that tests the amount of calories in your breastmilk. It is used to see how many calories they need to add to bring your milk up to 27 calories.
Well my milk averages 30 calories - with some testing 34 calories :) I am happy. Macsen has been getting very high calorie milk so it's not the reason he is growing so slowly. Phew. I am hoping once he recuperates from this last surgery he can start gaining again.

Day 6 midday update

So little man has been weaned off the oxygen and is doing ok. His X-ray from 4 am - yes, 4 am EVERYDAY- looked a little wetter so they added another dose of his diuretic lasix. They have been trying to put him on oxy codone for pain - citing his irritability for increased pain management. But they don't know our little man - he's pissy because he doesn't like them, is not impressed with their hospitality, and he wants to go home. He settles down when they go away and leave him alone. We have also been trying to get him out of the room more - we had to hook him up to an oxygen tank and a portable heart monitor but he loved it. It also tired him out so he can sleep a little deeper.
We requested Genetics to find out exactly what his tests said and found out in the process that although they did test for CHARGE and he was negative they never actually tested for NOONANS. Ugh. So they are putting it through and hopefully we won't have to wait the 10 weeks for these results. The director of the CHOP Genetics program doesn't think he has it but he does have that fat behind his neck. So, where we thought everything was done it wasn't. Crazy. These people screw things up like everyone else does. So now we wait to see if he has any syndromes associated with his heart defect. Sigh. Thought we were past this.
He is eating pretty well and is currently snoozing in my arms.

Day 6 P O

4 am and Macsen had his daily X-ray...
Always 4 am and they always show up just After he has fallen asleep.
At 3 I woke up b/c M was crying. The nurse and Aaron were trying to get him to eat - he has really stopped wanting to eat much. He refused so they put in his paci's- he kept fussing so I got up. He's in his swing, eyes closed, mouth firmly shut. I sit on the floor in front of the swing, take the bottle, put it to his lips and he takes it hungrily - never opening his eyes but he KNEW it was me. Crazy baby

Day5 Post Op

Macsen smiled at us today! Incredibly happy. I am getting my baby back.
He ate pretty well overnight and the swing my sister bought was a serious Godsend...or Gabsend!! He was so agitated after the move from the room in CICU - he is such a funny baby, very uncomfortable with changes in his surroundings at bedtime and changes to his schedule. So when he saw the swing set up and we put him in it he passed out. Our nurse was afraid after his meltdown during the room change that he would have a tough night w/ inconsolable crying but Macsen really wasn't too bad. It was impossible for me to sleep though - the recliner wouldn't stay reclined, we had 2 baby's on different eating/crying/fussy/med times so Gabriella's mom and I were both up all night. Aaron slept on a recliner in the lounge.
He had his iv fluids cut off and his meds are now all oral. He still has the cannula in giving him an oxygen boost and all the EKG wires - such a pain come diaper change time. He looks exhausted, his eyes look tired to me. He needs to get back to some solid sleep which is nearly impossible in a hospital. So noisy, bustling, focused on pushing meds and ordering tests but not rest.
Have a hard ass(apologies) nurse today - she's training someone so is probably even more picky then normal - harassing us about how many pieces if furniture is in the room, fussing at Aaron for getting Macsen his milk instead of waiting for them to - breast milk is considered a medicine here apparently- giving me grief about wanting to change his pulse ox probe even though I feel his isn't picking up well... Ugh. I am too tired and my sense of humour is wearing thin - bits of "complaining Alex" showing through the worn spots. The iv infiltration has shaken my belief that everyone here is paying attention...
There are some amazing nurses though - we love most of them and have had several of the ones we loved from last surgery which is nice. They went above and beyond yesterday trying to find us some of M's 7th generation diapers. He ran out and the Huggies the hospital had irritated his legs where they touch him and he now has a scab there:( they didn't find his diapers but did find some pure and natural ones that haven't bothered him yet.
Aaron is doing laundry. There are machine's in the 8th floor.
I hope we get a good nurse tonight.

Stepdown! Getting close now!

Hemi-Fontan Post-Op Day 4 Evening

So... the morning didn't start off too well, but the good news is the "infiltrated" line in his left arm was IV fluids and looks to be well on the way back to normal.

We have been transferred to the Cardiac Care Unit (CCU) and out of the CICU. STEPDOWN! For those who counted, we spent 5 days in the CICU for the Norwood and then 5 more in the CCU. This time was 4, and now...? Aiming for just 4 more but of course it's completely in God's hands. We know we have been extremely blessed to be going through this so (relatively) quickly. Prayers are working!

As the day wears on Mr. M has been feeding more, fussing less, and de-swelling in the arm area.

Here is a pic with the wonderful Dr. Chitra Ravishankar. Her and Dr. Desiree Fleck check on us every day. =D

Might Mac is sleeping now and his heartbeat is 113, with Ox at 85%.
THAT is his normal!

Day4- 4am

Ugh...! Just ugh! :(
Little man is finally asleep. He's been fitful tonight - tough to get to sleep, not sleeping long. Around 2:30 am he cried out - went to him and he was eating his nasal cannula. No nurse in site even though his sats had dropped and he was agitated. Got his bottle and he slowly ate 1 ounce. The whole time he had his left leg pulled up to his belly... Just the left and he wasn't kicking it, just holding it tucked up. (He did the same thing last surgery when he had the PICC line in his right leg - it hurt him and he kept that leg bent and close to his body.) I knew something was hurting him on that side. Asked the nurse for more milk - they keep my breastmilk under lock and key- and a diff type of bottle to see if he could eat easier out of a DrBrowns. She brought everything in and I asked her to look at him - showed her his tucked leg. We checked his leg, foot, tummy... Nothing. Chalked it up to maybe that central chest tube hurting him. She left. He couldn't sleep. His pulse has been up for about 12 hours - in the 140s- 150s when they had been in the low 120s. No one was concerned as it falls in the normal range, but we knew this wasn't normal for him.
I heated his milk... 3:30 am. He's still awake and still tucking that leg up.
4 am getting agitated so I reposition him...rolling him on his right... Mindful of his RA wire, his chest tube, pulse ox, oxygen cannula, placed his left arm on his side - it was still wrapped and boarded from surgery - an arterial line and a PIV line with his fluids. His upper arm sticking out above the board was rock hard and twice normal size. I rushed for the nurse and she got the doc. His iv had gone bad and had been pumping all the fluid into the tissue of his arm, not his vein. It's a grade 4 - whatever that means to the docs. To me it means his hand and arm were purple and so swollen they felt made of stone. Cold stone and it had a bright white area like a big blister where the iv went in. It looked excruciating. We are having someone from ortho and plastics to look at it - see if there will be lasting damage.
They took out the iv but had to leave his arterial line in until after his chest tube and RA wire come out. I just want everything off that hand now! That was the hand he would chew on... And twirl his hair... And grab his ear in his sleep.
I feel awful the signs were there and I missed them... Please don't let him have lasting damage from this:(
I hate this. so mad at myself... And mad at the nurses... And myself again.

Day 3 post OP pm update

Macsen had 3 echos today and 1 X-ray. Sweet baby was so good during all of them. He totally slept through the last echo but kept hitting the doctor's arm in his sleep.
We have been waiting all day to hear how his heart looks. They just rounded and said there is good flow through both pulmonary arteries! Yay! A little narrowing of his LPA and his squeeze isn't optimal but overall looks good!wish they could have told us earlier and saved me the 40 new grey hairs that have grown in over the past 12 uncertain hours. He is also off the high flow oxygen which is great - that thing is intense blowing up your nose. They suctioned a lot of gunk out of his upper airway today too. He would really start to choke and panic - his arms and legs flailing, eyes wide. Scary.
His lung sounds better and better. The nurses do PT - beat on his chest- every 2 to 3 hours to help it and he loves it. He relaxes and goes to sleep - all while they have him hunched forward - his newly sewn chest padded with a blanket and resting on their hand while their other hand pats his back and chest. Doesn't look comfy but it must feel good to him.
After talking to the rounding docs one mentioned... And I am not going to hold my breath...MAYBE going to step down tomorrow. What? So hopefully that means all his extra appendages will be taken out in the am. So ready for my baby to be able to wear clothes. He hates being naked. Thank goodness for his Aden and Anais bamboo blankets. He loves them - he strokes them in his sleep. That and twirls his hair... I was happy to see him start doing that today too... Getting my baby back little by little. I swear he almost smiled. Sigh. Relief. Happy. Hoping nothing wacky happens overnight and we all get a good rest.
Tomorrow we have to work on eating. He won't eat much - today I was able to get 15 ml in with a syringe. He swallowed it .1ml at a time - he just seems unable to navigate the bottle anymore... He goes for it but gives up after 2 or 3 sucks. Hoping he's just exhausted and perks up tomorrow ready to eat.

Day3 post op

Finally got to hold my bub. He was moaning and agitated- nothing like 2 days ago - and he still has all his lines and rubes but they carefully bundled him and put him in my arms. His eyes got heavy and he went to sleep in less than a minute - he just wanted to be held.
His left lung is most probably collapsed. The X-ray this morning looked totally white on that side:( Because he is so hard to get an iv in they are leaving his central lines in just in case they need them in a hurry. He does look better but not perfect DrBrunetti said hopefully tomorrow all his lines/tubes can come out.
They are diuresing him - giving him 2 types of meds to make him pee- and suctioning lots of crud from his throat. It will even choke him sometimes and he panics because he can't breathe.
His bandage came off his chest incision and it looks really good - should heal nicely.
He is still on high flow oxygen - working with just 1 lung is tough. Once they get that straightened out he may be able to come off it. Good because the sticky dots makes his face break out. His face is a mess - all the rubbing he did in reaction to the morphine and other pain meds really messed his face up. His face swelled so much and then the rubbing... Looks like he was burned all most. They won't let me put anything on it because greasy lotions will make it impossible to use tape to hold his cannula in. I did put a little breastmilk on it - crazy I know - but the crazier thing is it already looks 50% better an hour later.
He also ate a little - an ounce - but I was happy. His mouth is so parched his lips are cracking and he kept pursing them... They must hurt.

Day 3 post op am

Last night was much better than the night before. Macsen is now just on Tylenol and they have turned off Milrinone and put him on oral Enalipril. He has a lot of secretions they are having to suction and his left lung still looks bad but chest pt should help. Chest X-ray and echo today showed no fluid on his lung so they won't have to put another chest tube in. Still waiting for rounds - it's the weekend and they take longer- to find out the plan for the day. Hopefully it involves removing some tubes and wires so I can hold my baby today.
He looks better - not as swollen. You can actually see the whites of his eyes!