This crazy year is almost over!

Sitting here on my bed - Macsen beside me sleeping in his NapNanny. He's laughing again - playing with the angels my mom says. We know so many angels now - Rowen, Riley, Anya to name a few. We think about them all the time - these tiny little heart warriors we rooted for, prayed for, loved and cried for. Maybe they come play with Macsen in his dreams - make him laugh out loud (which he has yet to do while awake but lets loose with big chortles while asleep.) and they whisper to me to love him extra everyday - for them, for their parents who had to say goodbye to their tiny little loves before they grew out of their baby wrinkles and folds.
We had a sort of rough day yesterday - we had a few blood streaked diapers. Thanks to my fancy iPhone I was able to snap a pic and send it to his nurse in Philly. She wasn't super worried as M wasn't extra fussy and his oxygen levels/pulse rate looked good. Just have to keep an eye on him - as if we weren't doing that already.
He had his last echo of the year this week too. Everything looks good - his shunt, arch and arteries are all looking good. In fact, we were able to lower his lasix (diuretic) dose down to 1x/ day! He's hovering around 10.5 lbs but is still steadily, if slowly, growing. He's been happier too - some of that was from getting his reflux meds under control and some of it is getting his natural schedule figured out. Baby wants to be bathed and in bed no later than 6:30. Do that and he's asleep in minutes without tears - wait 20 minutes too long and he's an inconsolable mess. He also wants to sleep until at least 9 am. He wakes up almost every hour still to eat but doesn't really open his eyes until 9 or 10 am.
He slept through Christmas morning!
I was very grateful to be in our own house for Christmas - we just didn't know 3 months ago where we would be. We had a lovely day with my mom, Aarons brother Sam and the kids - and my sister and her family drove down too. The girls were so happy playing with their older cousins and cried today when they had to leave. It was a little bit of normal in our isolated life.
Only 2 more months of living like this and hopefully little man will rock his second surgery, the girls can start living a more normal life and we can relax a little again.
Next week M's local doctors are both closed for a whole week so no appts - no appts for a whole week!!! That's a first for M. Kind of nervous! We'll still touch base with his home monitoring team everyday though.
I will be happy when this crazy year is over. It's funny because last year we had a really great year and in January of this year - before we even knew we were pregnant my sometimes clairvoyant husband turned to me and said this will be our worst year - our hardest year. Yep. It was, so far and hopefully by far, our toughest year in the 13 yrs we have been together. Praying 2013 is a little easier on us.

Macsen's birth announcement

We tried to mail these out to everyone who helped us get our family to Philadelphia. To everyone that helped Macsen survive his diagnoses. He's not just surviving - he's THRIVING and we owe it all to you guys - you who prayed for us everyday, who sent money, suggestions, offered your homes and your help. We're not out of the woods yet with M's next surgery scheduled and quickly approaching. So keep the prayers coming - we feel them. Every time we look at Macsen and see just him - our shyly smiling, fist slurping, fuzzy headed 3 month old - not his diagnoses, his odds, his past and future procedures.... just him in all his wonderfulness  I know the prayers have helped us get there. We believe he will be here in the morning - we believe we will get time to love him. So thank you. I'll never be able to say it enough.

Save the Date

OK, it's official... Macsen's second surgery will be the last day of February. We'll probably head back to Philly on Monday the 25th, so they can do the pre-admission testing on the 26th and Cath on the 27th.
Additionally, Super M hit the 10 pound mark this past weekend and he's steadily climbing. Still only on breastmilk and now Alex is hard-pressed -- literally -- to keep up with little man's feeding schedule. I guess it takes a lot of calories to grow that much shiny hair!
Thank you all for your continued prayers and support -- it's definitely helping.
- Aaron

More good news

Our little fluffy monkey is 11 weeks old today!

Good news today - great news actually. But first a little context. When Macsen was born I barely got to see him. I held him for a brief instant on my chest still warm from my body and then they passed him through the window. Aaron watched them checking him over, inserting his umbilical lines and when I asked him "What do you see? how does he look? Is he ok?" He said "He's really chubby. He has a really fat neck." Macsen was 2 lbs lighter than his sisters so chubby wasn't what I was expecting to hear. And when I saw him again on his way to the Cardiac Intensive Care Unit down the hall he did have a lot of fat behind his neck. It was odd looking but I was quickly over it as he was looking me in the eye making sure he had made the right choice in choosing us as parents. I didn't want to let him down.
Later when we were gathered around his isolette oohing and ahhing over his perfectness a geneticist - CHOP's Director of Clinical Genetics Dr Zackai came in and started doing an exam - she was examining him for a syndrome that could explain the fat behind his neck. A genetic syndrome called Noonans and Charge. She found a few markers - the fat, the spacing between his nipples, his hairline in the back but not much more than that. Still, she felt the need to order genetic material be taken during his upcoming open heart.
I was devastated. We had an amnio and a microarray while pregnant which ruled out about 1500 genetic abnormalities. I got these tests not because they would have made me abort Macsen but because I didn't want any more surprises. I was prepared for his heart and to have this sprung on us felt overwhelming in the hours after childbirth. I was a little depressed that night but I rallied and we moved on.
It's been 10 weeks today since his surgery and in the interim I have been doing research on Noonans. I joined a Noonans group on FB and started meeting other families that had children with it sure that no news was bad news and wanting to be prepared for the phone call saying "Yes, your son has Noonans." I didn't want to break down - didn't want to let him down. I wanted to say "Ok. I have looked into this. I am prepared. Now what's the next step." So today we get the phone call and no Noonans. Or CHARGE. Or any other known syndrome. Phew.  It means his heart defect is most likely just a spontaneous mutation and not something he would pass down to any future children. That's amazingly good news too.
I am feeling blessed. Again. And I am feeling.... a little more informed... that's not the word. A little more educated maybe in that I now know something about this percentage of the population 1 in 1500-2000 or an estimated 200,000+ people in the US that are living with Noonans. There is so much I never knew after having 2 perfectly healthy kids - I never knew that congenital heart defects kill more children than all the childhood cancers combined, or that 1 in 100 babies is born with a heart defect. Isn't that crazy. Those are big numbers and I never knew to worry. Maybe that's a good thing - not to worry your whole pregnancy about what can go wrong - but it's also good to be aware.
So we are moving forward. Still no date for his next open heart surgery but the doctor told me today she should have a date for us in the next 2 weeks. Great. Merry Christmas to us. It will be good to know. good to start planning and getting ready. Ready to have it behind us and looking forward to a few happy years with no surgeries before his 3rd one.

Our new "normal"

Macsen is already 10 weeks old! And he is 9lbs12oz today. At his pediatrician appt yesterday his doctor said he was gaining weight like a "normal" baby. I know he's not normal but he seems so most days. That's a good thing. Good that the meds, the tracking and perpetual appts don't make us look at him any differently than we look at our girls. But when the home monitoring nurse tells me she has to change the time of our biweekly FaceTime appt because his CHOP cardiologist wants to talk to me. That's not normal so I know we are going to get some news. Maybe our next surgery date. I thought I was ready for it - it will help him and all the other heart families I talk to say life is so much easier after this interstage period is over. Macsen will be less tired and his heart won't have to work so hard after some of the blood it has to pump is diverted. He won't be as fragile so we can start venturing out more. The girls can go to school. BUT first we have to go through surgery again. Have to hand him off and watch him being wheeled away again to a place I can't help or comfort him. And when they bring him back only time will tell how he will do with the sedation, the heavy narcotic pain medications, the rewiring of his circulation, the fluid... I am afraid. Everyday I love him more and more and to see him hurting is unbearable. I know with his first surgery I found courage I never knew I had and I hope with prayers for strength I find that again. Right now though I am happy living in our little bubble trying not to think of the future and loving my smiley sweet little man.