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.

8 week checkup

Today we had M's weekly doctor appointment. He's gained 4 oz from last week putting him at 8 lb 14 oz. He has grown a tad longer - 21 inches now. So he's basically the size our girls were when we brought them home from the hospital. And I couldn't be prouder of him! We had to put him on another reflux med - Prilosec this time and it really seems to be working so far. He's not crying as much after he eats and after he spits up or burps.
He decided this past week that he no longer wants to nurse which makes me sad. We will keep trying but I won't push it until after his next surgery. We struggle so hard now to keep track of every ml of milk, every gram of weight gain or loss and nursing (though it was the easiest thing in the world with the girls)
I realized he is eating a lot- 650 ml or 20+ ounces/24 hr is a lot for an 8 weeker. He just burns through the calories because of his heart. He still eats every 90-120 minutes - even at night but I'm afraid to make him go longer. If he eats too much at once he throws up.
So much of our life revolves around feeding Macsen, burping Macsen, changing Macsen, pumping for Macsen then starting all over. My mom AKA Nonna drove down from Canada to try to help me keep up with everything else. It has been so great having her here to take the girls for walks, read to them, wash clothes and help me organize. One of the best things is she just sits with Macsen and gets him to eat eat eat! I told M's nurse in Philadelphia they need to send every interstage baby home with a pulse ox, a scale and a grandmother . . I won't want her to leave when she needs to go back home.
Also today Macsen rolled from his back to his side! At the doc's office. Aaron caught it all on video! It was so great.

Recovering.... Phew

We got our first cold last week... ALL of us. It really stunk b/c we didn't go anywhere except his doctor appts which is where one of the girls picked up a bug. Just a cold - sneezing, sniffling, and lots of snot. We hand washed constantly and used hand sanitizer everytime we touched M but he still got sick :( I was terrified. Stupid little viruses send interstage babies to the hospital. Their lungs just can't take any drama. Even though this was a tiny bug Macsen was still having retractions when he was breathing. I took a quick vid with my phone and within minutes his nurse practitioner and cardiologist in PA were looking at it. They told me to keep an eye on it and if it got worse bring him in to the ER. It scared me because here we are coming from one of the best hospitals in the world... And we are very far away from that awesome hospital.
This week was extra sad because one of the moms I came to know while we were both pregnant for our heart babies lost her little one last week. They were home, doing well then suddenly Anya became unresponsive at home. Less than 24 hrs later she was gone. I cried my eyes out when I read her Mom's account of the day... How she never thought this was it... That they would look back on this day a year from now and say "this was just another crisis we weathered together and overcame." Anya was 1 month older than Macsen. My heart is broken for Karen and sister Emoree.
What makes this so hard is how fast the bad stuff can happen. Looking at Macsen I really don't see him as having anything wrong.. He looks so sweet and perfect ... But inside he has this shunt that looks like a tiny straw - it can clot- he has a patch around his attached aorta and pulmonary artery - it can get scar tissue and become obstructed. I keep telling myself to trust everything will be ok. It won't help anything to worry - it will just make me crazy. That being said I do want an in-case-of-emergency plan. I need to know we can get him to the help he will need in time. We see his cardiologist on Monday and will talk about it with her.
We did go to the park today and joined some friends for a picnic. It was the dose of normal I needed to get my head in a better place. Macsen stayed in his baby wrap and slept the whole time. The girls had so much fun playing and completing a scavenger hunt my friends put together. Hooray for normal! Just what we needed.
Macsen was 8lbs5oz today. A slow gain but he's still gaining. We had to double his reflux meds because he was in a lot of pain. He's doing better but he still spits up quite a bit.
He's all curled up in the crook of my arm - just let out a sweet baby sigh. Time for bed.

Practicing His Vowels

Here is Super M right after a bath. The girls were so excited to tell me -- "See?? Macsen DOES know how to speak! He says Oh, oh... WE taught him that!"

Last week Macsen got the sniffles, and has had a lot of drainage. We debated going to the ER to have him checked over, but his Pulse-Ox readings have looked good and he's been eating steadily and continues to gain weight so.....
Don't fix what ain't broke, right? Biggest downside is not being free to bring him everywhere and SHOW HIM OFF!

What they did to Macsen's Heart

Happy Halloween

  Macsen's first Halloween! No trick or treating for our little SuperMac. He and I stayed home while his Dad and sisters went on a neighborhood hayride. they had a blast and we got to edit some fun Halloween pics. The girls got a huge haul and our oldest actually lost her first tooth. A very big day :)

You're not going to believe this :)

On our journey to CHOP in August, 2 hours into our trip @ our first stop at a rest area in Columbus Georgia our cat Miette escaped. We searched for hours and left with me and my oldest in tears. The 3 year old didn't get what all the angst was about and stated "She's just a cat." Ever practical.

Over the coming weeks Rita, the Welcome Center manager, kept up the search and thought she might have found Miette once - texted us a picture and it was so simialr we almost sent someone to go get her. but she was missing the white nose stripe Miette has.

Cut to 10 weeks later - we have been home for a week and  the girls are walking around sadly saying "I miss Mimi" when they see her favorite sleeping spots empty. We even talked about MAYBE getting another cat at Christmas when BAM! Text from Rita "I think I found your cat!!!" and 3 photos of...........................

MIMI!!!! Aaron and the girls left right away and drove the 4 hour round-trip to bring her home that day. She's skinny and a little beat up - who knows what she was living off all that time- but we are thrilled to have her back. Rita said they saw her wandering around for a few weeks and were able to lure her with food. What an amazing thing! What amazing people to keep looking all this time.We feel so blessed - again. Thank you Rita, Pam and all the employees of the Georgia Welcome Center in Columbus. We can never express how deeply thankful we are for this incredible kindness you have done for our family. She may be "just a cat" but we think she's a miracle too.  

Breaking the 8 lb barrier

 

   We have been creeping up on this number for a month! Every morning I weigh M on the hospital provided scale. It is part of a home monitoring program @ CHOP for interstage babies. We send his oxygen saturations,  his pulse, his daily intake, and the dreaded weight. I tie so many emotions up in his weight - mostly fear that despite my best efforts - pumping around the clock and only giving him the calorie and fat rich hind milk almost every hour- he will lose weight and we'll have to supplement his milk with formula or feed him continuously via a tube down his throat or in his stomach. I also feel frustration, and a deep sadness that this innocuous number - this thing that happened in my girls at an easy and embarrassingly high rate (they were technically obese Michelin like babies - is such an important thing for Macsen and reveals how well he's doing - or not doing with his unique heart.  

But today I felt JOY!!! And happiness and ecstatic-ness and such relief - he's 8 lbs!!!! It's taken us a month to gain the weight he gained before surgery and lost in the days following and now we have exceeded it! I've never been so ready for one of my babies to outgrow their clothes - so ready to get rid of all the newborn clothes. 

One month ago this was our life

One Month Old - Already?

Really? already 1 month old? Yep! He gained a little weight over the past few days and are now ALMOST 8 lbs! crazy to think my girls were NEVER 8 lbs - always bigger. Macsen is growing - if more slowly. The doctors told us they grow slowly at first but after they have recovered more fully from the operation and their new circulation their growth usually accelerates.
We've also been struggling with GERD or reflux or really bad gas pains. It's so hard to know what is normal baby stuff and what is heart baby stuff. I know lots of kids have reflux - the girls didn't - but I think Macsen, like so many heart babies - does. He's on Zantac - has been since his surgery - sort of a blanket "All heart babies need this" but lately, the past 2 weeks or so he has really had bouts of screaming, arching his back and  spitting up. No vomiting per se- just lots of vomity burps. Going with the reflux theory we've been only lying him down on an incline - never flat and we never feed him lying down. Had to say good-bye to my favorite lying down nursing position. Speaking of nursing I've cut that out too in accordance with theory # 2 - that I have a foremilk/hindmilk imbalance (http://www.llli.org/faq/foremilk.html.)  My body went into milk production overdrive after he was born and I made way too much milk. I have been mostly dumping the thin first milk- foremilk- and giving him only the fatty hindmilk as per the nutritionist @ CHOP's suggestion. I recently read that foremilk is high in protein and vitamins so added some back in with my pumped hindmilk only to have Macsen really suffer. Painful gas and green poops. More research revealed foremilk is also a lot higher in lactase that - if out of balance- can overload the baby's colon causing the previously mentioned symptoms - in addition to more spit ups and colicky symptoms. Hmmmm. sometimes I wasn't super diligent about only giving him hind milk - especially those 3 in the morning pumping sessions. And when he nurses he's only getting foremilk unless I pump first then nurse because he  tires after 5 minutes - not enough time to get to the good stuff on his own.
We see his pediatrician for the first time tomorrow - I'll talk to her about it. I hate to just throw more meds at the problem if in fact there's something going on with my milk.
He's happily passed out at the moment - propped up in my left arm. Sweet baby - happy 1 month birthday!

We're Home!!

After a few days on the road we made it home 2 days ago. The first thing I did was take Macsen and go sit in his nursery. We rocked in the comfy nursery chair I've been pining for all those days in the hospital. The girls ransacked all their toys they haven't seen for 2 months and poor Aaron spent 2 hours emptying the van. Our house now looks like every closet and bin threw up. Sigh. We're happy.

Homeward Bound

Yesterday, walking down the stairs in CHOP's Atrium carrying my 3 week old son in my arms - descending from the upper levels that house the Special Delivery Unit and the Cardiac ICU among other highly specialized centers for various serious childhood diseases - I felt such a weight lift off my heart. Even though we had been discharged almost a week before, this descent with Macsen was so significant for me. Never in a million years did I think we would be leaving the hospital and Philadelphia at this point in our journey - and with our beautiful son. I wish I could visit my terrified self who after stepping in the elevator desperately focused on the posters; on the laces in the little kids shoes next to me; on the increasingly painful pressure of my fingernails digging into my palms so I wouldn't openly sob in front of all those strangers. I wish I could tell myself to take a deep breath and believe that we would be ok - that I would get this moment - this buoyant descent from terrifying to so close to normal I forget my baby still has half a heart. Sure we'll be back in a few months for round 2 but Macsen will hopefully be bigger and stronger and even more of a rockstar.
Until then our job is to keep him well. He can't get sick or he will have to be hospitalized. We are so excited to see our friends back home but have been strongly advised to keep Macsen in temporary isolation - at least until his 2 nd surgery. It's not forever. We have also been told that anyone that comes in contact with him needs to be current on their vaccines. All you guys who know me know I hate vaccines - I got the DTaP shortly after he was born and did agree to the HepB for him because he has gotten blood products and will most likely get more in the future. Sucks though. I hate them. So be forewarned and please don't take it personally if we avoid get togethers, parties, and large groups. And I probably won't let you hold him, might inspect your hands before you can touch him, and you may get punched if you try to kiss him. As much as he looks like a regular baby and as badly as I want him to be, he isn't.
Ack! Enough of that!
Excited to be headed home! Excited that we only have 839 miles left :) and we are all together.

Packing up

Ok people. We are packing up!!! We have been here almost 2 months. How, you say, do you fit all the crap you needed to keep your 2 precocious girls entertained, and clothed for 2 different seasons and you with a 25 lb weight loss - picture tons of stuffed animals, school supplies, books, workout/swimming gear, and all the trappings of a brand new baby- how do you fit that in your car? You don't - you ship your crap back to yourself :) Sad but true. It was that or rent a trailer. Tomorrow is our last appt up here until we have to return for the Glenn. Macsen will let us know when that will be - could be anywhere from a month or two away or 6 months. We are leaving this place like we came - together as a family, hopeful for a long happy future with our little man Macsen. After meeting some really great families of other heart warriors we are so aware of how blessed we have been so far on this journey. We'll be coming home with no feeding tube, no oxygen tank, and our beautiful 3 week old single ventricle baby. Please pray for an uneventful road trip and a quiet/healthy couple of months.

Stay the Course

Day 19 of life and we're progressing slow and steady. Not much news to report, just checking in. As you can see, we've already hit up Target for some Halloween digs.

First day "on the outside." We went shopping because Mr M needed some new duds. He's still under 8 lbs so al those 0-3 month outfits are huge. We hit up target and Nana spoiled him with his first shopping trip :) That was all the adventure we could take so we came back to the Ronald McDonald house to do laundry and say good bye to Nana. With M's discharge we now have 6 people in our room and that is 1 too many according to the rules. She was such a big help - we really appreciate the time she was with us helping with the girls. They have done so well with all this and I know being able to be together everyday - even if only for a few hours - has made all of this more bearable.
On the agenda for tomorrow? Our first outpatient appointment with our pediatric cardiologist. We also need to meet with lactation about donsting all my milk I pumped. It's a crazy amount and I would never be able to get it home. And we need to figure out how M is getting home. Driving down w/ Aaron and the girls or flying with just mommy and an emergency tank of O2.

Best photo ever

We have been discharged! On our way to the Ronald McDonald house to be together as a family. Sigh. So very happy. Terrified. And happy

It's officially discharge day!

It was confirmed at morning round that Macsen Gray Miller us in indeed a rock star of epic amazingness and will be discharged today - a scant 9 days after Open heart surgery!!!

Happy Saturday

Great night and morning for us today. Macsen is eating every 1.5-3 hours. He got a bath today and loved it! He's looking fluffy. He gained weight yesterday - yahoo! And the best news yet? I think we get to blow this Popsicle stand TOmorrow! What? Crazy! We will stay in Philly for another week just to make sure he's ready - and we're ready to take him home.

One day closer...

Macsen is feeling better today. Plenty alert this morning and no more PTSD-like panicking over every little worry. Taking a nap now while Alex multi-tasks... Facestalking AND bottle warming!

Feeding

Working in feeding today. That is one of main milestones -weight gain- before we can be discharged. Of course today Macsen decides he doesn't really want to eat :( 5 minutes here and there isn't going to cut it. With his IV off the pressure is on to make sure he's taking in enough. Pray for a hungry night!

First night in our big boy room

Looks peaceful right? It's not... What you can't see is a sad little baby on the other side of the room that has been crying for the past few hours. Please pray for Xander so he can get some rest tonight and so can we.
Macsen has no more IVs - just his heart and breathing monitors. He'll only be on oral meds- lasix, aspirin, and Zantac. He's nursing every 2 hours like a champ. We are so very happy!

Big sister kisses

We've been moved to the step down room!!

STEPDOWN!

Major milestone today -- moved from the Cardiac ICU into the CCU just down the hall. One step closer to going home! One little problem though -- where to put the 3 large bins of frozen breast milk! (Not to mention the multiple smaller bins in the fridge!)

What a Grayt morning!

Macsen nursed today!!!! Hence the milk coma:) He was also taken off heparin - his last iv med - and put on aspirin. The team told us we are 3 rd on the list to move to a step down room!!!! Hallelujah. Semi private and a sleep couch for me. Ahhhhhh. So nice. Can't wait. Such a Grayt morning.

Better day

Just got his other umbilical line out. He bled quite a bit:( Heparin didn't help. He has downed a few bottles today. Yay! And is currently sleeping in his dad's arms. We are running on fumes and will eventually need a good night's sleep... It's tough to leave your newborn for an entire night - especially when he has just had major surgery. And sometimes the night nurses just don't seem as dedicated. Aaron gets furious when at 2 am and we check on M and the night nurse is playing dance music in the pod and every light is on. Bad for your circadian rhythms. We love most of the nurses here. Today I watched Steven our nurse for the day sift through the blankets to find the softest one for Macsen's bedding. So sweet. ........
Had a nice dinner at the Ronald McDonald house. Love that place!! It has made this time in our lives a little bit easier to navigate. Dinners every night put on by various groups of amazing people. Crafts and shuttle rides to the hospital. So great! I put the girls to bed and fell asleep with them. I feel so much better - snuggling with my girls and getting an hour of good sleep...ahhhhhhh. Got back to the hospital in time for rounds. Macsen had a great day and is now down to just his PICC line with his heparin and they are going to switch him over to oral aspirin and oral Zantac tomorrow. These babies have a lot of reflux. Ii can sense the light at the end of the tunnel and I know our journey has been so great - compared to what we were preparing ourselves for - because of this wonderful hospital, support team, and all the prayers.
On that note I would like to ask that you all pray for our new friends the Gormans. Their little man just had the 3rd surgery and is struggling. Please pray for strength for Little Caelen and his parents Katye and Martin. They have been truly tested on their journey and are an amazing family.

Pep talk time

Last night while changing M's diaper I noticed a little blood in his stool!!! He was struggling with a lot of gas and seemed to be in a lot of pain - like gas pain... Stabbing pain that passed. And he gagged a lot but seemed to be struggling with some congestion. Sigh. So we are NPO... Again... No food by mouth until the docs come by today with their theory.... At this point I feel we'll never get out of this place. I'm so ready... 11 days is not bad ... I know plenty of babies that are inpatient for months. I need to stop dwelling on what is going wrong and focus on what is going right. Macsen is breathing on his own. He doesn't need any more morphine for his pain. He knows how to eat. He's warm and snuggly and I get to hold him all day. All really good things - All Grayt things.

... Two Steps Forward...

Phew! Glad yesterday is over and we are moving on! They cut his diuretics as he was negative - very negative- he looked like a shrunken version of himself. I wouldn't have recognized him - couldn't have picked him out of a baby line-up.
But today we got to feed him - he sucked down an ounce on 5 minutes and promptly started getting rid of his big gas bubble. They had to put him back on milrinone to help his extremities warm up. And they cut his high flow oxygen down to regular. So great b/c everytime he would open his mouth it high flow o2 would come shooting out. He's still on heparin but may go to aspirin layer today.
We get to hold him all day and work on eating. The girls are coming back from their weekend surge Auntie Gabi. They had a blast and it was such a relief to know that they weren't wondering where mom and dad were. We've barely left the hospital. I hope today we can give him a "bath" with the girls and they can pick out a clean smock and help me dress him. I think they'd like that

Feeling like we are taking a step back

Fluid on M's lungs and some effusions caused his docs to keep upping his diuretics. He's now peed every drop of moisture out if his body and looks so shrunken:( I barely recognize him. We had to stop oral feeds because he went on high flow oxygen. He's do hungry.
And his cry ... So feeble and strangled. I know overall he's doing great - he just doesn't look it. But at least I get to hold him now. Maybe today will be better.

Post-Op day 2

He's alert now, morphine for the pain from yesterday is wearing off, eating like a... well mini-me, and generally ROCKIN this post-op. Even got Rock Star hair to match his 'tude. Good thing he prepped for this with months of Baby Combat!

Feeling very blessed today

Macsen is doing amazingly well today. 12 hours post op he no longer has a breathing tube, chest tube and drank 1/2 an ounce by bottle. Wow!!!! All the staff says he should be the poster child for HLHs. So axing when you think how dispirited we were in May after the 1 st trip to CHOP. Now look at us!!! We are ecstatic! Just the way everything has happened - his amazing birth, the lack of space in the crowded noisy pod that made a private room for his 5 days possible. Even seeming set backs - kinking his umbilical line at birth so they had to use IVs- enabled us to hold Him sooner and start nursing as umbilical lines are tricky so staff are hesitant to let you hold them. All amazing confluences of circumstances that let us have a whole week to work on eating and bonding before the surgery. What a gift.

Goodnight!

Doing well!!! so well! Almost totally weaned off O2. Docs should remove the breathing tube in the morning. They could probably do it tonight but apparently 12 hours after surgery is a dangerous time when things go wrong,
He looks so great though. Better than I ever imagined...:) so tired I'm going to sleep for a few hours.

1st surgery done!

Just found out, Macsen's surgery is done in record time and he's doing great! Woohoo!!!!!

1 hr into OHS

update: M has breathing tube and is now on bypass ready to start

This is it!

Just walked him back as far as we could. Waiting to see Dr Spray shortly. It's so hard to watch your seemingly healthy son go back for a surgery in which his health may turn for the worse. BUT he's been so awesome so far they keep calling him the Poster Child for HLHS. I'm pretty sure he's going to perform like his name means: the Greatest.

Today's the day

Quiet night last night so I think we may actually be handing our baby over to the surgeon today... In less than 2 hrs. This time feels real and I am afraid. It's so hard to look at my beautiful, healthy looking son and believe he has this fatal flaw... I know he needs this surgery to live and after It's finished and he's recovered we can think about bringing him home....

>SIGH<

Yet again, scheduled for tomorrow. Not holding our breaths on this one. I just hope no one else needs an emergency procedure -- for their sake AND ours!

Double-Edged

Well, no surprise we've been pushed back again. On the upside, it's only due to Macsen's awesome stability. On the downside, it means someone else is in critical need of our doctor's attention. Who, BTW, was up all night with the last emergency case. So, we're praying for those other families, their children, and also the CHOP team.

Surgery today

It's 1 am and Aaron and I have squeezed every moment out of our last pre surgery day with Macsen. We held him all day, fed him, changed him and held him some more. We left for an hour to eat but were called back to clean out our room b/ c they were moving M to a pod - a room with 4 isolettes. The noise and chaos -multiple beeping alarms, staff talking loudly as they walk by, squalling newborn in pain- is a big change from the quiet we enjoyed in our private room for the past 6 days. We were blessed to have a private room - it apparently is not the norm. It gave us a nice quiet place to bond with and enjoy our son.
We were scheduled for the 2nd surgery but just overheard we may be on 1 st at 6 am. Aaron and I don't want to leave him so we are crashing wherever we can find a spot... Me on a love seat - him on a recliner.
I'm exhausted and promise to keep you all posted..,

Monday Night Rumble

NOW the latest... went to dinner at 6:30 and they had some trouble with his prostaglandin IV... 3 tries to get it back online with the other hand this time. AND they want to do the PICC line AND probably surgery tomorrow. AND he can't eat at all starting 6pm today (Monday). It used to be 6 hours prior, now they're saying 18. (They are the anethesiologists who are so far into Cover Your A$$ mode on this they have their heads right up there!) None of the staff are happy about this. Finally got Alex to close her eyes and rest -- praying for strength, mother and child.
Hate to borrow a catch-phrase, but YES WE CAN! let's do this

Lifeline

Holding onto each other... Each one of us drawing strength from the other. He was sleeping, but would not let go when I pulled away. We've got a whole week to spend together before any surgery. LOVE this little guy!

He's so beautiful

Sorry I have been so terrible about updating. It is hard to post when you're holding a baby all day! That's right! We are getting some major bonding time this week while we wait for everything to happen. Macsen is very stable - still breathing room air. Only 1 IV with his prostaglandins to keep the ductus open in his heart. His umbilical line never worked unfortunately so they've had to put it in his hand. He's also an impossible "stock" meaning even the expert team of vampires they have here give up several times/day. They just can't get his blood to flow without rupturing his blood cells. So today they are scheduling a PIC line which should be more secure - just scarier b/c they put the line in an artery.
His oxygen levels are trending up - he's been upper 90's and up to 100. Sounds good right? Nope. Means his lungs are getting too much blood and his body not as much. They'll keep an eye on it but because his heart rate and blood pressure are good and steady they aren't too concerned at the moment.
He's been nursing pretty well. Such a different experience than with my girls - feed them when they cry and look hungry. Here I can't wait for him to let me know he's hungry. I have to make him eat. Not easy when they make him drink salt for his low sodium levels which makes him puke. He also has a pretty mighty gag reflex.
So we are not having our Norwood surgery today. Phew! We've been told Thursday was the day and then boom maybe tomorrow. I was not prepared to hand him over just yet - this week has been an amazing respite from what I have been imagining for months. It's been a gift to hold and love him and I am so grateful.
They've just come in to let us know they'll be taking him soon - putting him under sedation for his PIC line. His first procedure. Here we go:(

Mommy holding Macsen

Macsen is the greatest! He is pink and breathing AIR on his own! His tricuspid valve is holding and I'm getting to hold my son for the first time.

Macsen Gray Miller

6lbs 13oz born at 12:39pm

Alex did really well! Her team said it was the best delivery they'd ever helped anyone through. Perfect delivery, really fast and drama-free.
(Gab Fournet-Applegate)

He's here! Strong cries!

Almost here...prayers, please.

Contractions are coming every two minutes and lasting for about 45seconds. So far she's doing this all natural. No meds needed. She's feeling pressure and it won't be long. Prayers.
(Gab Fournet- Applegate)

On our way

Headed into the hospital now. We were scheduled for an 8 am induction but have been having some pretty good contractions all night. Hopefully we are well on our way already. Thank you everyone for the prayersxoxo

No baby today either

Despite doing my best impersonation of Sylvester Stallone and running up the "Rocky Stairs" I am still pregnant tonight :) We are now staying in a VRBO my sister found 1 mile away from the hospital. 4 stories tall! And she brought me for a pedicure today Thank You G!!!! Nana is here too to watch the girls so we are ready.

This is what Lyme disease looks like

Our youngest got a strange rash on her forehead that didn't go away over a few days - in fact it grew and was accompanied by a fever and irritability.wwhen it started covering her eye and we had tried Benadryl with no change we took her to a clinic and then on their recommendation to a Pediatric Er. They had to do a blood draw and she watched the whole thing - not flinching or crying out - though she did tell me later "It did hurt Momma." she's on antibiotics and we had to wait several days and visit another office for results from the titer test. We also found another teensy tick on her during the exam - think head of a pin tiny. Good news that we caught it so early and she's being treated. Bad news that she has to get meds every 8 hrs for the next 3 weeks right when we're about to be seriously preoccupied. I'm also upset that the ER never contacted us w/ the results even though they assured us they would if the test came back positive. We had to make yet another out of network appointment just to get the news. Poor little K has been noticeably tired and more irritable and not excited about eating very much. It was crazy though b/c within hours of getting the antibiotics her rash almost totally disappeared. I'm so grateful she was one of the 70-80% that develop the tell tale rash that urged us to bring her in and that she started on the medication so soon after contracting the disease. I'm grateful all this took place last week not this week when we may have been too busy to pay attention. So even though it's not the best thing to  happen it could have been a lot worse.
On a happy note my sister just came into town yesterday and was able to  get permission to work remotely from Philly for the next 30 days. She has a new home, new husband, and a large family and I so appreciate her sacrifice in putting her life on hold to be here for Macsen's birth. She was able to stay with us at Aunt Janice's last night but we've crowded this poor family out of their own home. Hopefully Macsen will come today - his DUE DATE ahem!!!- and we can all get started on the next phase of this journey.
Everyone's prayers must have kicked in because I feel ready now - screw you fear! We got this!

No baby yet

39 weeks and 5 days!! Still no baby. The doctors won't let me go too far past my due date - in fact they didn't want me to go 1 day past but have a really busy schedule until Friday so that's our induction day if Macsen doesn't come on his own. I don't think he'll make us wait much longer - in fact, I felt sure if Aaron hadn't made me lie down Thursday to stop my contractions he might have come then. Aaron wasn't quite ready yet and it was the 13th...
It's a weird feeling being excited and terrified at the same time. Lately terrified has been winning out... Too much time to think. At home there was normal daily living to fill up the day but here we are in this state of stasis-everyone waiting. We try to stay busy. In fact this week we had to take K to the emergency room for a fever/face rash that was spreading down her face. We are waiting for results from her Lyme disease test that she rocked! No crying or struggling - just watched the whole thing and told me later it did kinda hurt. She hasn't taken her ER bracelet off yet.
Yesterday we had our last scheduled OB appt and we brought the girls. Then lunch w/ Aunt JoAnn and a trip to the aquarium. The hippos were swimming which was so cool to watch. Today we went to Tyler Arboretum which was beautiful. They have lots of tree houses and fairy grottos to explore, hammocks to lie in and strange trees (strange for us used to seeing white pines and magnolias.)
It really is a beautiful place. The girls helped Aunt Janice gather kindling and we had a great cook out complete with smores. We had to wear sweaters - so weird because I know at home they are probably still knee deep in summer. Our friends at home had a car wash for Macsen - thank you guys for spending your Saturday doing this for us. We love you and miss you all. And we've gotten several care packages from friends and family while we've been here that help break the days up. Thank you Katie P, Barbara W, Barbara A, Christina C for the sweet gifts for the kids and thank you Aunti Judy for the weekly book delivery. You guys really make us feel loved. If i could request something for Aaron and Me, we would love some prayers for strength and freedom from fear so we can be excited to see Macsen - we know he has to come out soon and we have to start what we've been planning and researching for months. We are just so afraid.

39 weeks and still hanging in there

This is a photo from yesterday - Sunday - at the Pennsylvania Renaissance Festival. We were so excited to find out there was such a large faire a mere 60 miles away! Aaron and I LOVE the RenFaire. We go to the one in Atlanta every year and our first date was the one in Maryland. I know our friends at home think we're big dorks for loving the faire so much but we don't care - we go and buy our giant turkey legs, laugh at all the cheesy acts, play along with all the terrible accents, and try to buy something special for each of the girls.This year C picked a tail - furry and red that spins when she twirls, and K picked a pink dragon she named Fluffy that rides on her shoulder.  We were happy to share the day with Aunt Janice who we're living with while we're up here. We had a great time.
For those of you wondering my appointment last Friday went well. M's heart rate is still in the 140's and he's still growing/moving a lot. No more ultrasounds or echos so the midwife was just guestimating when she said she thought he'd be around 7lbs at birth. We'll take it. All my tests look good - no weight gain this week so we celebrated w/ a burger and fries from Bobby's Burger Palace :) We also met the family life specialist who will help us talk to the girls about what their brother is going through - and harder stuff if it comes to it. Apparently they have special dolls - cabbage patch dolls for those of you who know what those are- that they put the same tubes/wires that each individual baby has to prepare siblings for what they'll see. She assured us that usually kids are pretty resilient and respond better to seeing these fragile babies then parents expected. I hope so - C is so sensitive... I hope she can handle it. If not, they say don't push them. Just let them know it's ok if they want to wait in the waiting room and they can try again later.
So 1 week to go until our due date - if we don't go into labor by then they will start talking about inducing me. Probably before the following Friday. I hope he comes on his own. He's going to be pumped so full of meds and crap that I want to do my best to let him come into this world as naturally as possible. Maybe that's silly... probably. It's strange what becomes important in light of everything he'll go through - all the procedures and sedations, anesthesia and morphine and here I am worried about Pitocin. I admit it - silly. but I guess with so much out of my control I try to hold onto what I can. Like cutting out dairy. I've read numerous accounts of HLHS babies having issues with their gut - digestion- blood in their stool- that is hard to pinpoint so often they will say it might be a dairy allergy and look suspiciously on your preciously pumped and horded breastmilk as a possible culprit. So I cut out dairy at 36 weeks - just in case. Probably silly again - but apart from the occasional pang for pizza, or gelato, or almost anything off most menus- it hasn't been that hard and my body feels better.
So I'll have my last scheduled appointment this Friday. We'll bring the girls so they can see the hospital before they know a patient there - when they can just enjoy it. then we'll set up appointments/plan for next week if he doesn't come by then.
In the meantime we've bought 2 fresh pineapples - I swear that helped me go into labor with K- and plan on walking/swimming everyday.

Not home but in the home stretch

With 38 weeks only 1 day away I feel sad that our pregnancy is almost over. Not just because of the scary stuff looming after birth but because I love being pregnant. It's crazy I know - the toll it takes on your body and all that aside I love it. I love to feel them grow and move. I love the wonder on my girls' faces when they feel him kick or roll. I love to hear my 3 yr old sing to him through my belly. And i love when Aaron puts his hand on my belly Macsen wakes up and tries to play. I hate that some of our joy was robbed when we found out about Macsen's heart but am so thankful that we found that joy again and I know he feels it ... I hope he does. No matter what happens in the coming weeks I know it was all meant to happen this way. We, and everyone around us, have done out best to get Macsen where he needs to be to make it. I have to go into his birth and all that follows with the faith to believe it will be ok.

Great paper on HLHS

On one of my Facebook Heart Mom pages there was a discussion about mortality rates associated with HLHS. These rates vary greatly from center to center/ doctor to doctor and can refer to death rates after surgeries or long term... all very confusing. One of the moms posted a link to a really comprehensive paper published in January of this year http://content.onlinejacc.org/article.aspx?articleid=1096837 that breaks down some HLHS facts.
I love these heart moms. I never could have found this without them and am constantly reminded how lucky we are to have been diagnosed in the age of the internet and social networking. To have been diagnosed 10 years ago would have been much scarier and lonelier. I am in contact with several HLHS moms that live in PA and they are full of helpful info about the area. We ate Smores at a great restaurant they reommended called Cosi the other day - we all had a great time toasting marshmallows at our table. I think we'll do more siteseeing this weekend too. I want to get our picture in front of the LOVE sculpture, see the Liberty Bell of course, and the girls have been BEGGING to go on a horse and buggy ride. It is such a surreal state we are in right now - site-seeing and marking down the days - 19 days until his due date - all the while we have this huge unknown brewing on the horizon. We have to take this time for us - for our family - and just live it. Build up some good memories and squeeze out all the together time we can. We are taking lots of pictures and probably giving into the girls a little too much but that's ok I think.

We are here!

Phew! We made it to Philly and with only one casualty. We lost our beloved kitty cat Miette at the first rest stop we took in Georgia. In Aaron's words she turned into  a puddle of water and slithered out of her harness. We looked for hours and weren't able to find her. Carys sobbed and begged us not to give up but we had to get going. the drive away from the rest area was heart breaking - C crying and worrying aloud "Miette's afraid to go outside. She must be so scared. And it's getting dark. and look at those clouds - it's going to rain on her. She's not going to know what to do." Me silently weeping in the front seat - trying to think of something to say to ease her worry but not lie to her - thinking we've got 18 more hours of road trip ahead of us. then Kismet - ever practical - turns to her sister and says " Why you crying Carys? She's just a cat." In retrospect it is funny - but at the time it made me realize how many things in our life have had to become unimportant - get shelved or relegated as unnecessary- so we can get Macsen to CHOP. We brought what we would need to live in our minivan - streamlined our whole existence that takes up 2500 sq feet at home into  a few totes, bags, and 1 cargo carrier. All the toys, clothes and STUFF, and now the cat. It is just stuff but we've also shucked our whole routine, the girls' day to day and really everything and most everyone they've ever known. It's been a big week. We're still holding out hope that someone will find her and report her to the Welcome Center where she was lost but we have to move on.
We are settling in to our new home. Aaron's Aunt J and her family have been amazing. It's tough barging into someone else's home - especially with kids - for an uncertain and lengthy stay. No endpoint, no real "job" but to wait. But if anyone could make it easier it is this family. We are feeling blessed by the beautiful surroundings here and by this wonderful family.
Our appt at CHOP on Friday went well. I was so so so SOOO afraid we would get a repeat of our last appt there and the heartbreaking news that they thought Macsen wouldn't make it to birth. Everyone was encouraged by his functioning tricuspid - though they don't know if they should call it that as he only has 1 real valve. Every doctor will apparently label his heart in differant terms - depending on their experience and preference - but Dr D labeled his valve more of a common a/v valve. He really has a single ventricle already - very weird - but apparently they believe they can go forward with the regular surgeries for HLHS. We didn't get outcome #'s or percentages but dr D actually smiled and said he felt encouraged. I'll take it! We also found out Dr Spray - THE Dr Spray will be doing M's surgery! He's a rockstar of cardio thoracic surgery.
We took a tour of the special Delivery Unit - it didn't look vastly differant from our beloved delivery suites at Southeast Alabama med center where both girls were delivered. And we saw the pass through window where they will whisk Macsen after delivery from the delivery room to the room full of waiting neonatologists who will evaluate him and give us the final verdict on his heart. this window means we will not be surrounded by these neonatologists while I labor. Apparently just the OB and I think 2 nurses will be there with us - vastly different than the room I imagined teeming with specialists and experts hovering over me waiting for my baby so they can take him away. Quiet and calm...
We have NO MORE ECHOS! Crazy after 1 every few weeks and from here on out have only regular OB appts every week. We will meet with Child Life Specialists who will help the girls to process seeing their baby brother with tubes and wires and will also meet with a lactation consultant who will help me prepare for pumping/storing milk until the baby can nurse. Tomorrow we start homeschooling the girls and may check out the local YMCA. Other than that our days are open until little man decides he's ready to face it all.

Our bags are packed and we're praying for a unicorn!

This is it. No more waiting here in Alabama - tomorrow we start our journey to CHOP - our "Big Adventure" is how we've been marketing it to the girls. Our bags and totes are packed. The girls have commited to the toys they've chosen to bring and those that will be waiting for them when we come back - I picture a "Toy Story" like party in their playroom when we leave. Macsen's room is set up and ready for his tiny self...
I think I've been sort of in denial that this is all happening. I feel fine doing the day to day -  making meals, doing laundry, putting the girls to bed. But then something will bring everything into focus what we're leaving behind here... Big things like our closest friends. Our home with everything like we like it. And small things like my memory foam topped king size bed (so amazing during the uncomfortable last month of pregnancy.) The awesome people in the produce department that always go check if there are more organic apples in the back. And most heartbreaking for me at this particular moment? Carys's first day of Kindergarten... while everyone else she has grown up is excitedly double checking that their little ones backpacks are ready and by the door, that first day of school outfits are clean and laid out for the early morning we aren't doing that.... and I'm so sad. I WANT to be doing that instead. I want the worry of "will she be ok for a full 8 hours at school" to be the biggest worry we have. To hope all day that she likes her teacher and that she finds a kindred spirit in her class. Tonight I wish her bedtime prayer had been about her trepidation with the first day of school not the prayer she said 2 nights ago "Dear God. Please help Macsen's special heart. Please don't let him die."
I am grateful Macsen has made it this far - 12 weeks ago we were told he probably wouldn't- all his kicks and tiny baby punches have been a blessing we weren't certain we would get. And I am grateful we have the ability - thanks to our friends, family and community- to travel 1000 miles away to give him the very best chance. And I am grateful that what we face we will face as a family - all together - even maybe getting a few weeks before he is born to really spend time together. And I am so afraid because I don't know what is going to happen... I don't know how long we will be there, or how he will do after birth - will I get to hold him? Will the girls get to see him without tubes and wires? Will I get any pictures with him - of his perfect untouched skin before he is pricked, punctured, sliced open and stitched back together. Will he make it? Will we even be given the option of surgery? Will his heart be able to take it. If it's too much for him will Aaron and I know? Will we know when we should keep pushing him to fight or if we are only prolonging his suffering.
This month has been a really tough one for the Heart Community - an amazing group of parents I'm blessed to  be a part of on-line and before May never knew existed. They are an amazing source of information - some newly minted heart moms still waiting for their heart baby's discharge or veteran moms with 6 year old HLHSers navigating their own first day of school.  I've rooted on babies thousands of miles away when they go in for heart caths and surgeries, meetings with specialists. And I've reveled in the posts about kids playing sports - or in gymnastics, attending school. But with the triumphs I can now share in I am also exposed to the heartbreak, the sadness and tragedy when after months of fighting a baby loses their battle with the beast that is HLHS.
After months of cramming in all the information I can glean from hundreds of other heart parents and their daily  challenges in dealing with HLHS I still feel woefully unprepared for this. Because all HLHS baby's are so different from one another I don't know what information will be useful and what won't apply to our special little man. We'll do our best and that is all we can do. Sigh. So wish us luck on our "Big Adventure" with the kids, the clothes, the dog and the cat. And lest you feel overly concerned about Carys's loss of innocence because of all this she did finish her prayer with "And please God, let me have a unicorn. Amen." Baby, I'll pray that you never stop hoping for a unicorn xo

Last Echo before we leave

Dr Mary Mehta (Macsen's lovely pediatric cardiologist)
and Cindy Demos (the most awesome ultrasound technician ever)

 Our last appointment with Dr Mehta and Cindy went well. We went a day early to break up the long trip to Pensacola and to (more importantly) enjoy our last day at the beach. We had a wonderful time - the water was crystal clear and the perfect temperature, there were lots of shells to keep Aaron busy (that man loves treasure hunting) and we were able to relax while bobbing in the gently swells and bouncing off the bottom on the sand bar. Sometimes I just KNOW that someone "up there" is saying "Let them have a perfect day today, they'll appreciate it."

   We had a really great breakfast at the hotel restaurant - real half and half for the coffee and real butter for the pancakes then played in the hotel pool for a few hours. The staff was even nice enough to bump our checkout back for 2 hours so we wouldn't have to rush out. 

   We met Charlene  at the Mall and handed over Thing #1 and Thing #2 for 1+ hours of Mall Mayhem - train rides, and trampoline bungeeing, ice cream and candy! They're going to miss Charlene :)And while we were in our appt they were even able to spend a little time with their Uncle Sam who took his break and came to the mall too. 

    Our appt went well - I am always nervous when they first place the doppler on my jelly slimed belly that we won't find Macsen's heart beating - or it will have gotten worse. A split second of morbid dread then there it is - his heart - working hard. Dr M thought she saw a tricuspid valve leak - the one thing we check for every time and fear- and she and Cindy tried to reassure me that it was a tiny amount. Just to be sure they kept looking - waiting for Macsen to turn so we could get a different view. Eventually, a few agonizing minutes later while I tried to push away thoughts of what this tiny leak could mean ... would it get worse, was this the beginning of the end, the end Dr Degenhardt @ CHOP was most likely if his valve started to leak... they both agreed it was most probably a Ventricular Septal Defect (VSD) an abnormal opening in the wall, or septum, that divides the right and left lower heart chambers or ventricles. Not a big deal for Macsen as his left ventricle is so tiny - the blood goes in there and then just comes right back out. We saw this VSD at his last echo a lot more clearly - everything only gets harder to see as he gets bigger and more cramped. Dr M was also able to actually see his aortic valve - that was a  first. @ CHOP 10 weeks ago it looked like he didn't have a valve - we're not sure if it's functioning and if it will make any difference to his final diagnoses. He did have growth in his pulmonary artery which is a good thing - we need it to be bigger because it will be getting a pretty big work out in the years to come. We will miss Macsen's team in Pensacola though - hope we are blessed with an equally amazing one when we get to Philly.
  Can't believe we'll be loading up and moving out in 2 weeks- beginning the most critical part of our journey so far. I'm excited to see Macsen but so terrified. I am thankful Aaron will be able to be with me through the settling in, preliminary appts @ CHOP and for Macsen's birth. After that we'll have to see - I'll cherish his presence though - if we're together I know it will all be easier to bear. Not excited about packing up what I think the girls will need - don't even know where to start - I am admittedly the World's Worst Packer always bringing things we don't use and forgetting those crucial things I kick myself for not bringing... what clothes will they want, what toys will bring them distraction and comfort. It always comes down to how long will we be gone and we just can't say... Trying to prepare to be there until M's second open heart surgery but maybe he'll rock this whole being cut open and rerouted thing and we can miraculously come home.... a girl can dream. Never thought that would be one of them. One more OB appointment on Friday - then a week of packing and saying goodbye to our friends and family here in Enterprise... then it all begins.
 

Miracle for Macsen

Home tonight from the amazing fundraiser our friends, family and community put together - our last fundraiser before we leave for Philadelphia. I am truly humbled by the sheer amount of love everyone put into this dinner for Macsen and our family. When I think of our story - our life - that was published in the local newspaper this week I can't help thinking that isn't the whole story, the best story. The most moving part of all this for me is the way our community - people we know and love - and people we have never met - have come together to lift our baby and our family up and  help us with what is to come. That is the real story - that is the story that I will tell my baby when I want to give him strength, when I want him to know how loved he is, when I want him to hold on and fight. I wish I could have bottled up all the love in the room tonight so I could gulp from it in the months to come. Thank you to our Mom's Club, to our friends and family from Gold's, to members of the Grace Place Church, to the Slagles, Adcocks, Andersons, Wades, Masiaks, Braunds, Cooks, Pettis Family and Amy Simmons for your unwavering support and immense generosity of time, resources, spirit, and especially love. Thank you to everyone who came to eat with us and those of who you who donated items for raffle. Your hearts are all so big how can they not be enough to help Macsen's?

Evening at the Park

Last night after dinner the temperatures actually dropped below 90 and we were able to get out and enjoy our local park. The girls had fun in the Splash Pad and playing on the playground - and it was just nice to get out and see them having a good time. Every time we go anywhere like this - a place we've been coming to for years - our girls' entire lives - I wonder "Will we able to bring Macsen here? Will he ever ride that bouncy horse that both girls adored  - the ride on helicopter, the jeep. Will I get to push him around the walking paths to see the ducks and turtles?" But then I realize that is thinking too far ahead and I need to force myself to stay in the now - with them laughing and giggling and begging to be pushed on the swings.  

Hearts of Gold for Macsen

Tomorrow our friends here in Enterprise are collaborating with our gym we've been going to for 3 years now to host "Hearts of Gold for Macsen" a fitness based fundraiser to help us raise money for our impending move to Philadelphia for Macsen's birth. Here is the info :

Saturday July 14th at Gold's Gym Enterprise for Miracles for Macsen (Child Care available for donations). The schedule of events are as follows: 9:00 Spin with Jenny, 10:00 Zumba with Cindy, 10:45 Abs with Gilbert, 11:00 Body Sculpt with Gilbert, 12:00 Body Combat with John. There will be a 15 minute break in between classes (except abs and sculpt) so we can give away TONS of cool stuff! Hope to see you there! You do not need to be a member to attend, this is by donation only!

No matter how many people show up I know everyone worked really hard putting this together for us and we are so grateful. Thank you especially to Cathie and John Ramiccio, Gold's Gym in Enterprise, Jenny, Cindy, Gilbert, Brittney, Alicia, Courtney and all the other sweet ladies in the nursery that my girls LOVE!  We'll be there! And if you want a good laugh come out to see the super pregnant lady (me) kicking butt in Body Combat @12 :)