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.