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.