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?