Trip to CHOA

   First,  I want to thank everyone for their thoughts and prayers for our trip today. The drive to Atlanta and back was quick and uneventful  which was made possible by our awesome friend Kristina who watched Thing 1 and 2 for us - ALL DAY. 8 hour roundtrip = no fun for a 5 and 3 year old.
I was really anxious on the way to the appointment. I knew I would be so I brought the huge box of photos I ordered in 2010 (yes you read that right and that was the LAST time I ordered prints of our family - gasp) to finally put in an album. I got through about a month's worth and my phone rings - it's another HLHS mom and nurse our cardiologist thought I would like to meet. Her son is 3 with HLHS and she has 2 daughters too. She had really great things to say about Atlanta and Dr Kanter, their chief thoracic surgeon. We talked forever and the trip there just flew by so "Thank you Jodi!"

   So, what do we think of CHOA? We really liked it. It definitely felt smaller then CHOP - and I liked that about it. We really liked the nurse, Tracy, that gave us a tour of the facilities and talked to us about the flow of events that typically happen after the baby is born. Prostaglandins administered to keep his ductus open in his heart so his body continues to get the oxygenated blood he needs, probably intubated because they often stop breathing after the Prostaglandins are given, then brought from the hospital where I will deliver to Childrens which is about a 20 minute drive away. Then a full work up of tests to see what his heart is doing and what it really looks like because until he's born they really don't know.

   We went in the surgical ICU and stood a foot away from a newborn recovering from his open heart surgery. So tiny and beautiful. So heart-wrenching with the tubes and the monitors. I teared up which caught me off guard - here I 've thought I steeled myself by watching HLHS videos on YouTube and poring through other survivors and angels postop pictures.... nope, not steeled. A blinking, stunned mess trying to keep it together. Aaron got about 3 feet away and stopped - couldn't come closer. And, the worst part? The nurse told us Macsen would have 3 times as many tubes and wires when he gets out of surgery.

   Dr Kanter was very honest without being brutal. He also has doubts about Macsen's tricuspid valve -  even using the term "ebsteinoid" (referring to another heart defect called Ebsteins Anomaly) http://childrenshospital.org/az/Site1963/mainpageS1963P0.html  Macsen's valve is not leaking and he has a few other differences that kept the doctor from saying definitively that it was E.A. but the way it is positioned and the way his heart looks on that right side are similar. When you have just one of these defects surgery is possible and the baby has a good chance - but with both the right and the left side being compromised... not great.
   We knew this already  - we weren't expecting awesome news. We were there during the echo that Dr Kanter was talking to us about and had discussed it with our Cardiologist. We are trying to focus on the fact that his valve is not leaking - not that if it does, and all the experts we've talked to are surprised it isn't, our baby can't make it to birth and will have very few options if he does make it to birth.

Can't focus on that - push that out of mind.

Those thoughts are there - always crowding their way in when I let my guard down but I die a little every time my mind creates that reality. I can't live through it a hundred times in my mind. And if it does happen will I be any more prepared for having lived the possibility over and over in my head, my heart? I don't think so - I think it will be just as horrible- maybe more horrible because I didn't enjoy the time I have now, today with this baby boy. Feeling him grow and twirl- feeling his heels push my belly button inside out. I love him and I  have to do my best to stay in the present and enjoy what I do have.

We have another echo in 12 days with our cardiologist in Pensacola. We'll see what his heart has done - if anything has changed, grown, gotten better or worse... that's all we can do. Appointment to appointment always a mystery. I have a regular OB appointment tomorrow - kind of appointmented out... Please keep us in your prayers - prayers for Macsen's heart and for mine too

Technical Difficulties with Internet Explorer

If you are using IE (like me, but not my wife Alex who is using Chrome) then you may have noticed some issues with the YouTube videos bleeding over into the other pages when you navigate away. They will stay on the screen in the same location as they were from the Home page. Google has been notified of the problem. Until a fix has been accomplished, you can simply scroll UP or DOWN on the Home page until the videos are off-screen, then navigate to the other pages.
Sorry about ther inconvenience.
- Aaron

Just when I need it

   Yesterday was a weird day. We were interviewed for an article in our local paper - thankfully the interviewer was a dear friend so I'm confident she can get our story across in a way that won't make me cringe. In the past when I've been quoted I always feel I come across as a much different person - flippant, or arrogant, or just generally unlikable and that's not who I strive to be at all.
So, I was nervous. Her kids and our kids played during the interview and we had to stop several times to quell some small uprising or solve some preschool girl crisis.
   Well, all the questions were very straightforward and I should have been able to easily answer them but I couldn't. Questions like "So, have you decided where you will be pursuing treatment for the baby? What are you going to do with your older children while you are with the baby?  Will you get the surgery or put him on the transplant list? How long will Macsen need to stay in the hospital after his first surgery? What will his care entail once you are able to bring him home?" Some questions we'll be able to answer in a few weeks - once we meet with the team from Atlanta and see what they think they can do to help Macsen. Some things we can plan after that decision is made. And some things, many things,  we just can't plan for - just can't know until we're right there - living it.
   That's tough - that open-endedness... all the what if's. The worry was on again yesterday - the fist of dread that squeezes my heart until I want to vomit.
   I was blue - again - and trying to shake it off and then I get this message on FB.

 
Mission accomplished! Thank you God and the Universe for this - seems like when I am at my lowest point thinking Macsen can't make it with all that is stacked against him someone sends some Hope to me.

Jeni made a movie about her journey with HLHS and I'd like to share the trailer with you - just to give everyone a little hope too.


   I also really want to thank our friends and family that have been sending us funds to help with Macsen's care. Your generosity and love keep us going too and we know we won't be able to do this without you.

Baby Mine

                                                                                        song by Alison Krauss

Today's appointment

Some of you know we went to Pensacola today for our requested cardiology appointment. After our appointment last time w/ the maternal medicine guys I feel a lot better about this one. It was at Nemours Childrens Hospital in Pensacola with Dr Mehta. She will probably end up being the baby's cardiologist if we are able to bring him back to Alabama. She (and the echo tech Cindy)  do the echo together and explain everything as you go along - so great when you're used to lying there and having the tech say "I can't really say anything. When the doctor comes in he'll tell you what he thinks."
  They pointed out the tiny aorta that we already knew about - it measured .26 when the pulmonary artery next to it measured 5 (they should be roughly the same.) It has retrograde flow meaning blood is going backwards in it which we knew also. The ductus is open and plenty of blood is getting to the baby - as long as it stays open. It naturally closes after birth and that is why we have to get him treated right at birth - to keep this open as long as we can with medications until his first surgery can be performed. She spent a while studying his tricuspid valve and was happy to tell us it is NOT leaking - great news. It is differant looking though and located further down than normal.  The DR did say she couldn't see the left ventricle at all - they had been able to see a tiny slit like area at CHOP but she couldn't even see that.No aortic valve or mitral valve.  She also said she feels the baby's heart is lying differently in the baby's chest - she was able to see blood flow in and out in the same plane on the echo which she said is impossible - usually. Hello, meet Macsen! His right ventricle looks different too  - she kept saying "primitive" and when you're talking about a power-plant to power a whole body primitive doesn't sound good - I see Flintstones feet running to power his car. Aaron thinks he's just a super baby that's adapting and changing his physiology to survive - crazy man - I love him so. Dr Mehta wanted to study the images more and will watch everything again in slow-mo and call us. We see her again in 3 weeks. She's also setting up an appt with Childrens in Atlanta so we can meet their team and tour their facilities. I don't want to rule them out yet. I know having the baby there and getting him treated there would be easier on me and my family - I just don't know if it's the best thing for Macsen. I'd like for them to see his heart and give me their ideas/odds/statistics.
   Great things from the past 2 days?

•    The girls had a great time seeing their Uncle Sam who made us sushi - nothing raw for me - but all delicious. And his girlfriend Charlene brought them to a movie while we went to our appointment and then to Toy's for Us (the girls used to call it that and I can't let it go.) Such a blessing. It's hard talking about all of this with a doctor with your 5 and 3 year old in the room. 
• We were able to celebrate Father's Day at the beach where Aaron got slightly crispy but found tons of cool shells.
•  Dr Mehta loaned us a book "The Heart of a Child. What families need to know about heart disorders in Children." 
• The room where we got our echo - where the baby will have to get echos as he gets older - was dimly lit w/ led candles flickering on the shelves and one of those motion aquarium lights. And a super comfortable bed - not an exam table. Such small things but so great.
    

Humbled and Hope Filled

So today was a good day. It started out sad and depressed - will the baby even make it to birth, what are his chances of making it 40 weeks, what will our life look like in 14 weeks, where will we live, where will my daughters be, will this break us and right back to will he make it to birth?
But enough of that - I've had enough of it. I can't live like that. I just can't continue to function thinking he may die at any minute - or not - or maybe - or not. Ahhhh! So this is what I am choosing - he will live. He will make it. I know some would argue to "expect the best but prepare for the worst." But how do you do that in this situation without getting bogged down in the worst - losing your child? So I'll acknowledge the worst - Macsen has a 50% chance of dying - but dwell on the best - that he has a 50% chance at living a really great life with us! And that's it - let's move on!

Great things that happened today?

Our friends and family are amazing! They had a big meeting today to brainstorm ideas on how to fund-raise for us. Humbling to have so many great people working on our behalf - trying to help us so we can get the very best odds for Macsen. They have all kinds of ideas like Zumbathons, 5K Fun Runs, Spaghetti Dinners...

I found this Blog - http://wodzisz.blogspot.com/ And I really think I was guided to it. I can't even tell you how I found it. All of a sudden I was just reading this story about a little girl, diagnosed with HLHS that wasn't supposed to live. I went back and read her mom's posts from 2 years ago and how the doctors had very little hope she would make it to birth or even be strong enough for the first open heart surgery. And here she is today - thriving. And her name is Hope - of course it is.

And the last great thing? As my husband was leaving for work he said "Oh, I meant to tell you  _____ told me he's not a prophet or anything by any means but he just has a really good feeling about Macsen - that everything is going to be ok." Why does this bring me such comfort you ask? This feeling a friend of ours had? I don't know. It just does :) Sometimes it's best not to examine every little thing and just accept.

All about your heart

Denise, at Children's Hospital of Philadelphia recommended this group to me - Sisters by Heart (http://www.sisters-by-heart.org/) They are HLHS moms who send care packages and offer tons of support to us newly diagnosed moms. I am very grateful to have found them. And even though this video makes me cry it tells me I can dare to hope that Macsen might be like one of these heart warriors - he might make it. I can let myself hope. 

4 weeks ago

   Has it only been 4 weeks? Has it been 4 weeks already since we heard the news that changed everything - absolutely everything - that Macsen had HLHS. Seems like a lifetime and also like yesterday. I can still remember how it felt not to worry every second about his heart and what we're going to need to do to be in a position to help him. Now it's all I think about... ever. 

   We had another appt at Sacred Heart and I am still not a fan. I'm sorry. I have a dear friend who had very preemie twins there and they saved their lives. It was amazing. But for us we're just not having any luck.

Today we had another ultrasound and another echo. Ug. I remember when I used to look forward to those now I'm so afraid they'll find something else wrong. We had the same ultrasound tech but a different doctor (now we've seen all 3 in the practice - yay.) Our main worry today was that his tricuspid valve would be leaking - that was the big thing CHOP was worried about when they saw his heart 2 weeks ago - although their Director thought that since it wasn't leaking at all it probably wouldn't start (based on the 250+ cases they're following.) So, the ultrasound tech says "No, it's not leaking" - then the doctor comes in (not a cardiologist) and he seems a little disoriented when he's looking at the heart - the tech has to point out that he's actually looking at it backwards. He says the valve IS leaking but not to worry about it - that  the big concern is the HLHS. Um. Ok. But the doctors @ CHOP - one of the top places for HLHS research and treatment in the world - told me if the valve starts leaking Macsen will probably die in utero or shortly after birth and they won't be able to help him. .. 

   So do we worry? I can go from zero to worry in .06 seconds but Aaron isn't worried. He's choosing to go with the ultrasound tech's statement that there is no leaking and thinks the Doctor was confused. I requested an appt w/ a pediatric cardiologist - which incidentally  seemed to offend the doctor - that I would want a *gasp*cardiologist checking on my baby's heart not an OB. Sigh. Feeling frustrated that we made the 4 hour trip, had to get a sitter for the girls, for this "uh" feeling. I'm wondering if I can cancel my high risk appts w/ this practice and just see the cardiologist until it's time to go wherever we're going for Macsen's birth. 

   I did get my hopes up after seeing http://health.usnews.com/best-hospitals/pediatric-rankings/cardiology-and-heart-surgery. Childrens Hospital in Atlanta rated #5 for cardiology and is a mere 3 1/2 hours from our home. How awesome would that be? My oldest could start kindergarten here like we've always planned. Aaron would always be only 3 1/2 hours away - a car trip! sure I'd still have to live near the hospital for a while before birth and after but not 1000 miles away rom my home and my family.   Still checking into it but CHOP's outcomes are better - especially for a high risk HLHSer and I'm trying to stay realistic. Tired of being realistic though. Reality sucks right now.

   So, how to feel after the dreaded leaking tricuspid valve diagnoses? I'll try to keep from  worrying  until a cardiologist does an echo of the baby's heart. If they tell me the same thing I have no idea what we'll do... what we can do. 

Rollercoaster

When we first heard the diagnoses of HLHS the doctor looked at me and said "Now, don't go and Google it or you'll get a bunch of scary stuff." I looked at him through my tears and said "Yeah, right! that's the first thing I'm doing when I get home!" and it was. He urged me to stay away from blogs and stick to the hospital websites about the condition. Try to stick to the stories of hope. But as I've met more and more heart mamas on line I've checked out their sites, their blogs, their stories. Sometimes they're amazing and sometimes... so heartbreaking. There's such a fine line between trying to prepare myself - arm myself with knowledge - and burying all my hope with these little babies that couldn't make it - despite the best surgeons, the newest techniques and all the prayers in the world.