Dr. Friedman stopped this a.m. to give us his parting for now words and plans for the future.

His reminder that the odds are pretty much highly stacked against us (50-60%) were not what we needed to hear. 

So I just didn’t listen 😉 .

Marshall is going to need a more in depth round 2 surgery than I had expected or planned for.  So we have to really fatten him up and build up more of his super strength.   The issue is the pulmonary venous return and his unique anatomy.  Basically if Marshall gets big enough, Dr. Baird & Dr. Luis have more tissue to work with.  Ideally, the next surgery will be in June. But Friedman assured they can do it sooner (with increased risk).

**I’m omitting the conversation I overheard nurse practioner Michelle having with Friedman when he left our room for the sake of what little is left of my sanity.  Lets just be thankful I trusted my instincts about the TAVPR repair and didnt have to argue with Harvard’s best. ***

If you can, please please please send positive powerful thoughts & prayers that Marshall becomes a fat (but not too fat) baby in the next few weeks after we get him home. 

And please send some for good health too if possible.

Part of heterotaxy is too much or too little spleen (but neither way allows for proper immune function). So since  Marshall’s system has been significantly impacted by the open heart surgery and his immunity is lowered significantly by the spleen issue, we could be shipped back here over something as simple as a cold. Which could exacerbate his heart conditions. And really and quixkly become disasterous.

Which means we may have to “quarantine” ourselves and him from everyone to eliminate risks. This may reduce me to tears…

Despite all of this and Friedman’s warnings that we are more than bound to have bumps in the road, I told him we wouldn’t see him again until June. 

And I meant it. 

Marshall has already been through so much in the 20 days he has been here.  I’m obligated (as Marshall’s mom) to help him shoot for the moon.  Every kid deserves a person who endlessly believes in him. 

And I was blessed to have four kids to believe in.

Now for good news: unless Dr. Baird and Dr.  Luis say otherwise, it is looking like Marshall will have his first official appointment with our pediatrician at HOME on FRIDAY!  AAANNNND WILL SEE DR. SMITH EARLY NEXT WEEK.

AND…drumroll please….MARSHALL WILL MAKE HIS DEBUT IN NEW YORK IN THE NEXT 24 HOURS!!!!! 

They upped the calories in Marshall’s milk. And he hates it.

So he “hulked” all night.. there is no other way to describe it.  When the little man issn’t asleep or eating, he is in a “hulk SMASSSHHHHHHH” mood. 

And when Marshall gets angry, he gets really really angry.

When he is mad enough, he can almost roll over already!

Despite what the team here thinks they know, his weight hasn’t gone up. He did better on the skimmed breast milk than all of this fortified nonsense.

We are soooooo t-i-r-e-d.

Tonight is a big night.

We are in charge of all of Marshall’s care. The only help we get from the nurses is they bring the bottles for him (since they keep the infant nourishment room locked.)

We monitor & record his stats, feeds, mood, diapers, and all of the things they need to keep track of during the interstage process (crucial time between surgeries).

Please wish us luck! 

He is only 19 days old but he can smile.  I have the video to prove it (it just needs an edit.) 

PASSED!

And many thanks to the Le family for the great seat, gifts, and food!!