No go from Boston Childrens

Talked to Dr.Emani and unfortunately, but not surprisingly, Macsen is not a candidate for the bi-ventricle repair - mainly because he has no mitral valve to work with which is a big part of rehabilitating that undeveloped left ventricle. Sigh. And promising research they had to build a new valve apparently has not panned out and they are back to square one.  I was worried after coming across this http://www.annalsthoracicsurgery.org/article/PIIS000349751300372X/abstract that states "Management of unbalanced common atrioventricular canal (UCAVC) defect by a single-ventricle (SV) approach frequently results in poor outcomes." Macsen has unbalanced av canal in addition to HLHS and the surgery track he is on, known as Fontan circulation, is a single ventricle approach - meaning despite undergoing 3 open heart surgeries, he will still only have 1 working ventricle and according to this research will result in "poor outcomes." :( After reading this research, I kind of freaked - other than transplant which is so very tough to get for someone so tiny, is not guarenteed he could even get a heart, and opens him up for a whole host of new problems the Fontan is the only option for Macsen. But after talking to Dr.Emani, who participated in this research, he feels Macsen will be/should be ok as opposed to other children in the study, because to date M's tricuspid valve is still holding strong. His survival seems to repeatedly come down to that valve - the only one he has. Bright side?  It was good to hear after studying M's recent echo he felt Macsen's heart looked really good considering his defects and he wouldn't change his treatment course. To read an interview w/ Dr.Emani about the single ventricle recruitment program  http://vectorblog.org/2012/11/building-a-whole-heart-for-children-born-with-half/
So we are on track to visit CHOP in 2 months to get a full work up and start talking dates for his next open heart surgery. It will be an exhausting trip with visits with many specialists spread over several days but I look forward to seeing his cardiologist up there and the people that have been helping him since birth. We usually go visit the special delivery unit as well to show him off. It's great to see the midwife that delivered him - babies born in the SDU are always critical but the staff do their best to make the experience of childbirth as normal and wonderful as possible and I love to show off our little success story.
Macsen is doing well. Cruising more on the furniture and working on his balance. Picking up cute little tricks every day - his new one is "the cuddle" - he lays his head on your shoulder and sinks into your body - sometimes adding a little pat, pat, pat for added heart melting affect. He can now scoot forward and backwards on his little ride-on, can crawl on all fours instead of the army crawl, and has started to eat a tiny bit more. He has started putting more food in his mouth and although he mainly sucks it or chews it to a pulp then spits it out he MUST be getting some nutrients right? Excitingly, 2 days ago he ate 3/4 of a baby food jar of bananas and mangos! We cheered for every bite and he would wait until he had his Dad's attention before opening up for the next bite. You know how families bronze baby shoes? Well, I am so proud I think I could bronze that Earth's Best jar of baby food - it sits proudly empty on the kitchen table to remind me he CAN do this! We just have to keep at it. We have also found a solution to my drop in breast milk - still so important as it is 99 % of his daily intake. That solution is DONOR MILK - provided by my best friend no less who happens to have a little one 1 month younger than M. She eats organic and I know her whole medical history so feel very comfortable - and so very grateful- giving M her liquid gold.
I also feel I should announce - for the first time ever Aaron and I BOTH left M with a sitter so we could do something together. She is one of our best friends and the kids love her and we were only gone 2 hours and were less than 5 miles away BUT it was a good first step - deep breath! He had a good time and only fussed when he saw us walk in. Aaron and I had an awesome time at Body Combat though I am still sore 4 days later :)

Sucking Bacon Essence or showing off his Bacon tongue