New Diagnosis

We had an appointment on Wednesday for a fetal cardiac echo.  It took three technicians and an hour and a half for the actual echo.  During this 90 minutes we heard tons of acronyms thrown around we also hear a lot of "Is that?.....hmm....well that's good" and a few "do you think that's.....? yep, that's what I thought."  After the second tech we learned that our boy's heart was in fact on the left side of his chest (where is it supposed to be).  That led to a sense of relief immediately followed by dread because they were still looking, still commenting, and still "hmmm"ing. I heard "VSD" "common atria" "DORV" and a whole lot of "PA" "RV" and such.  Because before I was a stay at home mom I was a nurse all of these things made me cringe.  Our boy was also very uncooperative.  For most of the 90 minutes he was transverse and in a ball with his bum to them.  I was poked and prodded, asked to lay on my left and then right side my belly was gently manipulated and then later I had that stupid probe pushed far enough in my chicken nuggets were displaced.

After "the legend" of a tech was done with us the Dr. disappeared and we went to the conference room to await our news.  We waited there for about 15 minutes while he went back and forth down the hall with pictures he had drawn of hearts.  

He came in and sat down, we thought we were ready, but we weren't.  The new news is that our boy does not have dextrocardia, it perhaps would have been easier if he had.  Our new diagnosis is "Probable Right Atrial Isomerism."  While his organs were forming and being told where to go most things got labeled "right" and so our boy (if it is truly RAI) has morphologically 2 right lungs and 2 right kidneys.  We do know that his stomach is on the right (which is the wrong) side of his body and we also know that he has complete AVSD.  This means holes in his heart.  Two of them, one between the atria and one between the ventricles (this one is fairly large).  We know he will have open heart surgery in the first few months of his life, most likely before 6 months.  Another issue with RAI is that most (like 95%) of patients with this diagnosis do not have spleens.  I know you can live without a spleen, but I don't like it! 

There is not a ton of information on this condition on the internet that is very current.  Most of it is doom and gloom and bleak outcomes but most of it is at least 20 years old.  Our cardiologist seemed to think that though this is still heart surgery, it is not the most difficult heart surgery and the outcomes are pretty good.  

Now to process all of this, a lot of times it doesn't seem like real life.  Are we really talking about heart surgery? Will I be able to feed him? Will we sleep in the first year after he is born? How will our toddler handle sharing Mommy and Daddy with a baby brother that will demand a lot of attention? How many tubes and drains? How much pain? Will he play? $$$? Am I eating enough? If I lay like this can he breathe? Do I buy clothes? Just newborn? Will he grow? How big will his scar be? How hard will it be to recover from open heart surgery without a spleen? Who can we trust to open our baby's chest and mess around with his heart, another hospital, another state? God, can you just fix it? Are we going through this to reach others for you? Can't I just invite people over for dinner? Will he live? What type of quality of life are we talking about? Will I ever be able to leave the house after May? Am I going to be that crazy hand sanitizer mom? Does having a baby with CHD and no spleen give you license to be the crazy hand sanitizer mom?  

I just want to touch my nose to his and give Eskimo kisses.  

I have to know that God has this.  He's not surprised.  He's given us months to prepare.  He has never failed me before and I don't expect Him to start.  

Our boy is safe where he is.

The verse I've been given this week is "I will sustain you" 

He is still an awesome God.