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.  

For When you Find Out More Than Just the Gender at the Ultrasound

On December 30th we went to find out if we would be welcoming a boy or a girl into our lives this summer.  We saw a little head, a tiny tummy, squirmy little arms and legs, and boy parts! I was in shock, I had been pretty sure we were having another girl.  After all, someone should wear all those pink clothes we have in the attic.  Norah had even told me we were having a "baby seester." As I sat there with my belly exposed processing adding blue into our lives, the US technician got quiet (very unusual for her - she is a hoot!)  She kept moving the probe over my belly and then she would pause, and move again.  At one point she said "I just need to figure out how he's laying" and then began to label his sides "L" and "R".  I knew something was up.  Our gender ultrasound with Norah was all of 15 minutes and we had been there for close to 30.  She finally said that the problem was that our baby boy's heart was located on the right side of his chest, Situs Inversus Dextrocardia.  It was essentially a mirror image of what it should be.  Just the heart, everything appears to be in place, at least on the ultrasound. This meant we would be needing an appointment with a Fetal Cardiologist.  I thought it meant immediately and we would soon have answers what it actually meant is that we would wait for our answers.  Almost a month of waiting.  My husband looked it up while we were still in the ultrasound room and found out that it's not as rare as one would think.  The rest of the appointment seemed to go alright despite our news.  We decided I would have a second cesarean section sometime in May. I would deliver him around 38-39 weeks partially because of "the heart thing" and also because I have placenta previa.  My OB told me she was more concerned about the previa than the heart, I realized later this is obvious because her job is to get a baby out of my uterus and into the world after that he goes to another doctor.  

I decided I wouldn't look it up.  I didn't need to psych myself out over something I can't control.  I didn't need to start asking questions to which I could not yet have answers.  God tells me not to worry.  Cast my cares upon Him.  So that's what I did.  For 12 days I didn't look up anything to do with dextrocardia.  I still thought about, wondered about and talked about "the heart thing."  I stayed off of wikipedia and WebMD until I couldn't anymore.  I didn't want to look like an idiot on the 22nd (the day of our appointment).  So with little more than a week until our appointment I "Googled" it.  

I had been told by several friends and some of them in the medical field that they knew a person who had dextrocardia or had seen several patients who had it and you would never know unless you were trying to find their heart beat.  That had been my mantra for the 12 days before google.    Normal but just an oddly placed heart.  I found that "normal" is possible but it is rare.  More often than not things are more complicated.  Complicated can mean Kartagener syndrome (problems with the cilia in nostrils and air passages), Double outlet right ventrical (both arteries come from the right ventricle), Endocardial cushion defect (the walls in the heart are weak), pulmonary valve stenosis, the heart has only one ventrical, transposition of the great vessels, ventricular septal defect (a hole that is present early on in the fetuses life did not close). 

There is still a chance that it is simple dextrocardia! Please don't think I have resigned myself to doom and gloom.  I am praying that in 8 days we will find out that our boy has an anomaly.  A little oddity that makes him different from his friends.  I did see a saying from a mom with a baby with dextrocardia, she said "I like that when I hold my baby our hearts touch." I know this is enough to make tons of men groan and roll their eyes but it did help me.  

Today I am being emotional.  It could be the hormones.  It could also be that in the last month I started having contractions at 15 weeks, went to the Dr., found out that I was not in danger of preterm labor but I do have placenta previa, fell on Christmas Day and dislocated a bone in my foot and sprained it badly, found out that my baby's heart is on the right side of his chest, got a cold, toddler got a cold, and my toddler got croup.  Yunno, it could be any or all of that.  It is weird that three times in the last 24 hours when I have been worried God has given me three different 90's worship songs.  Crazy, these are not songs that would be in my head for any logical reason! They aren't songs that have said everything is sunshine and rainbows they have been songs that have declared HIS greatness and ability.  Our God is an Awesome God.  Today I have heard in my head "Cast all your cares upon Him, he cares for you." 

I don't know what the appointment will hold.  I pray for good news but I am also preparing myself for the news that our sweet boy might need surgery.  God hasn't told me either way yet He has told me that He is in control.  For now I am leaning on Him for wisdom and strength, or trying to.  I am weak, I am human, I worry and fret, I rely on myself too often, I want earthly answers when I have heavenly promises, but that is not the end of the story.  I have Christ.  I have a supply of grace and mercy for when mine runs low.  I have a source of peace that I can understand.  After all, my God got me through the loss of a baby only six months ago surely I can trust Him to get me through the uncertainty of "the heart thing." 

Today, I will love on my wonderful husband, snuggle my beautiful baby girl, and plan for a bright and wonderful future of our little boy because "I will not worry about tomorrow; for tomorrow will care for itself. Each day has enough trouble of its own." Matthew 6:34