The Game of Chance and a Mother's Fear

The chances of having a baby born with a heart defect are 1 in 100.  Those chances double when you have already had one baby with a heart defect.  Not that 2 in 100 are really that many, but I've not been too optimistic about my odds (especially since the odds of having Enzo's specific heart defect are something like 1 in 50,000.)  Needless to say, I have been a little concerned about having baby number 2.

To be honest, to say I was scared to have another baby would be an understatement.  For a long time, I would cry just thinking about it.  First, being pregnant was not easy for me.  I'm sure I am somewhat of a wimp, because I know so many women who have had it worse, but I hated most every minute of it.  Second, labor and delivery kind of sucked.  I had an epidural, but didn't react too well to it.  It blocked out labor pains, but brought on various pains and discomforts of its own.  And then, when all was said and done and I should have had the joy of holding my baby, they took him away without me even getting to see him properly, let alone touch him.  That was followed by a night spent alone, a few hours of drug induced sleep, and waking up to find that my baby was in the middle of open heart surgery.  With no chance to rest and recover, I was discharged early so I could spend the next two weeks standing at the bedside of a very sick baby.  I got to hold his hand and touch his face, and if I leaned over in just the right way, I could barely reach up to give him a kiss. 

We got to hold him for the first time when he was 9 days old, and we brought him home at 2 weeks old - along with oxygen tanks, feeding tubes, and heavy narcotics.  Less than 4 months later, after worrying endlessly about a baby who wouldn't eat or gain any weight, he was admitted again for another emergency open heart surgery. 

With all of that, the thought of doing it again had me scared to death.  When talking about my pregnancy, labor, and delivery, I still say that there was not one good thing about the whole thing.  I would hear about women who love being pregnant, or those who say how beautiful and wonderful giving birth was and I just wouldn't get it, because there wasn't anything good about it for me.  The only thing that would ever make me consider having another baby was how totally and completely worth it it all was.  Even with what I considered a crappy pregnancy, delivery, and all of the stress and heartache that came with having a heart baby, I can't even describe how much it was worth it.  How Enzo was worth it all, and I would do it all again, and then some, just for him.

Only with knowing how much it was worth it was I able to think about having another one.  I thought, I can try again one time, and if it isn't a million times better (from pregnancy to delivery and after), then I will be done.  But I still wasn't ready.  I was still scared to death.   However, for the sake of health insurance and other reasons, the time came to think about having another baby.  I reluctantly went off birth control, thinking that I had a while to come to terms with the idea, since it took us a year to get pregnant with Enzo.  I was so not ready to get pregnant again that I actually got mad at James the one time he prayed for us to get pregnant.  But James' one prayer must have been stronger than my fear, because what took us a year before took us about 2 months this time.  I delayed taking a pregnancy test as long as possible, and when I finally did and the results were positive, I sort of just threw the test down on the counter...and went to bed crying. 

Thankfully, this pregnancy has been a million times better than the first one.  "Morning" sickness wasn't as severe and didn't last as long.  I don't remember having a single moment of feeling good while being pregnant with Enzo, and I threw up clear till the end.  This time, I have felt so much better - and have even had days where I didn't feel pregnant at all.  But even though this pregnancy has been better, I couldn't shake the fear that I would have another sick baby.

Because of Enzo being born with a heart defect, I'm considered somewhat higher risk and get to have more tests.  We had an early ultrasound with a specialist at around 16 weeks.  The 1st ultrasound looked fine, but it was still too early to really tell much.  The fear in me, however, was able to find something to worry about, in the picture they sent us home with of her little foot - with what looked clearly to me like 7 toes.  I had just read about another baby born with an extra toe, which turned out to be part of a genetic defect that caused her to be blind.  So I made sure to have the ultrasound tech spend extra time looking at out baby's feet when we had our 20 week ultrasound.  Unfortunately, baby girl wasn't cooperative, and we were only able to get a clear shot of one foot.  So, we may still have a baby born with an extra toe or two.  But everything else looked good on the 20 week ultrasound. Of course, everything looked good on Enzo's 20 week ultrasound as well.  I really felt that I wouldn't believe I had a healthy baby until she was born - and even then I'd probably ask them to double and triple check. (i.e. "Have you done a pulse ox test to check her sats?" "Does she look a little blue?" "Are you sure you don't need to do an echo, just to make sure?")

Yesterday, we were able to have our fetal echo.  Having gone to the echo lab at primary's countless times, I didn't really even think about what I was doing enough to worry about it.  Only this time, we were going without dragging Enzo along. We didn't have to make him go without food to be sedated, I didn't have to worry about him being grumpy from being hungry.  I didn't have to worry about him holding still enough or about bringing toys and movies to entertain him.  I just walked right in - and instead of putting a crying kid on the table, I sat down and had just another ultrasound.  However, unlike a normal ultrasound, with a fetal echo they zoom right in to the baby's tiny heart.  (Which, we were informed yesterday, is about the size of a thumbnail.)  We had been told it would take 40 minutes to an hour, but we were done after about 20.  When the tech left to talk to the doctor, James and I talked about our fear and how we worried about every little pause or sigh the tech had made while doing the echo.  She came back after a minute and sent us into another room to wait to talk to the doctor.  The doctor came in and told us that her heart looked....

PERFECT!

Of course, he had to do the disclaimer that there was still a possibility that, with a test like that, zoomed in so much on a heart so small, there could have been a small hole or something that they may have missed. But besides that, you couldn't have a better looking heart than hers.  The tech had even said how "beautiful" her heart looked.  She had held still and was in the perfect position for them to get a clearer picture of her heart than they can usually get in a fetal echo - and everything looks great.  With Enzo's defect, none of his pulmonary veins connected back to his heart.  So he specifically talked to us about the veins on the baby's heart.  He said with a fetal echo, they are usually happy if they can even see one of the veins connecting to the heart, because they are so small and difficult to see in their location on the back side of the heart.  But with our baby, they were able to see one vein connecting properly on EACH side of her heart.  So that virtually rules out any possibility of her having TAPVR, Enzo's heart defect. (We had been told that his defect was not one that they would be able to detect on a fetal echo.) 

Before yesterday, I would have said that no matter what they told me at the fetal echo, I wouldn't believe deep down that I had a healthy baby until I saw it for myself.  A sick baby and hospital trips and surgeries was all I had known, and I was still expecting that I would have to do it again.  The night before the fetal echo, I had dreams about holding a dying baby.  Today, on the eve of Enzo's two year birthday, I am at peace - I actually believe that I might have a healthy baby.  That I might get to hold her in my arms right after she's born.  That I will get to feel her skin on my skin, right up close to me for as long as I want.  I'm sure I will hold her extra long to make up for the time I missed with Enzo - it's something I still get sad about two years later.

Last week, as I watched my sister-in-law put my 3 month-old neice into pajamas, I stared at her little baby chest and realized that it was the first time I'd seen a little baby's chest without a scar since before Enzo was born.  I've seen and held other babies, but have never seen their perfect little chest.  I never got to see Enzo without his scar.  I love Enzo's scar - and we teach him to love it and be proud of it too.  It's proof of how blessed we are and how much our Father in Heaven loves us, and of how precious my little baby is.  But now I can have confidence that I will soon hold another precious baby of my own in my arms, and stroke my finger down her perfect chest - a different kind of proof of our Heavenly Father's love.