I get asked a lot how it feels to be pregnant with such a high-risk pregnancy and whether I'm glad I found out before baby was born. The answer is it's different...and yes and no. For baby's sake, I am so so glad we found out about the heart condition before birth. The one thing research has shown is that babies who are diagnosed prenatally tend to have better outcomes than babies who don't get diagnosed until after birth. That's not to say that parents don't lose babies diagnosed prenatally (there are a lot of other risk factors as well); just that the outcomes generally tend to be a bit better. I think it has to do with the way that HLHS progresses after birth - the ductus closes (absent medication to keep it open), all of the sudden you don't have oxygenated blood flowing to the body, the body goes into shock and you end up with multi-organ failure. So, with babies diagnosed after birth, the doctors are trying to stop and reverse damage done in a really critical time, whereas when the baby is diagnosed prenatally, the doctors can stabilize the baby and focus on the palliative surgery alone. So yes, for baby's sake, I'm so glad we found out.
But for our sake, the question isn't quite so easy. Being pregnant with a baby that you know you may not bring home from the hospital is a really weird place to be. You bond with the baby, you rejoice over the kicks and the bumps you feel in your womb, but it's always bittersweet. You don't buy baby clothes or pack a going-home outfit for the baby, because it will just be too painful if you have to put away the clothes unworn. You don't set up the bassinet or the crib, because you don't want to stare at it empty. You want to have hopes and dreams for your child, just like any other expecting parent, but you don't know if you're allowed to have those hopes and dreams. How much harder will it be then if you lose the child? Now, I don't know that I've ever been allowed the blissful feeling of being pregnant and having all of those hopes and dreams. Since we had 2 miscarriages before Sierra and lost the baby last year early in the second trimester, I've always had the sense that pregnancy and life are fragile. But, for obvious reasons, it's even more acute during this pregnancy. There's nothing you can do, medically speaking at least, to help baby, so you just go along with the pregnancy and hope for the best. And, if like us, you believe in God and Jesus Christ, you PRAY.
So, where does that leave us? Waiting on a miracle. We've been trying to prepare ourselves for what lies ahead - the surgeries, complications, stays in the NICU and PCICU, the feeding tubes, you name it. And we feel really at peace with it (thanks to all of your prayers, I know!). But in the midst of all of this, we've lost sight of the fact that God could STILL work a miracle - he could still completely heal this baby's heart in the next 3 weeks. After the numerous echos/ultrasounds/specialists we've seen, the only way it would happen would be through a miracle.
We know that we worship a God who answers prayer, and the Bible (and many of your lives) are replete with examples of God performing a miracle simply because enough of his children petitioned Him. I know a lot of you pray. If you do, we are asking specifically for you to intercede on our baby's half during the next three weeks and ask God for a miracle. We ask that this baby's life would be spared from the difficulties of an HLHS diagnosis and that the medical community would be stunned by the healing that takes place in baby's heart over the next 3 weeks.
We know that a miracle may not be God's plan, and if not, we're ok with that. In that case, we'll have new specific prayer requests once baby is born. But it is our ferverent hope and prayer that God would see fit to completely heal our baby's heart before birth. Won't you please join us in waiting on a miracle?