Wednesday, March 30, 2011
Trist.an Nei.l Wy.att
So as I mentioned before, I am 7 months pregnant with Trist.an Nei.l Wy.att, due October 19. I have to have a c section so they will probably take him the first week in October. Right now it as hard for me to look at scheduling that surgery as not scheduling an execution date.The technical diagnosis is- get ready for this- “unbalanced right dominant atrioventricular septal defect with aortic atresia and possible heterotaxy”. (I had it memorized the 2nd day after the diagnosis!) In lay man’s terms it means that the left side stopped developing because of a structural defect that caused the blood to all be diverted over to the right side. On top of that, the aorta also stopped developing and is a dead end, causing baby’s blood flow to reverse back to the heart. There is a missing valve and structures that should be on both sides of the heart are all on the right. The left side of his heart is virtually non-existent.
Now the possible heterotaxy makes things even more complicated and despite my medical background I have a hard time understanding it. Heterotaxy in general means internal things aren’t where they are supposed to be. The stomach can be on the reverse side, liver might be mid line, bowels may be flipped, there may be the absence of a spleen or many small spleens. From the organs they could see, like the stomach and liver, things appear normal. The cardiologist suspects it, though because of what he saw in the structures of the heart. We probably won’t know for sure until he is born.
The last complication is that Dr. Pechalski could only see one pulmonary venous return and he is not sure if it is fully developed. This is the condition which I am praying hardest against. If those veins are not there, we will have no options for treatment, as far as I understand. We will have 2 more fetal echos done before Tristan arrives and they will be looking for a better view of those veins, and the confirmation or dismissal of the heterotaxy.
After the level II ultrasound, we were originally told that it was a hypoplastic left heart, (HLHS). I shed a few tears after learning that his life expectancy would be only about 20 years, as the surgery only helps the symptoms and cannot repair the condition (called palliative). I thought about how worried we would be as our son went through his teenage years with the possibility that his mended heart could wear itself out any time. I thought about the stress of the hospital visits and side effects that would plague his short life. But then I felt grateful that it was a treatable condition, and at least we would have those 20 years, even if no new breakthroughs in treatment emerged in that amount of time.
At the echo, which was supposed to confirm the HLHS, we learned all that I explained earlier, and as Nei.l and I drove home I was overcome with the “loss” of this baby. Dr. Pechalski, the pediatric cardiologist explained that if treatment were possible, it would be the 3 stage surgery they had explained to us for the HLHS. The thought of all that pain and risk for such a tiny body overwhelmed me. And then the “if”.
It was for that “if” that we met with a the nurse and social worker of what they call the “Rainbow Kids” team. Rainbow Kids is there for pediatric patients and their families who decide not to treat a terminal condition, but instead opt for comfort care. As we had talked to a portion of the team, which consists of a pediatrician, nurse, social worker, and a few others, I felt peaceful about it. I felt like, at least if surgery seemed like such a long shot or wasn’t going to be an option, at least my baby could go peacefully and painlessly. And I would have some great people there for support.
So if we chose comfort care, how long would we have? I had forgotten to ask. Christmas. Christmas, I thought. If this baby could just hold on for 3 months, we could get through Christmas with some cherished memories of Trist.an’s brief stay.
They said that if we chose this option, they would discharge me from the hospital as fast as safely possible so we could spend as much time at home with Trist.an as possible. They also gave me a book to read, if I wanted, called “Waiting with Gabriel” , by a mother of a baby that they decided to choose comfort care for his HLHS. It was here that i learned Trist.an could hope for 2 weeks at the very most. Two weeks. That’s like a long vacation, a pay period, half of a month- not a life time! But for Trist.an it was a long life time. I was broken all over again. First 20 years they told me, then my only bright hope was 3 months. Now, 2 weeks at very most. Two weeks to spend with our son. I was devastated.
With each new detail of information, Trist.an’s life expectancy got shorter, and as soon as I would gain acceptance of the expectancy, it would be cut shorter. It all seemed so unfair.
But I know Heavenly Father has his hand in this, and I trust Him. As hard as it is to think of losing a baby, I know that things will be ok. I know if Trist.an leaves us for Heaven, I will see him and hold him and love him again. As upsetting as the circumstances are, I am not angry (though I was), or bitter. I do not blame God for having caused this. It simply is the way it is, and though I believe God could heal this, I am fairly certain that he won’t; that he will allow this because there is something bigger that I cannot yet see.