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This little box I gave Neil, holding a positive EPT and so many hopes and dreams of a little boy meant for our family.

This little box I gave Neil, holding a positive EPT and so many hopes and dreams of a little boy meant for our family.

We had another fetal echo done last Wednesday. Its always something new, so I guess I should stop being surprised. This time the cardiologist was able to get some very good views and see a lot more of what is going on. So we can just cross out the last diagnosis and start back at square 1! Dr. Petrowski said that this is definitely a hypoplastic left heart.

If this were the straightforward problem they could do the 3 stage palliative surgery and Tristan would have an 80% chance of survival. Of course, with us, nothing seems to be simple or straightforward any more!

The problem is that, the success of this surgery is dependent on the condition, strength, and health of the right side of the heart. Tristan’s tricuspid valve (the one that separates the right top side from the right bottom side) is dysplastic, (it leaks), and the leak has gotten worse since the last echo. The leak, or regurgitation, is causing stress on the right ventricle (lower chamber), and it has significantly enlarged (hypertrophy) since the last echo. There are measures they can take to help a regurgitating valve, but his valve is not  a good candidate. The leaflets are thickened about 3x what they should be and he would need a whole valve replacement. With all of these complications, Dr. Petrowski gave him about a 50% chance of surviving the 1st surgery.

This also means that since his condition is deteriorating in utero. With the HLHS we would not have to worry about that because everything being “wired” through the umbilical cord and placenta takes the work of the left side of the heart out of the picture and it would not be until he was born that the symptoms would begin. With the right sided problems, however, stress is being put on the heart. We have a 1/3 chance that he won’t make it to birth, alive. Also, if this were only the hypoplastic left heart, his death would come as a gradual slowing of the heart, he would go to sleep and that would be it. Now we are looking at right-sided heart failure; a new born baby suffering a heart attack. I don’t even want to think about it.

We have so many questions and uncertainties about the immediate future. Now we are left to make the decision of what is best to do, based on a fallible equation of whether the risks and complications of taking him early outweigh the probability of his heart giving out before full term.

Many have asked us whether a transplant is a possibility. The problem is that neonatal hearts are so hard to come by. there are about 4000 babies on the list with an average of 70 donations a year. Primary Children’s  does not typically do them because a transplant has its own whole separate list of problems and complications, and especially with a newborn. Usually they will do the first 1 or 2 surgeries of the palliation to buy time for a baby waiting for a heart, but since Tristan is a very poor candidate, it has not been a major consideration. Plus, we would probably have to go to Denver to await a heart and have this done and the probability of making it to that point is almost non-existant.

As of right now, the c section is scheduled for October 12th but that was made before all of this came to light. If things go along as currently planned, then that will be his birthday. We have decided not to put him through the surgery with such low odds. Especially since the chance of survival will most likely keep dropping from this point. We will do 1 or 2 more echoes to make sure that this really is the way things are going. If , by some miracle, things turn around and his odds go up, then we may reconsider our decision.

As things stand we are planning to hold his funeral on Saturday the 17th of October, and this week is already starting off very hard as we have decided to use this time to plan and finalize as many of those details as possible. We hope that by doing this, we can get this part out of the way and concentrate more on celebrating and thinking about whatever little time he has here.

I am sorry this entry is so down. I wish we had better news. I just can’t believe that our news just gets worse and worse. We really need all the prayers of strength and comfort we can get right now, because I am not sure how much more Neil and I can take.

I have 2 wishes that I am praying may come true. First, I don’t want him to suffer. I hope he can die a painless death, and 2nd I just want to hold him while he’s alive. I am scared he will either not live to birth, or I won’t make it off of the OR table before he goes. That’s all I would really ask, and I will consider these to be small miracles, should they come to pass. And if they don’t then there is reason in it, and maybe someday I will know why.

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So as I mentioned before, I am 7 months pregnant with Tristan Neil Wyatt, 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."As I Have Loved You"

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. Petrowsky  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 Neil and I drove home I was overcome with the “loss” of this baby. Dr. Petrowsky, 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 Tristan’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 Tristan 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 Tristan 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 Tristan 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, Tristan’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 Tristan 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.