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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.