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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.

I was worried about the way the last entry might be taken, and I tried to clarify in my Comments. I am so grateful for the optimism and support from everyone; for the affirmation in the existence of great miracles of health and healing. The point was more to remind myself, and those who read this that miracles come in many shapes and forms- and not always the one we wish for most.

I had a great conversation with my sister-in-law, Andrea, last week. We were talking about principles of prayer; specifically praying through trials. Her story is not mine to tell, but suffice it to say that she faces a sad trial in here life in which she is trying to figure out her part. Wondering whether she is doing enough on her part or whether she needs to leave it more in the Lord’s hands; whether to pray for and expect a miracle, or to accept what currently is, as the Lord’s will. In these situations, what should we be praying for?

In Relief Society yesterday, we had a great lesson that tied into this dilemna, and had me in tears from the very start. I almost left the room several times throughout, for fear of a sob welling up inside and then escaping for all to hear! Sister Hardman started off by playing the 3rd verse of the song “Which Part is Mine?”, by Michael McLean, in which the narrator of the song goes to prayer for her children, wondering if she has done what she was supposed to for them without taking over the Lord’s part. “Which part is mine? and which part is yours?”

The lesson went on talking about the Lord’s prayer in the garden, when he prayed for the bitter cup to pass from him, but only if it was the Father’s will. And that’s when it occurred to me- maybe I can pray for both what I want, and also for the strength to accept His will if this trial must come to pass and be born. Hope.

Tristan's profile; he's got that Saxton nose!

Tristan's profile; he's got that Saxton nose!

After the lesson, when the opportunity was given, I knew I needed to stand and bare my testimony. I was already so emotional, I had no intention of talking about our situation with Tristan. I just wanted to reaffirm, mostly for myself, my testimony of forever families and temple sealings. I did end up sharing Tristan’s condition though. I thought it would be easier in that setting instead of telling people over and over again as they have been asking me about the gender and the due date and all of the standard questions a pregnant belly begs.

I always wonder when people ask the innocent question “How are you?”, how I should respond. Truthfully, most of the time I am really doing well- but if the person asking knows of the situation, and I do not know that they know, it can be an awkward start to the conversation- “How are you doing?” “You know, I am pretty great today,” and then their skeptical response “Really? Are you sure?” I have found it hard not to read too much into anyone asking me “How are you doing?” There have been a few times I assumed they had been told by someone, just by the tone in their voice, when they had no clue and I kind of just dumped it all on them.

Then there is the other extreme. The people who ask innocent questions and have no clue- and I know they have no clue. I am always at a loss for what to say and usually what I say has no resemblance to what I am thinking! “So when are you due? What are you having?” people ask excitedly. I try to smile, wondering how far this is going to go. I respond “It’s a little boy and he is due in October.” I would smile and be on my way if that were the end of the conversation, but usually it is continued with “Oh, your first boy! you must be so excited, after having 2 girls. This will be a whole new experience!” You have no idea! I am thinking. Usually I am wondering whether to tell the person at this point, to avoid awkward future meetings, or try and slip out with my thoughts about dreading October more than being excited for it, and the fact that after October we will probably be back at the score of girls-2,  boys-0 for the Neil Wyatt family, still in my head.

Anyway, if you are one of the unfortunate people I have had any of these conversations with, just know that I am not blaming you for anything. It’s just one of those bad luck situations.

I don’t expect people to know what to say to me. I am one to try and avoid a person for some time after I learn about a tragic situation they are dealing with. I am always afraid of saying something wrong or being awkward. But through this I have learned that the best response is usually a sincere, “I am sorry.” Offers of service are great, too, if you are really willing and able to help out, but don’t say it unless you mean it. Be careful with “been there, done that,” stories. Some people find it comforting to know that others have come through a difficult situation, but other times it can be taken as a message to “Get over it,” or “don’t take it so hard- bad things happen to everyone,” even if that is not how you mean it.

What do you think? In your times of need what has been most helpful to you? How do you respond to someone when you unexpectedly learn they are going through a sensitive time?