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I said, last time, that I believe God could fix this, but that he probably won’t. I think everyone has their trials to bare and that our Father in Heaven is always there for us, mindful of every sparrow that falls. He cries with us, comforts us, and carries us when we can’t go on. But He sent us here to gain experience and if He were to take away the pains of living in a fallen world, our growth would be stunted and our lives on Earth would serve very little purpose.

I am grateful for all of the prayers and thoughts being sent our way. They have provided me with much peace at times I would have expected to fall apart. And I have been given insight that helps me prepare for the worst, constructively, while hoping for the best. I say this in prelude to what I am about to say, so that if you disagree, you might see where I am coming from.

The phrase I seem to get the most lately is “Miracles happen,” or some variation on the theme. I do not discredit this. I know God shows his hand in mighty miracles even today, as in the times of Christ’s ministry. I have seen mighty, yet quiet miracles in my own life. But, as I told my crying mother as we talked about this, sometimes the miracle we get is not the one we would have chosen for ourselves.

The first time this really hit me hard, I was talking to Neil about the situation and he brought up the fact that a friend of our friends had a similar experience to ours and wanted to let us know that we could talk to them if we desired to do so. At this point, I had been bombarded with many such comments about people who had “the same thing” happen and everything turned out just fine. So I asked Neil, with hidden sarcasm, if everything with them had “turned out just fine”. He replied quietly, “No, the baby died.” I could not say anything. I was so taken aback. Shocked. Our baby could die. And Neil wasn’t telling me everything would be ok.

The next day I could barely function. I broke down in my morning shower, sobbing where no one could hear me above the din of the falling water; cradling my round belly, wondering how I could get through the next 3 months facing the possibility of losing Tristan. All day, I was bitter and angry and on the verge of tears. That night I tried to sleep. I finally hit the sheets for good at 2:30. Did not start drifting off until Neil’s alarm went off at 5 a.m. I functioned the next day on 3.5 hours of sleep, but refused to nap so I might sleep that night. I did sleep from about 10 until 3:30.

At 3:30 I woke up with thoughts buzzing around my head like pesky flies. As I lay there a song came into my mind that I had been listening to the day before. I had been listening to a Mormon Tabernacle Choir cd to calm my troubled mind, and now the beautiful “Ooo”ing of the chorus filled my head. The only words to the hymn that I could think of were these: “Ponder anew, what the Almighty can do…”

I will just finish the story with what I wrote in my journal.

” ‘Ponder anew, what the Almighty can do…’ I keep going over this simple phrase. Yet I feel strongly that this physical challenge is not going to be prayed away this time. I know that Heavenly Father could heal this baby’s little heart, but I am not sure that is His will concerning this. So I have been pondering on whether these words keep coming to me because this conclusion I have made about God’s will is a lack of faith on my part. Then it occurs to me that these words aren’t about the physical. The savior wrought many miracles of physical healing while He was here on Earth and continues to do so. But the biggest, most important miracle of all, is that He overcame death. He gave us a way to return to Heaven by overcoming physical death, and one step more, He gave us the sealing power so that not only can we return, but we can be with our families there. That is what the Almighty can do.  That is where my faith will be tested. It was a fairly easy thing to say that I wanted a “forever family” and to change my life so that I could marry in the temple. At least much easier than it would be to let my first born son return to Heavenly Father without anger or bitterness on my part; with faith that God will keep His promise to let us be together again, as long as we live for it. I have always said that being married in the temple and having my family sealed to me was the most important thing. But now, can I have faith that there is life beyond this one, that Christ defeated even physical death, and that our son would be waiting for us by Jesus’ side? I really am pondering for the first time, and in tangible terms, what the Almighty can do.”

As an after thought I added this:

“Passover. If only I could paint the door jamb with blood to save our son. It was a simple outward expression of faith; faith in the blood of the lamb to save their first born sons from death. Do I have that faith?”

This is not to say stop praying for us. On the contrary we need all the prayers we can to get through this difficult time. This is only to say that miracles are around us all the time- just not always what we expect them to be.Seattle trip 258

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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.

Our Wyatt FamilyThis is our family. Life is never ordinary or boring. We are always faced with some new adventure, and they just keep getting bigger as we survive the previous obstacle.  I would like to say that this blog will be witty and fun and give you a great laugh. Sometimes it will, but right now I write as an update to our newest challenge in which laughter is hard to come by.

But before I go into the heavy stuff, let me introduce the Wyatt family; Neil and I were married 6 years ago and we are so happy together. I really think we have the best marriage, at this point, of any one I know. Neil is a surgical tech for a dermatologist and I have been able to stay home with our 2 girls since I had our 2nd. I was a CNA and I loved my work on the neurotrauma unit at Primary Children’s Hospital, but love to be home with McKenna and Adele more.

Despite our interests in medicine, our passions lie in the arts. Neil is a great vocalist and sings tenor in the Mormon Tabernacle Choir. Currently he is preparing for auditions with the Metropolitan Opera. I paint and draw and have done a couple of children’s bedroom murals, of which I am pretty proud. I would love to write and illustrate children’s books someday.

McKenna is our precoscious 4 year old. She is smart gorgeous and sassy and headstrong. She can be very helpful with her little sister… when she is not determined to make Adele scream. Adele is 14 months old. She is a clown and loves to do anything to make you laugh. She has been a fresh breath to our lives. And then there is Tristan. He is our son, expected in October in bittersweet anticipation. He was a surprise, but one we welcome with open arms- if only for a few short moments of our lengthy lives. You see, Tristan has a severe heart defect, in which hope of treatment is dwindling. With each appointment, and new info, the prognosis becomes dimmer. But I will explain more in my next entry. This is the reason I started this blog.