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All together at last

All together at last

At 12:42 p.m. on October 12th, our little miracle came into the world. His dark hair was so evident that before Dr. Clark cut the amniotic sac she could see it and called Neil over to look. He then had the privilege of cutting the cord, and I listened intently for the sound of Tristan’s little cry. Please baby, cry! I thought over and over. Finally it came and i had tears in my eyes I was trying to blink away so that I could see my baby clearly when Dr. Clark held him up over the blue drape for me. They quickly took his heart rate, wrapped him in a blanket and without the usual rituals of weighing and measuring, handed him to Neil.  Neil brought him around to my head and sat there with me holding Tristan’s head against my cheek as they sewed me back up. It seemed to take forever. The nurse told us his heart rate was low and we could tell his color was not good. I was scared that we weren’t going to make it out of the OR with Tristan alive. At last they took  the curtain down and wheeled us back to the L & D room where everyone was waiting.

Sucking his fingers

Sucking his fingers

When the nurses finished hooking me up to all the monitors, Neil handed me Tristan and I held him for the first time. I was amazed at this little person with dark curly hair and dark eyes and just kept wondering how long he would stay with us. McKenna and Adele both got up on the bed with me and took turns admiring their brother.

McKenna was SO anxious to hold him and I was completely shocked by Adele’s reaction. Lately she has been so jealous of any other child that gets near me. McKenna often gets hit, pinched, or hair pulled if Adele doesn’t like her proximity to me! But as she looked at Tristan, she just got excited and kept saying “Baby!” She didn’t try to get him away from me or anything.

After I had the chance to hold him for a while, Neil took him and announced that he was ready to give him a name and a blessing (kind of  what other churches call a christening). The blessing Neil gave was beautiful and left little doubt to anyone what a special spirit this baby was. It was amazing because after the blessing Tristan pinked up quite a bit and his breathing seemed to improve as well. Nurses doing my vitals also checked Tristan’s heart rate at our request and this too had improved to a normal range.

Proud parents

Proud parents

At this point we started passing Tristan around, and almost everyone got the chance to hold him. That’s saying a lot- there were aunts, uncles, grandmas, grandpas, cousins, and many close friends. So many teary eyes. The photographer from “Now I Lay Me Down To Sleep” was there. She got a family photo of Tristan with Neil and me and the girls. She also took many other shots and I am so excited to see how they turned out. We never really got a break but Neil and I had both thought that this day would be for everyone who wanted, to be able to meet Tristan.

So later that evening, Julie, our NILMDTS photographer came back to get some shots of us after I had recovered a bit. So many pictures that I know I will treasure. THANK YOU SO MUCH JULIE!

McKenna loves Tristan

McKenna loves Tristan

Adele loves Tristan

Adele loves Tristan

We moved to a tiny gloomy room out of the maternity ward. When we were moved, the nurse over there informed us that they did not have diapers or formula so we would have to get our own if we needed them. Yeah, I’ll just run to Smith’s and pick those up! They had no idea what to do with Tristan. While the nurse was doing my vitals, I asked if she could take Tristan’s heart rate and said she needed to talk to the pediatrician about what they could do for Tristan, first. It was like he was no longer a patient at all!

When Beth and Joan came over from Rainbow Kids, Beth stepped out to talk to the nursing director. She got us moved to a big bright room in the new maternity ward. Apparently, somewhere along the line the message was passed along that we didn’t want anything done for Tristan and that we would feel better not being around the well babies. THANK YOU BETH for straightening out that misunderstanding!

Visitors continued into the late evening and we asked the last of the visitors to leave at 10. The nurse came to take my vitals and Tristan’s heart rate. 110- still in normal range. Neil and I took turns holding him and by 10:30 I was dozing with Tristan cuddled up on  my chest. I woke up to admire him and see if Neil wanted another turn. We talked about how we didn’t want to go to sleep, we didn’t want to miss out on any time we could have with Tristan.

At this point Tristan started crying.  I tried breastfeeding him- for the umpteenth time- just in case he might want it. No luck. Tried the bottle and he didn’t want that. Neil changed him and he was messy but he continued to cry. After everything we could think of, he still cried. I actually enjoyed the sound and told Neil that it was probably a good thing. From what I understood, he would probably be too weak towards the end to be able to cry. We got out the video camera and recorded his voice. Then the crying stopped and he only made a few newborn noises as I curled him up with his head of soft hair under my chin.

Our beautiful boy

Our beautiful boy

I started to doze as the nurse came back in to take my vitals. She then helped me to unwrap Tristan to take his heart rate. She listened and adjusted her stethoscope and listened again. He’s gone… she can’t find his heart beat. But I didn’t want to believe it and neither did she. She readjusted and listened again. I whispered for Neil who was on the computer and didn’t know what was going on yet. The nurse went to get the pediatrician.

I looked at the clock. 11:25. We had been counting the hours of his life.  More than we expected but what never could have been enough time. Here it was- 18 minutes short of 11 whole hours- the entire lifetime of our son, Tristan Neil Wyatt.

This is probably my favorite so far, despite the stethoscope being in the shot. I love his soft expression and open eyes.

This is probably my favorite so far, despite the stethoscope being in the shot. I love his open eyes.

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?

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

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.