Troy and Alie

   Finally one day I went to my OB appointment and he did an ultrasound to see if the baby had turned. I was 39 weeks, the baby was breech and I was not progressing. I didn't want to do this any more.  He told me he would induce me Monday and I cried. It was thursday. At that point every day felt like a month. He sent me home.
       By this time I was mad at the world and at God. We wanted this baby. We loved and prepared for this baby. How could He do this to us? Why? Can I tell you… I still don't know. Part of me is still mad.
    The next morning was  a normal morning but then my OB called. He wanted me to come in and we would try to turn the baby and see if that stimulated contractions. Again we dropped of the kids and went to the hospital. Everyone there seemed to be informed of our situation and we were greeted with kindness and pitying looks.
    They hooked me up to monitors. We signed papers. We waited. Our doctor came in with a nurse and  they tried to turn the baby. I'll spare the details, but wow. Ouch. After the two of them forcefully manipulated my stomach for a good ten minutes they were out of breath and the baby didn't turn. Our doctor told us our options: we could wait to see if I went into labor on my own and deliver on my own where he could get stuck because he was breech, cause damage, and be delivered by C-section. We could be induced with much the same outcome; or we could schedule a C-section. Did I mention that our sweet OB was supposed to be on a trip with his wife that weekend? He didn't tell us that, the nurd did. And he was even willing to do the surgery that very day. What an amazing man. We decided that was our best option. We had to wait a few hours, though. We called family. Our favorite nurse came in and answered all my questions about C-sections and reassured us that it was a good choice- she pointed out that the monitors showed I was contracting as it was. We lined up the photographer and everyone we wanted to participate in his blessing as soon as he was born. Then I went into surgery.
       Are c-section babies born purple? Mine was. They laid him on the scale and I looked over at him as I was still strapped to the table and he was all purple and limp, silent and beautiful. We cried. And then, as if by conscious choice, he took a breath. He was still purple. They didn't even bathe him. They just wiped him off, wrapped him up, and handed him to Troy. He took another breath. Troy brought him over to me. I kissed his head and told him I loved him and cried. Troy took him out to meet everyone who was waiting and to give him a name and a blessing while they stitched me up. I threw up. Troy brought him back to be close to me. By now he had more color and was breathing easier.
     When I was sewn up and recovering a sweet photographer came and took pictures of our family. He was still breathing. That whole hospital stay was a whirlwind of visitors who came to see our angel baby. We didn't know how long he would breath for. We opted to give him a feeding tube, as I didn't think it was ok to starve him. They did another MRI and confirmed everything we had been told a month before. Things in his head were not okay but he was breathing. I didn't sleep at all. I didn't put him down either.  The nurse had to double my sleep meds and promise not to take my baby from the room before I would sleep. My amazing mom stayed up most of the night to hold him for me. I just wanted to give him a lifetime of love in whatever short time we had with him.
      There was nothing more the hospital could do for us. They sent us home with supplies to continue feeding him through a tube and a referral for a hospice to come visit us at home. These past three months have been full of so blessings and wonderful people and helping hands we can't possibly express the gratitude we feel for everyone who have helped lift our burdens. We spend our time loving our baby and trying to find a new normal for our family. Our hearts are filled with a mixture of confusion, love, gratitude, and sadness. Our baby is here. Our older boys get to experience life with him and create memories of him.  
     The best term we've been able to find on his condition is lissencephaly 3   which combines all his conditions into one fatal diagnosis. He can't swallow or see. He only responds to loud noises. He doesn't move or wiggle much and barely cries above a squawk.  His body is getting bigger but he is not developing. He spits up his food and chokes and turns blue and scares us to death.  He has such a sweet peaceful presence that we are grateful for every day but it breaks our hearts to not see him progress.
     I've learned so much about love from this experience. We've been loved by so many kind people. We've felt love from our Heavenly Father and we feel so much love for our baby. He will never tell us he loves us, smile at us, or even look at us but I feel so much pure love for him just the way he is; not because of what he'll do or become but because he is mine and his spirit and his body are so precious. I still don't know why we've been asked to go through this or how long we'll have with him. I wonder every day. It consumes me. But everything will be ok. I have faith and hope in my Savior and in knowing that families can be together forever.

Now it was December. We didn't want to travel back to Utah but we made it back to Idaho Falls where we were honestly still hoping for the best that by some miracle they read the MRI wrong and that the real professional had come in and set everybody straight. We had a video conference with another Maternal Fetal Medicine doctor. I will never forget him. He was great. Can I just make an aside here and describe Dr Ball for posterity? He had the most amazing hair: like the most lush silver lawn sticking straight up from his handsome face. His shirt, sweater, tie, and-we found out later when we met him in person-his socks, were loud and strangely coordinated. Though he had no accent we later found out he was raised in Europe which oddly made sense. ANYWAYS… lost my train of thought…
     Back on track with a new paragraph: He had put together everything from the ultrasounds and the MRI and all the things the other doctors had found and gave us a diagnosis. It was not simply hydrocephalous. Our baby's head was normal size. There was no pressure being put on his skull. There was extra water in his head but not because there was any kind of blockage. The fluid was simply taking up space that his small, smooth, deformed brain was not. Even more concerning was his brainstem. It was deformed. Particularly in the part that controls breathing and swallowing. If he could breathe he wouldn't be able to swallow. The only question I remember asking was if we should deliver at the U of U hospital or if we should be closer to home. In his professional and paternal opinion there was no need. There would be nothing they could do for our baby and it would be most beneficial to give birth where we were close to friends and family who could support us and, hopefully, meet him.
   At this point our sweet nurse who we had come to love and who we had come to love and depend of for emotional and medical support said the kindest thing anyone could have said at that point: "Dammit". "Dammit" she said as she cried with us. I've never sworn in my life but "dammit" I said in my head, for once feeling that was appropriate.

    We met with that doctor and our nurse two more times. Once with a neonatologist to discuss what we would do. It was a long meeting and in the end we decided the best option would be comfort care. If he breathed we would give him medication to calm him and relax him, and food to comfort him, but we wouldn't artificially breathe for him. We would deliver in Idaho Falls where they could make him the most comfortable. We met with them again, this time with our parents, which our doctor kindly offered to do, so they could have all their questions answered. By this time we were tired of being the middlemen and trying to explain what was going on. We also talked to a social worker who could line up a photographer, someone to cast his hand and foot, and emotional support.
   At this point I would like to say thank you. With all this going on I know we had so many people praying and fasting for us and it strengthened us. I had priesthood blessings that comforted me and assured me that, though the worry would not go away, everything would be okay.  Thank you for caring and asking us and offering to help and making Christmas special even though we had no money and Troy had been sick and had is own health problems (a whole other blog post).
  We found an OB in Idaho falls we felt comfortable with and I went to his office once a week. He was kind and reassuring and didn't want to cause more complications by inducing me too early and wanted to wait until my body was ready. I cried after every appointment. This pregnancy was getting long and the emotional roller coaster we were on was exhausting. It was at this point that I knew there was so little I could control. I was doing dishes one day and I worked out what I could control and I prayed. I told God that we were in his hands and that the only things I could do were carry this baby to term, nurture him and care for him while he was here, and  love him forever. Those were the only things I could control and I put the rest in His hands.
 

I didn't know if my blog would still be here considering it's been a year and a half since my last post. But here it is. I miss blogging and staying caught up with loved ones far away! But some friends have resurrected their blogs so I hope this will be ok. It's too long and personal for a Facebook post. This has been stewing in my mind for a few days now and since all three boys are asleep and I got a new cord so I can charge my laptop I figured now would be a good time. I don't guarantee there will be more posts but we'll see. Now prepare for lots of words, pointless details and some spelling and grammatical errors thrown in for effect:
   I'm sitting here listening to my baby breathe in his sleep. It's easier when he's asleep but I can still hear him two rooms away. It takes all the little muscles in his chest to keep his lungs going and the tube down his nose collects mucus and the rattle of it in his throat adds to the noise. Sometimes, if I put him in his swing at night the force of his breath rattles the swing. But he's here. He's three months old and he's perfect in my eyes.
   As I watch him sleep I think back to the long road that started last september, trying to process all we've been through. It started at our 20 week ultrasound. After a miscarriage 6 months earlier, I was excited and anxious to finally find out the gender of our baby. I think it's the best part of being pregnant. Our doctor outsourced the ultrasound to a  radiology clinic near his office. The technician was a younger woman who tilted her head thoughtfully but at extreme angles as she measured the baby's various parts. I don't know why I remember her head tilt. At the end she told us the baby was at an odd angle and couldn't get a gender and that she wanted to get a radiologist to do some more measurements. This was our first time at this particular place so we didn't know this was abnormal. An older man came and did some measurements, sat back in his chair and told us our baby appeared to have some brain issues and we should be prepared to miscarry. We were shocked. We didn't know what to ask. I asked if he knew the babies gender, figuring we should at least have a name picked out for the headstone and he looked at me like I was crazy.
       On the car ride home I texted my Dr and he told us to come in right away. We were in his office a half hour later and he gave us some speech about how we live in a fallen mortal world and these things happen but he  pulled some strings and got us into the neonatologist the next morning and offered me some medication to help me sleep. We were so grateful for him for taking immediate action. I don't think we did sleep much that night but I remember laying in bed, feeling him move, and thinking "but this baby is so alive how can we miscarry now?"
   The next morning we were anxious as we drove 45 minutes to the hospital in Idaho falls. The nurses were so nice to us and made us feel like they would take care of us and they did. They have a more powerful ultrasound machine there and the pictures they took showed us it wasn't what we originally thought but there was some hydrocephalus (water on the brain) that they would monitor and they would run some blood work to see if they could tell anything from chromosomal testing and we were having another boy who looked just like his two brothers did in their ultrasound pictures with pouchy lips and everything! Everything they measured in his tiny body normal except his head, which wasn't really too large just had too much fluid.
      We went back again two more times, they did more ultrasounds and found the same things and that he was growing and the chromosomal tests all came back negative.  We even went out to lunch after one appointment to a restaurant we couldn't afford to celebrate the good news. After these findings they  made an appointment for us at the U of U hospital to see if he was a good candidate for a shunt surgery after he was born. We talked about delivering there depending on their findings so we would be right where we needed to be and they could do the surgery as soon as possible for the best results.
     Two days before Thanksgiving we dropped the boys off at my in-laws and drove down to Utah where we stayed with my best friend from high school. We had a lovely time catching up. The next morning we left early for the hospital which was good because we are both directionally challenged and of the three GPS systems we had, three didn't work. Eventually we made it there frustrated and late but it didn't matter because the MRI office was running behind schedule. I changed into MRI machine appropriate clothing (so comfortable and so dowdy) and we waited and waited. When it was my turn they propped up my 7 month pregnant body with pillows so I would be in the right position for the screening. I remember when they turned on the machine the loud noise made the sleeping baby inside me jump. Half hour later we were done. They said that though screening babies was tricky, they had gotten some good info.
   More waiting, a bit of lunch, a different floor, and more waiting later we were sitting in another ultrasound room. More waiting, more nurses, more questions later we were in a small conference room. It was about 5:00. We had been in the hospital since 10:00 that morning. We were tired and frustrated and ready to go home and get ready for Thanksgiving the next day.
    A young female resident came in finally and started asking us more of the same questions we'd been answering that day: did I smoke? was I on any medications? did I take folate? prenatals? etc etc but she seemed almost confused by our answers. Then a Doctor, I think a maternal fetal medicine Dr, came in. This was the first Doctor we had seen all day and we were ready for some answers; ready for some good news.
   He was a fatherly figure but not too old. He asked us the same questions the resident had just asked us and then asked us if we had a good support system (we do!). He told us our baby was not a good candidate for shunt surgery because things looked bad inside our little baby's head. The fetal MRI specialist was gone for the holiday but soon they would have everything put together for us. He gently suggested that, if that was the way we swung, abortion was an option but he would not be able to do it because of his beliefs (he was LDS, as are we). No. We said no. That was not an option for us either.
   It was past 7:00 and we were four hours from home. We called my sweet mother-in-law and she said she could watch the boys another night. We texted our kind bishop. We needed prayers. I cried three-quarters of the way home until I fell asleep. We got home and unloaded. I cried myself to sleep and then I cried myself awake the next morning. Someone brought us thanksgiving dinner and I cried. We went to dinner at the Parsons and I tried to explain what little we knew. We ate and then I found a corner bedroom and cried myself to sleep again.

Believe it or not I have tried a few times to update this blog only to wait for hours to upload pictures and then lose them. I can't begin to catch up but I will say that since the last post we have-- cleaned up the yard (including recycling 11/2 tons of metal we found back there); been on a cruise; been to family reunions- including Yellowstone Park and Island Park; celebrated the fourth of July, our 6th wedding anniversary, my 26th birthday, a new full-time-better-paying-much-harder job, and the 10-year anniversary of our first date. That  about brings us about up to date: