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.
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