After Levi was moved to the NICU I was trying to convince myself "everything is going to be okay." It had to be.
Nate went down to see what was going on and the baby was under a warmer. The doctor said they were just going to keep an eye on him. Meanwhile I was stuck in a bed hardly able to move. As soon as I felt able to, I asked to be wheeled down to see and hold the baby. They'd placed an IV in him and he was hooked up to all kinds of wires and cords. Seeing my baby, the baby who'd just spent 9 months in my tummy, all hooked up like that, was one of the saddest moments of my life. By about 6 or 7 pm the doctor in charge of the ICN at our hospital said he wanted to have him transported to UCSF to undergo testing. Panic. Testing for what?? They said he had low muscle tone and a few other issues presenting that should be looked at, and UCSF was the best place for it. The Chaplain at the hospital came and asked if I wanted to talk. By midnight Levi was being baptised by the hospital nun. I held him and cried. The fear inside of me is a feeling I can't even begin to describe.
Throughout the night we waited and waited for the transport team to arrive. Apparently it was a busy night. They finally made it around noon Friday. I was asked to be in my room while they got the baby all set up in the transporter and then they brought him in for me to say good bye before they left for San Francisco. Seeing him get wheeled in, in a huge incubator machine with countless cords and wires, was absolutely devastating.
Nate soon followed to UCSF to find out what was happening. I was taking pain meds and on an emotional roller coaster, still trying to cling to an assumption that everything was going to be fine. Maybe it was just a traumatic birth experience and the baby needed time to adjust. Maybe it was just benign hypotonia - low muscle tone that would eventually go away - as the ICN doctor had mentioned. One of the ICN nurses had taken pictures of Levi to give me before he got transported. I held onto those pictures of my baby and stared and cried. In confusion, panic, fear... hope.
Nate called to give me an update and it was during that call that I heard the words that were going to change my life. Levi had been evaluated by neurologists and geneticists and they wanted to test him for various things, but they specifically wanted to test for something called "Prader Willi Syndrome". Fear. I immediately began scouring the internet. I'd already read somewhat about it the night before when I'd been searching for information on babies with low tone, but I'd also read about cerebral palsy, down syndrome, and muscular dystrophy, among other things. At this point I began thinking maybe Prader Willi Syndrome isn't so bad. It seemed better than some of the other possibilities. But I was sure he didn't have it. He was going to start getting better and have absolutely nothing wrong with him. We'd get released from the hospital in a few days being thankful for our healthy baby and the scare he'd put us through.... Right?
Friday night I was alone in the hospital and called Nate. He said he wanted to be with me and that Levi was in good hands, so he came back up to Santa Rosa to spend the night with me. That night we held each other in the hospital bed and wept together. How could this be happening? Saturday morning came and I began thinking about when I could get out of the hospital to go be with the baby. I asked to be discharged early and eventually got to leave by around 5 pm. We stopped at home to see Norah and pick up some clothing. I walked into Levi's room - his nursery we'd worked so hard on, that I'd obsessed over decorating and making perfect - and fell to my knees and sobbed. Why wasn't he here? Why wasn't I putting him down in his crib? Why isn't any of this happening like it was supposed to?!
Wednesday, September 28, 2011
Thursday, September 1, 2011
The birth story
We weren't trying for baby #2, but we weren't doing anything to prevent it. We had actually just started discussing the timing on when we would start putting a little effort into making it happen. And then wouldn't you know...! Baby #2 was on the way, due July 20, 2011. We were somewhat surprised that it happened so effortlessly but we embraced it and were very excited for the new addition to our family. The timing actually seemed "perfect." It seemed this baby was meant to be and we felt very blessed.
A relatively normal pregnancy transpired, going by fast as we were busy taking care of baby #1. At a doctor's appointment at the beginning of June, about 33 weeks, I was having strong rhythmic contractions. Next thing I knew I was admitted to the hospital for possible pre-term labor. We were scared about a too early arrival but with the help of medications baby stayed put and I was released the next day with orders to come back in a few days for monitoring. At that next appointment, I was hooked up for a non-stress test and baby didn't pass. His heart rate didn't accelerate like it was supposed to. So I was then sent for a biophysical profile (BPP) ultrasound, and it turned out everything looked fine. But I had to go back again in a few days to try the non-stress test again. This is when the worry set in. For the rest of the pregnancy I was going in and failing non-stress tests but always passing the biophysical. The hospital staff assured me as long as the BPP looked good everything was fine. I spent hours hooked up to those non-stress test fetal monitors, worrying. Why isn't he moving like he's supposed to? I could certainly feel him moving around. The BPP gave us a sense of "everything is fine" but I still worried. Finally delivery day rolled around. We were nervous for the c-section; it felt so weird to have a scheduled c-section. Driving to the hospital I remember saying, "I hope there's nothing wrong with him" as I had many times in the recent weeks thanks to all those failed non-stress tests. We just chocked it up to typical expectant parent nerves and assumed everything was going to be fine, just like it had been with our daughter. During the surgery, it seemed to be taking a while. When the doctor said she needed a vacuum assist because he had a big head, I was nervous, thinking it was going to be a huge baby! Then she pulled him out and I was anxiously awaiting his cry. I'd been excited to hear that cry for 9 months and in the days leading up to his birthday, kept thinking, I can't wait to hear him cry so I know everything is okay. But he cried only briefly and not very loudly, and then just a lot of whimpering. I was officially worried, and now began anxiously awaiting his Apgar score. I was stitched up while Nate and the baby went for the newborn testing and typical clean up process. After sitting in the recovery room for a while I finally buzzed the nurse and asked her to find out what was taking so long. I wanted to be with my baby! Nate and Levi showed up shortly after and I finally got to hold the little guy who had been causing me so much worry. He was all bundled up and sleepy, like a perfect beautiful newborn baby. We snuggled and took a couple pictures and I sent out a text message announcing his arrival and birth details: 12:05 pm, 7 lbs 6 oz and 19 inches (not nearly as big as I'd expected/feared! A doctor came in to check on him again saying he had been a little blue so he wanted to take another look at him. I asked his Apgar and they said it was a 7 which was okay. The doc said he looked good and handed him back over to me. Then I decided I wanted to get him started on breast feeding. I unwrapped him and put him to the breast. He was sound asleep and wasnt even opening his mouth. I decided to just hold him for a few minutes and then tried again. The nurse popped in and I mentioned he wasn't nursing. She said that was common and to just keep trying. But still he wouldn't open his mouth or even root around. Norah had immediately latched so I wasn't used to this. Then I noticed his legs and feet seemed pretty blue. I told Nate, "get the nurse, something's wrong!" and then Levi was swept off to the nursery. That's when our birth story ends and a whole other story begins.
A relatively normal pregnancy transpired, going by fast as we were busy taking care of baby #1. At a doctor's appointment at the beginning of June, about 33 weeks, I was having strong rhythmic contractions. Next thing I knew I was admitted to the hospital for possible pre-term labor. We were scared about a too early arrival but with the help of medications baby stayed put and I was released the next day with orders to come back in a few days for monitoring. At that next appointment, I was hooked up for a non-stress test and baby didn't pass. His heart rate didn't accelerate like it was supposed to. So I was then sent for a biophysical profile (BPP) ultrasound, and it turned out everything looked fine. But I had to go back again in a few days to try the non-stress test again. This is when the worry set in. For the rest of the pregnancy I was going in and failing non-stress tests but always passing the biophysical. The hospital staff assured me as long as the BPP looked good everything was fine. I spent hours hooked up to those non-stress test fetal monitors, worrying. Why isn't he moving like he's supposed to? I could certainly feel him moving around. The BPP gave us a sense of "everything is fine" but I still worried. Finally delivery day rolled around. We were nervous for the c-section; it felt so weird to have a scheduled c-section. Driving to the hospital I remember saying, "I hope there's nothing wrong with him" as I had many times in the recent weeks thanks to all those failed non-stress tests. We just chocked it up to typical expectant parent nerves and assumed everything was going to be fine, just like it had been with our daughter. During the surgery, it seemed to be taking a while. When the doctor said she needed a vacuum assist because he had a big head, I was nervous, thinking it was going to be a huge baby! Then she pulled him out and I was anxiously awaiting his cry. I'd been excited to hear that cry for 9 months and in the days leading up to his birthday, kept thinking, I can't wait to hear him cry so I know everything is okay. But he cried only briefly and not very loudly, and then just a lot of whimpering. I was officially worried, and now began anxiously awaiting his Apgar score. I was stitched up while Nate and the baby went for the newborn testing and typical clean up process. After sitting in the recovery room for a while I finally buzzed the nurse and asked her to find out what was taking so long. I wanted to be with my baby! Nate and Levi showed up shortly after and I finally got to hold the little guy who had been causing me so much worry. He was all bundled up and sleepy, like a perfect beautiful newborn baby. We snuggled and took a couple pictures and I sent out a text message announcing his arrival and birth details: 12:05 pm, 7 lbs 6 oz and 19 inches (not nearly as big as I'd expected/feared! A doctor came in to check on him again saying he had been a little blue so he wanted to take another look at him. I asked his Apgar and they said it was a 7 which was okay. The doc said he looked good and handed him back over to me. Then I decided I wanted to get him started on breast feeding. I unwrapped him and put him to the breast. He was sound asleep and wasnt even opening his mouth. I decided to just hold him for a few minutes and then tried again. The nurse popped in and I mentioned he wasn't nursing. She said that was common and to just keep trying. But still he wouldn't open his mouth or even root around. Norah had immediately latched so I wasn't used to this. Then I noticed his legs and feet seemed pretty blue. I told Nate, "get the nurse, something's wrong!" and then Levi was swept off to the nursery. That's when our birth story ends and a whole other story begins.
The beginning
I am jumping on the blog-wagon... More for myself than for an "audience" but I realize there may be readers so I will try to keep it interesting. Mostly I just want a place to track my family's journey to a fuller life. And this is the beginning.
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