We've received the preliminary results of the amnio and it indicates a trisomy on the 21st chromosome which is consistent with Down Syndrome. The final results rarely deviate from the preliminary results so now we know for sure, Scarlet has Down Syndrome. I'd love to say that I took the news gracefully, chin up but that would be a lie. I cried...a lot. I had any number of selfish, superficial thoughts about what this would mean for Scarlet, for Micha and I and for our family. Micha and I talked about all of the things we were thinking and feeling about this overwhelming news. He has taken the whole situation in stride. I can't imagine going through this with anyone else. By the end of the night, I felt better about what lie ahead for us. As I lay awake in bed, I started thinking about how we will tell Tay the news. I wanted to tailor my message so that it sounded positive while making sure she knew it was ok to feel however she felt about it. As I began to think of the things I might say, I realized I wasn't 'spinning' the news. The words that came to me are what I believe and feel.They sounded something like this: 'At the end of the day, we are still getting to bring home a new baby, a little sister who will still probably want her big sister to paint her nails and play Barbie's and watch princess movies with her. We're lucky because other than the problem with her stomach, she looks healthy and strong.' So strong in fact, she wears me out with all her kicking around! By the next morning, I felt better. As I grieved the picture in my mind of the baby I thought I was having and got used to the new picture that was forming, that feeling of excitement swept away all of the stress and sadness I'd been feeling for weeks.
Micha and I agreed that the worst part of telling people would be some of them feeling sorry for us. Although we know it would come from a place of love, it isn't like the cat died or losing a job or something. Scarlet's birthday will still be a joyous occasion. She's still the product of Micha and I's love and devotion to each other. And while we will certainly face different types of challenges raising her, we know that we have the support of our family and friends. In the meantime, we are redefining what our vision of our 'perfect' family looks like.
Friday, June 14, 2013
Thursday, June 6, 2013
When 'Perfect' Isn't (part 2)
The morning of the appointment with the specialist. I don't think it's a coincidence that
the song I wake to is Just Breathe by Pearl Jam. It's a song that is
special to me for a number of reasons. It calms me despite it's quick
tempo, dramatic swells and sometimes somber sentiments. I'd hoped it was
a good sign. I worked until 12:30 and then Micha came to take me to the
appointment with the genetic counselor and neonatologist.. We first spoke with the genetics counselor who took our
family history and explained that, in fact, the ultrasounds from our
doctor's office indicated multiple soft markers for Down Syndrome or
another chromosomal abnormality. In addition to the asymmetrical
ventricles, Scarlet is missing her nasal bone, shows a thickened nuchial
fold and a 'double bubble'. Our doctor had never mentioned the other
markers, only the asymmetrical ventricles. We were taken totally by
surprise. After we visited with the genetic counselor we were taken in
for the ultrasound. The doctor confirmed all of the markers and also
noted that one of Scarlet's long bones measured short. She also
explained the the 'double bubble' or duodenal atresia would need to be
corrected surgically before Scarlet would be able to eat. She talked to
us about the amniocentesis versus the blood draw to determine whether
or not it was in fact Down Syndrome and gave us a few moments to talk
and decide what we wanted to do.
I'd already been fighting back tears during the ultrasound. Micha held my hand and at one point I could feel his hand starting to shake and I knew that he was feeling what I was. Hope was slipping away. We'd walked into that appointment really feeling that Dr. McFarlane was just being overly cautious, that this was a big deal over a small thing that would probably correct itself in utero or shortly after birth. And even if it didn't, the doctors would place a shunt and viola, problem solved. But as the doctor confirmed each of the markers, we realized at the very least our baby would need surgery within days of being born and that she probably had Down Syndrome. We decided to get the amnio since a diagnosis of Down Syndrome would affect her surgical plan. I listened to a guided relaxation MP3 on my phone during the procedure. It hurt no more than getting a shot would and it didn't matter anyway. The worst of the pain was in my heart. Micha drove me home where more bad news was waiting for us. Because I have a high deductible insurance plan and we'd been using our savings to make ends meet since Micha's unemployment began, I applied for medical assistance through the state of Kansas. Hoping for one piece of good news on an otherwise crappy day, I opened what I had hoped were approval letters. Instead, I found that the state had denied our application for medical assistance. I started to cry, sobbing really, so loudly I thought the neighbors might hear.
Once I stopped crying, I became angry. Really angry. I had no doubt that God existed but He was a bastard and he could go pound salt. I'd lost everything once already. I wasn't doing it again so what ever lesson He was trying to teach me, He better figure out another way. I wasn't blaming Him for Micha losing his job or for the state denying our coverage, but the baby, that was different. He had control there. He could've given us a healthy baby. There are idiots getting pregnant all the time that don't even want their children, that drink and do drugs and their babies are ok. I, we, wanted this baby and I took care of myself and avoided anything that might be harmful. Micha tried his best to comfort me, and at one point I think he'd bowed his head and closed his eyes in prayer. I wanted to tell him 'Stop it. I've been doing that for months now and He isn't listening so don't waste your breath.' but I didn't. Micha had just as much right to do whatever might make him feel better as I did. He chose prayer. I threw a grand tantrum, complete with swearing, smashing stuff and punching inanimate objects....in my mind. The most I could muster in reality was throwing my tissue and sobbing loudly. Then came the guilt. I momentarily forgot everything I learned in Genetics and started asking myself 'what if this was something I'd done?' We hadn't really been trying to get pregnant again, at least not yet, and it was close to the holidays so I know there were a couple occasions when I drank before we knew I was pregnant. What if it was my hypothyroidism? I tried to be good about taking my medication but I've never been good about taking pills. Maybe it really was my age. Had I been so selfish in wanting another child that I ignored the odds? I haven't gone to church, or prayed or helped the poor as much as I should've. I'd been blessed and fell short on promises I'd made to be a better person.
Over the next few days, I came to grips with the probability that Scarlet was going to be diagnosed with Down Syndrome. Even though the genetic counselor told us that there was still only a 20-30% chance, I'd had enough false hope in the last 4 weeks. I didn't know anything about raising a child with Down Syndrome. And what about our other children? A new baby takes so much attention, how would we make sure they still got the attention they needed? And that wasn't even the most immediate concern. I worried about making it full-term, as duodenal atresia has caused hydramnios (excess amniotic fluid) which can cause pre-term labor. I also worry about her having such a traumatic first few days. As I understand it, she'll have to be in NICU for a couple days before she has surgery and then she'll have to stay until she can eat all on her own. It bothers me that she won't just get to be with us the way Charlie and Tay were. I think about her having tubes to keep her stomach empty and being hooked to machines. How will I comfort her if I can't nurse her? Will she feel hungry? I worry what not being able to nurse right away will mean for our breastfeeding relationship. I tell Scarlet that her first few days Earth-side might be scary so take as long as she needs to cook. I'll do my best to help her through the first week or so until she can come home and then her Dad and I would do everything we can to show her how not scary the world can be. I also resolved some of my anger at God. I realized that probably none of this is about me, the life I've led or how 'good' or 'bad' a Christian I've been. I can't say I'm 100% over it, but I know that this baby will be no less a blessing for us than our other children.
I'd already been fighting back tears during the ultrasound. Micha held my hand and at one point I could feel his hand starting to shake and I knew that he was feeling what I was. Hope was slipping away. We'd walked into that appointment really feeling that Dr. McFarlane was just being overly cautious, that this was a big deal over a small thing that would probably correct itself in utero or shortly after birth. And even if it didn't, the doctors would place a shunt and viola, problem solved. But as the doctor confirmed each of the markers, we realized at the very least our baby would need surgery within days of being born and that she probably had Down Syndrome. We decided to get the amnio since a diagnosis of Down Syndrome would affect her surgical plan. I listened to a guided relaxation MP3 on my phone during the procedure. It hurt no more than getting a shot would and it didn't matter anyway. The worst of the pain was in my heart. Micha drove me home where more bad news was waiting for us. Because I have a high deductible insurance plan and we'd been using our savings to make ends meet since Micha's unemployment began, I applied for medical assistance through the state of Kansas. Hoping for one piece of good news on an otherwise crappy day, I opened what I had hoped were approval letters. Instead, I found that the state had denied our application for medical assistance. I started to cry, sobbing really, so loudly I thought the neighbors might hear.
Once I stopped crying, I became angry. Really angry. I had no doubt that God existed but He was a bastard and he could go pound salt. I'd lost everything once already. I wasn't doing it again so what ever lesson He was trying to teach me, He better figure out another way. I wasn't blaming Him for Micha losing his job or for the state denying our coverage, but the baby, that was different. He had control there. He could've given us a healthy baby. There are idiots getting pregnant all the time that don't even want their children, that drink and do drugs and their babies are ok. I, we, wanted this baby and I took care of myself and avoided anything that might be harmful. Micha tried his best to comfort me, and at one point I think he'd bowed his head and closed his eyes in prayer. I wanted to tell him 'Stop it. I've been doing that for months now and He isn't listening so don't waste your breath.' but I didn't. Micha had just as much right to do whatever might make him feel better as I did. He chose prayer. I threw a grand tantrum, complete with swearing, smashing stuff and punching inanimate objects....in my mind. The most I could muster in reality was throwing my tissue and sobbing loudly. Then came the guilt. I momentarily forgot everything I learned in Genetics and started asking myself 'what if this was something I'd done?' We hadn't really been trying to get pregnant again, at least not yet, and it was close to the holidays so I know there were a couple occasions when I drank before we knew I was pregnant. What if it was my hypothyroidism? I tried to be good about taking my medication but I've never been good about taking pills. Maybe it really was my age. Had I been so selfish in wanting another child that I ignored the odds? I haven't gone to church, or prayed or helped the poor as much as I should've. I'd been blessed and fell short on promises I'd made to be a better person.
Over the next few days, I came to grips with the probability that Scarlet was going to be diagnosed with Down Syndrome. Even though the genetic counselor told us that there was still only a 20-30% chance, I'd had enough false hope in the last 4 weeks. I didn't know anything about raising a child with Down Syndrome. And what about our other children? A new baby takes so much attention, how would we make sure they still got the attention they needed? And that wasn't even the most immediate concern. I worried about making it full-term, as duodenal atresia has caused hydramnios (excess amniotic fluid) which can cause pre-term labor. I also worry about her having such a traumatic first few days. As I understand it, she'll have to be in NICU for a couple days before she has surgery and then she'll have to stay until she can eat all on her own. It bothers me that she won't just get to be with us the way Charlie and Tay were. I think about her having tubes to keep her stomach empty and being hooked to machines. How will I comfort her if I can't nurse her? Will she feel hungry? I worry what not being able to nurse right away will mean for our breastfeeding relationship. I tell Scarlet that her first few days Earth-side might be scary so take as long as she needs to cook. I'll do my best to help her through the first week or so until she can come home and then her Dad and I would do everything we can to show her how not scary the world can be. I also resolved some of my anger at God. I realized that probably none of this is about me, the life I've led or how 'good' or 'bad' a Christian I've been. I can't say I'm 100% over it, but I know that this baby will be no less a blessing for us than our other children.
Subscribe to:
Posts (Atom)