Friday, December 20, 2013

Scarlet Rose's Birth Story

Scarlet is almost 5 months old now, so I suppose it's high time I write her birth story.

It had been weeks since I'd had a decent night of sleep. My belly was enormous and made it impossible to get comfortable. Most nights I had such bad heart burn I couldn't lay down and I was up to the bathroom no less than 5 times a night. Still, no matter how miserable I felt, I refused to wish she come early. Through sheer force of will, I was going to keep her safe inside me until it was her time. Scarlet had other ideas. It was early the morning of August 7th. I was already awake but there was a terrible storm blowing through. The thunder was so loud it shook the whole house and woke Charlie. Scared, he came to our bedroom and climbed into bed with us but he was restless. I couldn't get him back to sleep and I was beginning to get really uncomfortable. A steady tension had taken over my belly and made it even more difficult to get comfortable. The tension persisted so long, I began to worry something was wrong. When it was time for Micha to start getting up to get ready for work, I told him I thought I was in labor. I was only 35 weeks, I didn't even have a bag packed. We called my Mom, our doctor and I showered and threw some things in a bag. Micha had to go into work. We had no idea whether they would allow him to take off to be with me as he was still in training. Our neighbor took me to the hospital. Micha finally got a hold of someone who could approve him taking off so he met us there.

When we arrived at the hospital, I wasn't sure what would happen. I wasn't even entirely certain I was in labor. I kept saying "I'm going to feel real dumb if I'm not. This is my 3rd time and I still haven't got it figured out!" If it was true labor, I thought they might try to stop it. They admitted me and hooked me to the monitors and confirmed I was in fact in labor. The nurse wanted me to stay in a reclined seated position, hooked to the monitor until Dr. McFarlane arrived and decided whether we'd proceed or try to halt labor. I remembered how hard it was for me to communicate what I needed or wanted during my labor with Charlie. I repeated "I can't stay like this" until the nurse agreed to let me sit up more. The doctor arrived and said it probably wouldn't do much good to try and stop things at this point. Our nurse remarked that I must have some power over the notoriously controlling Dr. McFarlane. I told her that had never been our experience with him, in fact that was why I'd chosen him again. I'd even considered a home birth but he was so cool with Charlie, we went back to him. I spent the majority of the rest of my labor in the giant tub in our birthing suite. My Mom arrived. I was not hooked to a monitor again nor was I "checked" again until it was time to break my water. The hospital called a neonatalogist to come and arrangements were made for the transport team to come and take Scarlet to Children's Mercy as soon as she was stable.

Dr McFarlane thought things would progress faster if he tried to release my water. What was supposed to be a small leak turned into a flash flood. I had hydramnios which was why my belly was so huge. Now there was so much fluid coming out at each contraction, a janitor had to be called into mop the floor. Transition came on quickly and I'm not ashamed to say, I am a yeller. I had been moaning through the contractions in an effort to keep my jaw from tightening but as the contractions became more intense, the moaning got louder and grew to yelling. I remember distinctly telling my mother she was crazy. I also remember wanting to not swear and mar an otherwise beautiful event. I didn't want to, but I did. I was having trouble saying the things I really wanted to say like "I need to move" came out "I can't do this". I felt like sitting was blocking her path but I couldn't move on my own and I couldn't tell anyone what I wanted. I decided that transition was not working for me and I was going to start pushing whether it was time or not. "I'm done with this" I said. Then I started to feel her moving and she was right there. The doctor wasn't in the room, the janitor was still mopping, my Mom was helping the nurse put pads and towels down. I needed to tell them but I couldn't make my mouth say the words. I pointed but no one understood. I finally blurted out "She's coming!"

The doctor arrived. I remember him saying "Give me 2 seconds, just 2 seconds." I thought to myself, "Are you talking to her or to me? Because she is not listening and I am not in control of this ride, buddy." I was still yelling. My Mom told me to pant. I thought "Panting. Right. I know that. How do I pant? Dogs pant. How do they do that?" I think I even stuck my tongue out. I couldn't make my body do what my Mom was now demanding that I do. "Forget it" I said to myself. You can't hold your breath if your yelling. You can't yell through clenched teeth. The yelling was working for me.  It took no time at all. A couple of pushes and she was out. "I did it!" They tried to put her on my chest but her cord was so short she barely reached. Mom and I decided later, that was why I'd never really felt her drop. It was only a few seconds before the neonatal team took her. They worked on her in the corner of the room while Micha watched over them and my Mom stayed with me. Was her color good? Did she cry? I couldn't tell. It happened too fast and I was so tired. Was she ok? I think they said she was but I couldn't see her. There must have been 8 people in gowns standing over her. I couldn't hear them. I think I started to have a panic attack. It felt like something was squeezing my lungs shut and the harder I tried to fill them, the more it hurt and the tighter they closed up. 

Once I was able to sit up more, it became easier to breath. My Mom and Micha reassured me that Scarlet was ok. How big was she? That was my next worry. She had to be a certain size in order to have her surgery endoscopically, the least invasive way to perform the procedure she needed. I began to shake. No one told me that after natural labor my body would shake uncontrollably. It hadn't happened after Tay and Charlie. I was freezing and shaking for what seemed like an hour. My lips turned blue and I couldn't feel my fingers. Even my Mom got a little worried. They brought me extra blankets and I rolled to my side and finally fell asleep.

After a few minutes, the neonatalogist came in to talk to me about Scarlet. She was a healthy weight, 6 lbs 6 oz and was 19" long. She'd needed oxygen but she was otherwise looking very good. The transport team would get her ready for her trip to Children's Mercy. I was able to rest a little more before my doctor came back to tell me that as long as I was careful and promised to take it easy, he would release me. I could chose to stay overnight or I could go home. The nurse wheeled me to the nursery to see Scarlet off. The transport team moved her into the mobile isolette and went through their check list. I started to cry. All I wanted to do was hold her close to me. To take her home and cuddle her in our bed. It would be 7 long weeks before we would be able to.

Scarlet is most likely our last baby as Micha and I feel our family is complete. I had such a hard time feeling connected to her, even before her diagnosis, but her amazing birth made up for it. We worked perfectly together and from the moment I looked at Scarlet, I knew I needed her as much as she needed me.   

Monday, July 8, 2013

How much IQ can you cram into one room?

We had an echocardiagram at Children's Mercy hospital this morning. The echo looked good. None of the heart defects that are commonly associated with Down Syndrome but we'll have to go back in 4 weeks because little Miss Scarlet kept waiving her hand over her chest, creating a shadow over her heart and in particular the aortic arch. The cardiologist said that even if there is a narrowing in the aorta, it can typically be treated with medication and shouldn't affect her surgery.

We also had our integrated consult with the pediatric surgeon, neonatologist, a social worker, genetic counselor and the lovely LPN who manages to coordinate all of these people. I'm pretty sure the combined IQ in the room was in the thousands. We were super impressed with everyone the pediatric surgeon, Dr. Iqbal, in particular. We got the sense that Dr. Iqbal could perform Scarlet's surgery blind-folded. He even took the time to draw a diagram for Micha, who was having a difficult time picturing exactly what the repair would be. They answered all of our questions about Scarlet's birth, when and how she would need to be transferred and showed us the NICU, where she will stay until she heals from the surgery. They also spoke with us about potentially delivering at Children's Mercy. Let me tell you, if you are going to have a baby who needs emergent care upon birth, Children's Mercy is the place to do it. They essentially have a team of doctors and nurses dedicated to each delivery that hang out in an adjoining room until they are called upon to work their miracles. Ultimately, we decided that while that would be terrific if we really needed it, we'd stick with our original plan to deliver at our hospital with our OB. Being in a separate hospital from Scarlet will be tough, but I believe that ultimately, her outcomes are improved if she can have a non-surgical, unmedicated birth and the best chance of that happening is some place that I'm already comfortable with people I'm comfortable with. Plus, it's a long drive, in traffic, in labor from where we live to Children's Mercy.

Children's Mercy is, in itself, an impressive place. It's obvious they are truly dedicated to the health and comfort of the children in their care.

Friday, June 14, 2013

When 'Perfect' Isn't (part 3)

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.

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 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.

Thursday, May 30, 2013

When 'Perfect' Isn't (part 1)

Another sleepless night. I've had a number of them during this pregnancy. Micha lost his job just a little over a month after we found out we were expecting. Needless to say, worrying about our finances has kept me up a few nights. But last night it wasn't money that was troubling me.

With Charlie I became convinced that my Ob/GYN's favorite word was 'perfect'. Everything was always 'perfect'. Funny word; perfect. I used to hate the word 'perfect' because of all the pressure and preconceived notions that accompany it. Now, I'd give anything to hear it.

Scarlet's first ultrasound was May the 8th. That was the first time Dr. McFarlane didn't say "Everything looks perfect." Instead, he told us that measurements of Scarlett's left and right ventricles of her brain didn't match. He assured us that this was not uncommon and that, often, it resolves itself. He scheduled us for a follow up sonogram 3 weeks later. I was a little uneasy leaving the appointment but Micha reassured me. I forced myself not to Google anything for fear I might find something totally horrifying but Micha did and told me he was even less worried than before.

Three weeks passed and Micha and I went back. While we waited for the results, we joked "What if your doctor entered the room like Cramer? Would you go back to him?" We made bets about whether the hair the sonographer spotted on the ultrasound was red. I was so certain that Dr. McFarlane would come in and tell us that everything looked 'perfect'. But he didn't. He told us that we'd be sent to see a specialist and encouraged us to have an amniocenteses, if that was the recommendation. I was so shocked, I couldn't process what he was saying. I couldn't ask any questions. I just sat there nodding and blinking and trying to breath. As Micha drove me home, I silently screamed at God "I hate you for this" like a petulant teenager.

Truth be told, I've been angry with Him for some time now. I've prayed and prayed about Micha's employment situation. The longer he's gone without a job, the more unfair the whole situation seems. We're grateful for our lives, the blessings in them. We didn't take for granted our children, our home or even our jobs. We didn't deserve this. Was it really too much to ask to just enjoy the excitement of our new baby? Our last baby? And now, this? I am supposed to have normal, healthy, perfect, clinically very boring pregnancies. I am one of those women who could just have my baby in the bathtub at home because I am so low risk. So why is this happening? But as the week went by and I spoke with Micha and my Mom, I became more and more confident that everything was going to be fine.

Thursday, May 23, 2013

Someone stole my ass

A few weeks ago I was fresh out of the shower and slathering moisturizer on when I caught my reflection in the mirror and discovered; someone has stolen my ass. The ass in the mirror was not one I recognized and therefore could not have been mine. I have no idea when the theft occurred because my maternity pants and unders all still fit and my husband still says it looks great. But I am telling you, that ass is not my ass.

With my first pregnancy I stayed ridiculously small. I was 19 and had the metabolism of a rabbit. I didn't even buy maternity clothes because even at 9 months, I could still see my toes.With my second pregnancy, 14 years later I obviously started out weighing more than I had at 19. I ate well and continued to walk and do yoga nearly every evening, so I stayed in relatively good shape. After I had Charlie though, I really fell off working out. With this pregnancy, I've eaten horribly and I've walked or done yoga maybe twice. Sometimes, I suck at life. Luckily, tomorrow is a new day. 

Mover, Shaker and a Dress Maker??

Lying awake at 4am (because that's what time I have to get up to go pee) on March 28th, I got to feel the first flutters of Baby Bear moving. Now if I pay attention after I eat, I can feel him/her kicking around on a pretty regular basis. About a week later, on April 4th, Micha got to feel the baby kick. Pretty good for something about the size of a turnip.

Also, I have a confession to make. I sent the following text to my bestie:

"I hate bitches that look put together at Target. I look like I just came from the gym except instead of glowing and tone, I'm sweaty and giggly. And this bitch has the nerve to come in looking like she just came from her personal stylists house."

Now do I really hate the woman in Target who looks totally cute in a casual and Pinterest-worthy way? No. My actually reaction to seeing her was try and get as far away from her as humanly possible so as not to look even worse by comparison. And it certainly wasn't her fault that unlike me, she took the time to put some effort into her appearance, while I was busy cleaning and trying to get ready for a house full of Easter Sunday guests. I can't really blame my appearance on Easter Sunday or my usual domestic duties or even pregnancy. If I'm being perfectly honest, I've been in a bit of a slump for awhile now. I don't have to dress nice for work so I don't dress up.. or wear make-up... or brush my hair for that matter. I'd just rather be sleeping. Actually, if I could sleep in and still arrive at my destination looking effortlessly fresh and cute, as if by magic, that would be great. The best of both worlds. Of course, I was painfully aware of my style slump upon sending a text that offended my own sense of feminism (and really rationality). So I decided I needed style rehab.

Now for those of you reading this that are all "I'm a Mom, that's what I care about and I'm fine with looking however I look blah, blah, blah...", congratulations on being more self-evolved than I am. Seriously. I just happen to be at a point in my life where I feel better when I look better. From time-to-time, I find myself feeling blah or frumpy and it typically ends with me cutting all my hair off. Since I'm trying to grow my hair out, I thought I'd start with some cute clothes. Ha haha ha ha! I forgot that all maternity clothes (that aren't ridiculously expensive) are just sacks. Big sacks for shirts and even bigger sacks for dresses. There are two color options; giant floral print or black. If you want something more figure flattering, you can get your sack with a draw-string just under the bust. So Kim Kardashian, if you are out there somewhere reading this, I get why you are hesitant to plunge into maternity wear. It's ugly. It even sounds ugly. I was shopping online and looking at shirts that were being referred to as "Slub Maternity T-Shirt". I'm fairly certain that immediately upon putting on the 'slub' t-shirt, the wearer would have the overwhelming desire to eat a gallon of ice cream directly from the carton while watching a horrible LifeTime movie starring Meredith Baxter-Brooks.Nothing that isn't pajamas should be called 'slub'.