Rory's Story

When last I left this blog, we were waiting. We didn't have to wait for long.

Aurora Hoshi Dyer - March 28, 2013

The day after I wrote my last post, I went to my doctor for a somewhat routine checkup. While she looked at the sonogram we talked about what had happened over the last few weeks. We talked about my blood pressure and heart rate spikes. We talked about the swelling in my hands and feet. Then we looked at Rory and my doctor got a funny look on her face.

"Let me measure this fluid level again."

Rory was surrounded by more fluid than should be there. This is another symptom of pre-eclampsia though I was still testing negative. My blood pressure was high again. Everything was just borderline or right over the line so as not to be an emergency but still concern us all. I was 37 weeks. Typically doctors don't like to induce without an emergency until 38-39 weeks. Ben was back there with us and the three of us talked about our options. Doctor Monti finally said that she wanted someone else to look at me. She was sending us right over to a high-risk doctor who would get a closer look at Rory and possibly back her up in the choice to induce.

At that doctor's office, we watched as the high-risk doctor looked all over Rory. She was measuring almost 9 pounds. She confirmed that there was a lot of fluid. She agreed that Rory needed to get here sooner rather than later. She also agreed that it wasn't safe for my water to break on it's own.

I went home confident that my doctors were taking great care of me and my baby but nervous. This was a problem we had never seen coming. I have scrawny little babies that demand to be released early. Rory was content to settle in and grow larger with every day. My body was just giving out and couldn't hold her much longer.

No one could pinpoint why there was so much fluid. The high-risk doctor said that some heart problems will be the cause so we went on Wednesday back to the office for a fetal echo. Her heart looked beautiful. There was still no answer to what was happening. All we knew is that a large amount of fluid made it dangerous for my heart and upped the possibility of stillbirth or cord compression. We scheduled the inducement for Thursday the 28th.

Here's the thing; all of my other labors started in the middle of the night. My water broke with Sophie at 12:15 AM. I began contractions with Gideon at 2 AM. Milly's water broke at 12:30 AM. This was the very first labor where I was able to eat a good dinner, go to bed early, sleep as soundly as possible and then eat a good breakfast.We were able to give the other kids to Grandma the day before so she didn't have to make a mad dash an hour away in the dead of night. We were able to plan! It was divine! We got the hospital and I was hooked up to Pitocin. I was already dilated to a 5. I was nice and hydrated. There was no possible way this wouldn't go quickly!

Yeah.

After hours of painful but barely productive contractions, my doctor came in to break my water. I had two nurses that day. One was a veteran and one had just graduated and was training. They were amazing. The three ladies surrounded me and my doctor said that she was just going to prick a tiny hole in my bag of waters and let it slowly trickle. Just to be safe.

3 seconds afterward, all three leaped away and for the stack of towels as the bed and floor were basically flooded. The look on my doctor's face was priceless.

OK! So I'm relaxed from the epidural, the Pitocin is still going and now my water is gone so she can start moving down and I'll dilate quickly and we'll get her here in no time!

Yeah.

Every thirty minutes, Doctor Monti would come in and stare at Rory's heartbeat on the monitor. Then she would check me again. Then stare again at the monitor and mutter. Rory wasn't going anywhere. Her heartbeat began to slow down with each contraction. I watched as my doctor got more and more worried. Finally I spoke up;

"I think you're going to have to go get her."

Let's back up to the Sunday before. We had been watching the Bible miniseries along with everyone else in the Bible Belt. We had just seen the episode with Jesus in Gethsemane. I watched as Jesus became aware that it was time for him to die. He went into the garden, begging his friends to just be near him, and he prayed that God would let him out of this. Did it really have to happen this way? It was too much. He sobbed and pleaded that he wouldn't have to do this thing. Then he wiped away his tears and said three times that he would do this if it was God's will.

I am not comparing myself to Jesus. This was just a baby. However, I've always been of the mindset that there was no way that God would put me through a c-section. It just wouldn't happen so there was no reason to even concern myself with the thought. Then I realized that God had his hand on my heart. He was telling me that He may ask me to do things that I never thought possible. He might ask me to do things that I hate or that would hurt. I had to be open to this possibility and follow Him no matter where He might lead. He would be there. I sat in the bath and cried. I read through the Gospels as Jesus begged the same way I was begging. Then I dried my tears and gave up. I put myself in God's hands and asked that He would carry me through whatever happened.

Sure enough, Dr Monti came in around 6:00 PM and said that they were going to go get her. I felt only relief. There was no fear. It was almost over. Rory was going to be safe. We would all be OK. He had promised.

There was a flurry of preparation as Ben was whisked away to get scrubs and my epidural was cranked up to 11. They wheeled me into the operating room and I waited and watched as everyone moved around with purpose. Ben came in and sat down by my head. They already had the drape up, thankfully. Poor guy was really nervous and he doesn't do well with medical stuff. Especially bloody medical stuff. We talked and waited as everyone got to work.

At 7:11 PM, we heard a little cry.

8 pounds 5 ounces of furious cute.

The little cry soon turned into screeches of anger so I knew it was our girl! I sent Ben over to monitor her progress and coo over her cheeks. Meanwhile, Dr Monti made sure that this was the last time I would use her OB services. That's right folks, we are officially a family of 6. All done. No more.

This time, though, we feel complete.

We're the Dyer family.

Ben, Kelly, Sophia, Gideon, Millicent and Aurora.

Waiting

Last week got a little interesting. By interesting, I'm using Wash's definition.

Wash: "This landing is gonna get pretty interesting"

Mal: "Define 'interesting'."

Wash: [deadpan] "Oh God, oh God, we're all going to die?"

On Thursday, my nurse came out to give me my progesterone shot. It's the last one. Hooray! She got out the doppler and began searching for Rory's heartbeat. She couldn't find anything. I kept twisting and turning to see if we could get her to turn or move but I wasn't feeling anything. Finally, we found her and got her to kick. Her heartbeat started at a normal 145 BPM but then dropped down to 90. Alarmed, my nurse called my doctor and said that she thought I needed to come in and be monitored. Doctor agreed and Ben and I took off.

I was supposed to go to the doctor that day at 1:30 so it wasn't much of a difference to go to Labor and Delivery Triage instead. They hooked me up to the monitors and began some tests. My heart rate was too fast. Rory's heart rate was too fast. Blood was taken to check for diabetes or preeclampsia. I laid on the bed and tried hard not to let my mind run away. I wasn't having many contractions and they were still mild. Finally, everything came back normal. My heart rate had come down and so did Rory's. They did a quick sonogram and Rory looked great. Her fluid level was right on the borderline of normal/high but it wasn't enough to warrant any intervention. I'm dilated to a 2. I was sent home with orders to take it easy but that I was off of bedrest.

The next day was officially 37 weeks. This was the day I had Milly. There were already a lot of labor warning signs and I assumed that this would go much the same way. My mother had taken the kids the night before in anticipation of Rory's possible arrival. Ben took me to breakfast and we did a little shopping. I came home to rest and then went out with Mom and Milly. We shopped around and I realized that contractions were getting stronger and closer together. It's working! We're almost done! Look at the cute Easter headbands that make your daughters look like giant flowers!

Grandma left before the kiddos came home on the bus from school. We played a bit and made dinner. Suddenly those kind of contractions became double-over-and-nearly-scream contractions. They were 2 minutes apart and lasting for over a minute. I could barely breathe between them. We called my parents and they came back over. We loaded up and took off for the hospital assuming that we would be a family of 6 in no time.

We make it into Labor and Delivery and start getting hooked up. The doctor checks me and I'm dilated to a 3. That's it?!? After all of this? I feel like I'm being torn in half! They check me and realize that I'm pretty dehydrated. Rory still sounds fine but she's not turned down correctly. She's hitting my pelvic bone. My bag of waters is right there but Rory's not hitting it enough to break it. They hook me up to a saline IV and unhook the other monitors. They tell me that I'll go home after getting hydrated. So...we're not having a baby? I "get" to go labor at home? Well...alright. I get three bags of saline and the contractions all but disappear. The dehydration was making them seem 10 times worse than what they were. So we go home around midnight and try to sleep.

Ben takes me the next day to breakfast and then to get a pedicure. He goes and buys a birthing ball. The man is a flipping saint. We load up the car and go pick up the kids from the grandparents. Here we find out how hard Gideon is taking things. The night before he had started fussing when my Dad got there. Papa cuddled him and Gideon fell asleep on his shoulder. When Grandma and my sister came over, they got everyone loaded up to take them to dinner. Gideon began crying when he woke up and didn't stop. They passed him around at the restaurant trying to soothe him. My mother finally held him and covered him up with a jacket to block everything out. He fell asleep again. He cried when they left and passed out that night. We came to get him on Saturday afternoon. He was clingy and needed so much extra reassurance. For the last week his life has been upside down. Mama and Daddy keep disappearing for some reason. Sometimes Daddy picks him up from day care and sometimes it's Grandma. One night he'll sleep at home and the next he'll sleep at Grandma's. He just doesn't understand what's going on and it's making him upset.

We spent Saturday night out on a date. The kids went to a Parent's Night Out that we had registered for a week ago. Ben and I went to dinner and then came home to rest. I took a hot bath and stayed off my feet. We called his parents and filled them in on everything that's happened. Ben went and picked up the kids and we put them to bed. Then we tried to go to sleep. From 11:30 to 4 AM I could not sleep. My heart kept racing, I was having bad contractions and I could not lay down without intense pain. I sat up at 2 AM and drank 32 ounces of apple juice to see if hydrating would make the contractions stop. They stopped but I was still in a lot of pain. At 4, I woke Ben up crying. I just needed sleep and I couldn't sleep. He convinced me to take some sleeping pills and to not worry about the kids in the morning. I could sleep as long as I needed. I took the pills and finally drifted off. I got on-and-off sleep until noon on Sunday. I got to cuddle my oldest for an hour. I played with Milly and watched as Gideon stayed in a quiet room with his iPad for hours. My babies were OK. I cooked dinner that night. Sunday was a great day.

In the midst of all of this, we've been trying to buy a house. I'm not even kidding. We found one house that we really like and we're submitting a bid. We would move in May. It's exciting but it's adding a layer of HOLY MOLY to our lives.

Today is quiet. Milly is twirling while she watches Mickey. The kids are at daycare. I feel fine and haven't seen much labor signs so I think she's staying put. I'll see my doctor tomorrow.

Now we just wait.

Battles

ECI just left after evaluating Milly for the second time. She can hear now and she's making good progress.

Kind of.

Milly has qualified for ECI services regarding speech and cognition. Milly has almost no attention span. Her motor skills look fine but she doesn't answer or even acknowledge people. She doesn't play or interact much. She threw a million tantrums in the hour they were here.

Yes, she's tired from the Daylight Savings Time change. She's on antibiotics for a red ear that's hurting. She's still working on those frakking molars. And she's two. Two year olds are temperamental.

Or are they? I don't know what the typical development of a two year old looks like. My kids don't work that way. She acts similar to how Sophie was at two. Does that mean it's autism? I don't think so. I think it's a combination of learned behavior from her siblings and no social interaction.

Milly needs to be with her peers on a regular basis. A play group, Mothers Day Out or preschool would do wonders. It's just not happening right now. We're in a holding pattern until the new baby gets here and I can actively participate again.

I think that's the hardest part right now. I feel that this is all my fault. I can't be the mother that my kids need. I have to tell them to wait. Am I neglectful? No. My kids are fed, clothed, clean and loved. I just can't go the extra that I know they need.

A battle is looming. I'm ready to fight but I'm waiting on my body.

What's My Line?

Gideon has moved into script-talking. There is a little spontaneous speech but the majority of what he says is a litany of preset scripts gleaned from normal situations or TV.

When Gideon asks for something he wants, he will say "Pweash?" and sign. A normal response is "Yes, you may!" followed by the item of desire handed to him. (iPad, cup of drink, food, toy, etc.)

Lately, he's been purposely dense if the response is anything other than a hearty agreement and handing over of the item.

Example:

[Gideon hands me an empty sippy cup.]

G: "Miyuk? Pweash?"
(Milk? Please?)

Me: "Not right now, buddy."

[Gideon furrows his brow. Leans in to me.]

G: "Yesh, you may!!"

The implication behind this:

"Mom, DON'T BE EMBARRASSED. You just forgot your line. It happens! Lets try that again."

Nice try, Dude.

To Care and Be Cared For

Since my children were born, I have been the one to care for nearly all of their medical needs. I tracked what the two oldest ate in their respective NICU stays. I'm always the one to take them to regular check-ups. I know their medical histories and can tell a doctor when they started barfing and how high the fevers got. I was the one to stay with Gideon in both of his hospital pneumonia stays. I've held each kiddo down for shots and wiped tears after. I know that when passing out stickers and suckers that Sophie and Milly like any kind of sucker but Gideon prefers orange and that Milly eats stickers.

Last week, I had to give up my usual position. On Monday, the girls went to the doctor for their 5-year and 2-year check-ups. My mother took them. She was the one to hold Sophie's hands while the doctor looked in her ears. (Sophie hates people touching her head.) She held Milly during her shots and cuddled her after.

On Thursday, we got a call from the school nurse saying that Gideon was listless and running a fever. Ben went to get him and laid him down for a nap. I can't drive and I'm not supposed to pick him up. I held him during breathing treatments that night and let him sleep on my chest. On Friday, he was worse and my mother took him to the doctor. His fever had spiked to almost 103. Both ears were infected and the strep test was positive. She brought him home and whisked the girls away for the weekend. I was able to give him medicine and cuddle but Mom was the one who held my feverish baby while the doctor swabbed his throat. How that must have scared him! Ben was the one who held him down for medicine he refused to take. Ben took him to the duck pond on Sunday when he was feeling better.

On Sunday, Sophie smashed her finger at Grandma's house. My mom and dad calmed her down, cleaned it and put ice packs on it while she curled up in her Minnie Mouse blanket. When she came home, I didn't like how much it was still bleeding and I called the after hours nurse who said to get her to the ER. Ben took her. He held her and told her how brave she was. He and two other nurses and a doctor wrestled her to get her bandage off. (Forget soccer. I'm putting her on a wrestling team.) He held her for an X-ray which showed a broken fingertip. Her first broken bone. He dried her tears, praised her bravery and carried her out.

Three times this week I was reminded that there are many other people that can care for my children. Ben told me that God was possibly doing this on purpose to release my sense of control. Perhaps God was asking me to take care of Rory since I'm the only one who can right now.

It truly does take a village!

Desperately Seeking my Son

The two older kids started morning day care about a week and a half ago. Since I'm supposed to be staying off of my feet it was getting harder to entertain them in the mornings before school. Those few hours have been a lifesaver. It's a great place. There are lots of kids to play with and the teachers are wonderful. It's very structured which is very important for spectrum kids. My kids need to be given a task and a time to stop. They need those boundaries. "Free play" is too abstract a concept for them.

Each day I look online at the webcams that are set up in their classrooms. Sophie runs around with the little girls. They giggle and wiggle as they go to the bathroom in groups. (Already?!?) She chases after boys on the playground. (ALREADY?!?) She sits quietly when they do table work or go to Circle Time. She's doing beautifully.

Then I pull up Gideon's classroom. The first few days, he cried when Ben dropped him off. I would see him holding the hand of his teacher and following her everywhere. He would sit in another teacher's lap or right beside her during Circle Time. After a few days, the tears stopped but he would still attach himself to a teacher for a while. Slowly he's been inching away. However, the inching away has been to just go play by himself with no interest in what the others are doing. Today I watched as 29 kids sat in a circle and a teacher handed out some paper. They all waited as patiently as 3-year old kids could but all stayed seated. Then I saw my little boy over by a bookshelf with a ball. He was turned completely around from the kids and teachers. He was fully absorbed with this bouncy ball. One teacher passed out papers and the other was laying out plates for lunch time.

I don't begrudge the teachers working like this. This is not a PPCD class. There are two teachers and 30 kids. I'm not expecting a personal aide for my child. It just stung to see my little boy so isolated. He seems to walk alone in his own little world.

Gideon's PPCD teacher sent home a picture taken in class. I've never seen one so perfectly capture my Little Prince. He's incredibly handsome - those eyes! - but also seems...just lost or trapped. Not in a bad way but unavailable to me. I wish I knew how to explain.

I get glimpses of my boy. Sometimes we can reach him. He looks Ben in the eye every morning to say "Hi!" and kiss him. He tickles me the same way I tickle him and giggles while fully engaging me. When he is tired or hurt, he comes looking for me and snuggles against my shoulder.

But they are short little looks. A few minutes later, he is intensely focused on something else. (iPad, toys, reciting a script from a show.) I feel like the door is closed again and I begin waiting for it to open again. We'll just keep working on it.

In My Head

Do I love my kids? Yes.

Do I hate being a parent of kids with autism? You have no idea how much.

My kids were given to me for a reason. I know that. I also know that whatever challenges God gives me, He will also give the resources needed to meet them. He has never once said that it would be easy. In fact, He says that it's more than likely going to be hard.

A battle.
A struggle.
A trial.
A valley of darkness.

All leave me tired. Physically, mentally, emotionally.

I'm tired of people watching my 5-year old have a meltdown and then looking at me like I'm a permissive parent who spoils my bratty kid.

I'm tired of people asking me why my son covers his ears, doesn't make eye contact, flaps his hands and babbles.

I'm tired of people asking me if Milly is "normal" and then saying that she's two and ready to be potty trained.

I'm tired of people asking me if I'm worried about Rory being normal or ignored.

Most of all? I'm tired of people acting like I'm a saint for taking care of these poor unfortunate souls. They are my kids. They are the most amazing little beings I have ever seen. There is no other option. However, I'm still allowed to be tired, frustrated, and angry at this whatever-autism-is disorder that causes me to be cut off from my incredible kids.

I have a rock, a strength, a refuge in my God. For this, I am grateful. He knows the outcome and is already stretching out his arms to embrace me before I even know that I'm about to break again. He anticipates my needs. He lifts my burdens if I am willing to give them up.

For this, I am thankful.