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KosAbility is a community diary series posted at 5 PM ET every Sunday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and/or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
My pregnancy was such a surprise. A welcome, earth-shattering,  miraculous surprise.  I never thought I would ever get pregnant on my own. I married my high school sweetheart at age 22 and had been having unprotected sex ever since with the goal of getting pregnant, even though my periods were irregular due to Polycystic Ovarian Syndrome (PCOS for short). We weren’t bothered at first because we were young and having fun, but as the months turned into years, and I hit my 30th birthday, my husband and I both decided it was time to get serious about having a baby. Follow the orange squiggle for the rest of my story.

I went to my OB-gyn in March of 2012 for a fertility treatment consult. We did my normal well-woman visit, and because of my PCOS history, we did a vaginal ultrasound.  The small cyst on my right ovary was nothing of concern; my doctor seemed confident it would resolve on its own. We decided to do 3 months of birth control in an attempt to reboot my cycle, and take steps from there.

I took the pills. My last period had been almost 6 months ago. But even after I finished the sugar pills, it never came. The days passed and I decided, just for a laugh, to take a pregnancy test before starting my next pack of pills. When I saw the two lines, I started to hyperventilate and through my tears, I called for my husband to make sure I wasn’t seeing things. Finally. Miraculously. My doctor nearly cried when I saw her to confirm the pregnancy. My cyst had been from ovulation.

I had a mostly uneventful pregnancy. Perfect blood pressure, not much weight gain. Spring turned into summer and summer dried up into fall. My little guy was expected on December 6th. On election day, I called in to work. I didn’t feel like myself and I was seeing spots. The doctor wanted me to come in so they could check my blood pressure and monitor the baby. My husband and I went and voted and then went straight to the hospital. My blood pressure was sky high. They admitted me, made me do a 24 hour urine test, and sure enough, I was spilling protein like crazy. I was also 100% effaced and dilated to a 3, but was not having any contractions. I was scheduled to be induced the next day, when I reached the 36 week mark.

I was excited. Nervous about the pain of labor, but to be honest, the contractions weren’t bad at all until I was dilated to a 7. That’s when I forgot how to breathe and had to be helped through each contraction by my trooper of a husband. Finally it was time to push. I pushed for two and a half hours with no progress. I was exhausted. My doctor said she thought my pelvis might be too narrow and that she didn’t think we’d be able to get the baby out vaginally. “I don’t care,” I said, “we can do the c-section.”

Everything happened so fast. I was in the operating room in a matter of minutes being prepped for surgery. I was sitting up with my legs over the bed and my husband said “Look at me.” I replied “I am looking at you.” And then he said “Oh my god, her blood pressure.” The last thing I heard was my doctor saying “Get a crash cart ready.”

When I woke up after the surgery, my husband explained that I had a seizure. He noticed my head twitching and asked me to look at him, but I couldn’t move my head any further than just an inch, just twitching back and forth. My blood pressure had reached a level that caused me to seize, and they had to do an emergency c-section. Our son was fine and healthy (so we thought), born on the evening of November 8th, two days after our 8th wedding anniversary. Exhausted and pumped full of drugs, I slept.

In the morning, I was so ready to meet my son. Who I met instead was the nurse practitioner in charge of the nursery, a neurologist, and my doctor. “We’re sending your son to a different hospital because he’s been having seizures and we’re not sure why.” Apparently he had the first seizure about 12 hours after his birth, and another one an hour or so after that.

I got to see Owen for three minutes before he was transported to a children’s hospital. The transport team brought him to my room so I could see him before they left. I got to touch his foot. Then I didn’t see him for three more days. My husband left to go be with Owen and to be there to talk to the doctors. At this point we had so little information, we didn't know if Owen was expected to live or die, what we could expect for his future, nothing. It was terrifying.

That night, in the middle of the night, I received a phone call from a neurologist at the children’s hospital. “Hypoxic Ischemic Encephalopathy,” she said. Don’t google it. It’s scary. I had already been crying because the woman next door to me had a loud baby, and I was heartbroken that her baby was there with her, snuggled in her arms, and mine was in a hospital half an hour away and had yet to be held by me or my husband.  Those three words made me cry harder.

Basically at some point during labor, no one is sure when or why or for how long, Owen’s whole brain was deprived of oxygen, which is why he seized. No one could really tell us anything more. Apparently this type of brain injury is different for every child, and the outcomes are unpredictable.  There are grades of HIE, 1 is mild, 2 is moderate, and 3 is severe. Because of the seizures, Owen presented as moderate.  The only ‘treatment’ for HIE is brain cooling, and even that isn’t a guarantee, and in order to get it, there are certain criteria to meet. Owen’s Apgar scores were great, and by the time he had his first seizure, the window for cooling had passed. This link talks more about cooling criteria for neonates.

When I was finally released from the hospital, I went straight to the children’s hospital where I was able to hold my son. My husband hadn't held him yet because he wanted me to be the first one. How he was able to be that selfless, I'll never know. We nicknamed him Hulk, because he ripped out his intubation tube his first day there and also he was about double the size of the other babies in the NICU. He didn’t need to be intubated, he was breathing on his own. They removed his nasal cannula; he didn't need oxygen either.

No one prepares you for what the NICU actually looks like. It is shocking seeing a baby, not just my baby, but any baby hooked up to all those machines. My son’s poor scalp was bleeding raw in some spots due to the EEG he received. His head was elongated anyway from being trapped in my birth canal so long. He screamed so hard whenever his head was touched. There were six other babies in my son’s “pod”, all of them micro-preemies. One baby had never cried. One baby was being treated as though it were still in the womb. It is a place no parent should ever have to go. We went every single day, spending nearly 12 hours there before dragging ourselves home.

He slept a lot, as newborns do, but was extra sleepy from the phenobarbital he had been given to prevent any more seizures. When he was awake, he was intently focused on me and his dad. From birth, he’s had amazing neck control, holding his head up briefly when we held him. He was receiving my breastmilk via feeding tube, as many HIE babies lack the suck/swallow reflex, but we still tried hard to breastfeed. I don’t know if it was my nipples or if he just couldn’t figure out how to latch, so we decided to try a bottle. Magic! We were overjoyed he could suck and swallow, so I decided I’d be happy enough to just pump. The feeding tube went away! He had an abnormal MRI and EEG, which was to be expected because of the seizures.  His vitals were always great. The nurses referred to him as the Gulliver of the NICU because he was a 9 pound baby and they were used to dealing with mostly micro preemies. The newborn diapers they tried to use looked like a speedo on him.

After 12 days in the NICU, we finally got to take him home, the day before Thanksgiving. Talk about having a reason to be thankful.

Owen is now 15 weeks old. He weighs 16 pounds. He is a chubby, expressive boy who is so far developing normally. He has rolled over from belly to back many times, has great head control, giggles, laughs, and coos. We aren’t sure what the future holds for him. I’ve been told the worst to expect is cerebral palsy. I’ve been told he might have other significant developmental delays. I’ve been told he could turn out to be just fine. The most frustrating part about this process has been the “wait-and-see”.  We have a neurology appointment on Wednesday to access where he’s at and hopefully we’ll be able to wean off the pheno. He has been seizure free since being on the pheno and his dose hasn’t changed even though he’s nearly doubled in size.

Many kids who have suffered this brain injury do indeed go on to have varying forms of cerebral palsy. Many kids are non-verbal. Many kids have either low or high tone in their bodies that prevent normal movement. Some kids are deaf. Some kids can’t eat orally and either eat via g-tubes or have to have Nissen Fundoplication in order to receive nutrition. I feel lucky that Owen eats well orally and hasn’t so far developed tone issues in his body. I would love to hear your stories about cerebral palsy, hypoxic ischemic encephalopathy, developmental delays in children, or your own NICU journey.

My username comes from the title of a song written by Brett Dennen. Another of his songs is my Owen-song, a song I sang to him almost daily when I was pregnant, before I even knew he was Owen, and a song I sing to him still. It’s called “Don’t Forget” and it has helped me face this unexpected journey.  I share it with you all because it gives me strength when I feel scared about Owen’s future. It reminds me that he is already perfect, that he makes my world a beautiful place, that he is a secret waiting to be found.

I’m not going to focus on what Owen can’t do and let that be what defines him. We will celebrate what he can do and get help for what he struggles with. I feel more prepared than I thought I would to adapt to and cope with any disability he might have. There is an advocate in me that I had no idea existed, and a determination in me to give Owen whatever he needs to live his life to the fullest. No matter the outcome, this little boy has changed me forever. I always expected to love my baby, if I was lucky enough to get one, but I had no idea it could ever be this deep or this wide.  

Thank you for reading. I am having people over for the Oscars tonight, so I'll be hit and miss on comments right away, but I will reply as quickly as I can.

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