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Ozzie Isaiah

 

Ozzie Isaiah, baby with anencephaly and encephalocele

Ozzie came into this world on Oct. 1, 2018 at 7:28am weighing in at a whopping 7 pounds and 5 ounces. In that moment our lives had changed, we are parents! But 4 months before all the excitement came, we were hit.

Hard.

Every appointment and ultrasound before 20 weeks went smooth, every time the wand touched my belly, we saw a seemingly healthy baby. Perfect feet, perfect hands, perfect heartbeat. Just perfect.

It was time for our 20-week anomaly scan, my husband and I went in super excited to see every detail of our child. We had figured that if there was anything wrong with baby, we'd have known by now, right? My blood tests would come back normal; my urine tests always came back normal so what was there to worry about?

We walked into the big ultrasound room, I laid down, and lifted up my top. I was in an awkward position to see Ozzie on the screen but that didn't matter to me, I was just excited to see him, period. The ultrasound tech begins the scan. Ozzie's heart looked fine, his kidneys were functioning properly, there was sufficient blood flow exchange between baby and I via our umbilical cord. His abdomen was measured, his legs were measured, and then it was time to measure the head.

"I'm having a hard time getting to baby's head", we heard.
"Let's see if emptying your bladder helps."
I stood up and went to the bathroom, peed and came back out.
"Okay, let's look at some other things, see if that'll get him to move and then we'll go back to the head"
"Okay, sounds great."

The ultrasound tech puts the wand back on my belly and we get to see more of Ozzie, she moves the wand back to where his head is positioned and it seems she is still having a hard time getting a good measurement on Oz's head. After a few more minutes of trying, we decide Oz isn't in a favorable position so we call it a day and hubby & I go home.

After the appointment we didn't really think too much into the fact that Ozzie's head was hard to measured. We mutually agreed that he might have been in a weird position so he just needs to move. Simple.

A few weeks go by and we're back at my regular OB for a routine check-up but this time the vibe of the room is off. My doctor asked if I'd been out of the country while I've been pregnant. Of course not, just work and home. We did travel to Houston for Easter (7 weeks before the 20-week scan) but that was it. I was asked if I'd been mosquito bit while we were in Houston. No, not that I could remember. And that's when the doctor initially told us that he suspected our baby may have Trisomy 18.

Trisomy 18? Couldn't be. Are you sure? How?

Ozzie Isaiah, baby with anencephaly and encephalocele

I'd been taking what I thought were the best prenatal I could find and I even started taking prenatal vitamins before I even got pregnant. So, what do you mean my baby might have Trisomy 18?

With all the uncertainty in the room, our doctor referred us to a maternal-fetal specialist. God bless him. My husband and I leave the appointment devastated. How could this happen to us? What did we ever do to deserve this?

Maybe it's just baby's awkward position is what's causing all this commotion.

"Come on Oz, move!"

We go for our appointment at the specialist in Tulsa, OK at 8 am the very next morning. We have the ultrasound done and it's the same old song. Everything looks PERFECT but that darn head! We still couldn't get a good look at it (and they tried every single way to get to his head) but it just wasn't happening. That's when the terms microcephaly, encephalocele and possible anencephaly entered our vocabulary.

The specialist believed that baby does not in fact have Trisomy 18 but he could have microcephaly or anencephaly because there seemed to be an opening in his skull which caused his encephalocele (brain tissue protruding from the opening). Our baby's skull had not formed all the way and we did not know what that meant for us or our baby's future.

We were asked if we wanted to terminate the pregnancy and my husband and I quickly declined. We weren't 100% sure what was going on and neither was the doctor so we weren't going to just take his word for things, I wanted to be certain and see things for myself so for me that meant carrying our baby to full term and letting God handle things from there.

From that moment on, I just tried my hardest to enjoy my pregnancy. We shared our news with family and a very few of our friends. Being only 23 and 24 years old, we didn't know anyone that had been in our position or that could relate. Everyone around us was having healthy babies so why weren't we?

Ozzie Isaiah, baby with anencephaly and encephalocele

The uncertainty was too high to say for sure what was going on so we tried to keep things to ourselves for the most part. We didn't want to be overwhelmed with everyone's sympathy just yet, we decided let's be strong and happy because that's what Ozzie needs and so we did just that.

I continued to work my entire pregnancy, we continued to go to our doctor's appointments both with my regular OB and with the specialist, and we prayed HARD. My specific prayer would always be for Ozzie to be made whole and complete, to be healthy and happy.

My husband and I along with one of the doctors at St. John Medical Center created a palliative care plan for Oz. To my husband's and my understanding, the palliative care plan would go into effect if it was obvious that our son would not make it after birth so we wanted to make sure he was as comfortable as he could be in passing. I strongly felt in my heart that there would be no need for a palliative care plan because this kid is a fighter. I mean, I'm his mom, I would know.

I also wanted to make sure that in the event that our sweet boy did survive, we wanted him to receive all the care he can get just like any newborn.

As we reached the end of my pregnancy, knowing we would have to drive 1.5 hours to St. John, we decided to make a plan to be induced so that my mom and grandma could be here and so my husband and I could be at the hospital in time to deliver Oz. My original due date was October 5th so we set the date for October 3rd.

Who would've thought that God and Ozzie had plans of their own. On September 30, I (unknowingly) went into early labor while I was at work. I worked my whole shift, clocked out, went home and still ran some errands frantically trying to finish up the nursery because something told me this baby is coming, soon. It was about 9:30pm and the contractions were coming quicker and stronger, they were kicking my butt so I knew it was time to go to the hospital. My husband and I grabbed our pillows and blankets, threw on our shoes and headed to Tulsa.

WE'RE ABOUT TO HAVE A BABY.

Ozzie Isaiah, baby with anencephaly and encephalocele

We get to St. John at about 11pm and the rest was history. My labor and delivery was surprisingly quick and easy considering this was my first time. I did it all without much pain meds, only 2 doses of fentanyl to take the edge off. My water broke on it's own and it was show time! After a solid hour and a half of pushing, our sweet baby boy was in our arms.

So many questions went through my head all at once. Is baby alive? Is he okay? How's his head? How many fingers and toes does he have? Am I okay?

He didn't cry first thing, but he did sneeze to assure his that he was there with us. They laid him on my chest and I fell in love. I looked down and even with his encephalocele covering a third of his face, and a misshapen skull, he was just so perfect to me. I was already in love.

After his birth, everything started happening so fast. When we made our palliative care plan, we requested that a chaplain come in after the birth and pray with our family. We also requested for a photographer from Now I Lay Me Down To Sleep to take Ozzie's first and last pictures. Those ended up being pictures we didn't even know in the moment that we wouldn't have to use.

After all the chaos finally dissolved, it hit me. A couple hours in and our sweet baby boy was still with us but it was such a bittersweet feeling. We were expecting for him to be swept away to the NICU but the doctors generously allowed him to stay with us the whole time. My heart was attached but my mind still knew to keep a distance, just in case.

We weren't sure if we were going to say goodbye to our baby before we left the hospital but we just kept going with the flow.

Ozzie Isaiah, baby with anencephaly and encephalocele

We were showered with love by our family and friends that came to visit that first day. We were all so excited but secretly I was still scared. What if I go to the bathroom for a second and by the time I'm out Ozzie is no longer with us?

How am I supposed to go forward from that?

With every hour that would pass by, I just watched our baby thrive and thrive. Now, my mommy instincts were kicking in. Every diaper that I got to change came with so much excitement. Every feeding was so special to me. I was really soaking all of this up. And then I felt it. This baby isn't going anywhere.

God knows exactly what he was doing when He put Ozzie in our lives. Even though it was such a scary and unsure situation, this baby was meant for us and we were going to do everything in our power to make sure he got nothing but the best.

After the hospital showed no signs of being able to go forward and figure out something to do for Oz's encephalocele, my husband's aunt was able to find hospice care for Ozzie and that would allow us to at least bring Oz home.

October 3rd, the day we were supposed to be induced, was the day we went home.

The first couple of weeks were hectic. We had hospice in and out everyday. We had guests coming to see our new bundle of joy, and we were learning how to adjust to our new no sleep schedule with a baby. Eventually, as Oz's health increased, the chaos decreased.

Fast forward to today and we have a happy and healthy 3, almost 4 month old. My prayer was definitely answered. Oz eats on his own and eliminates on his own. His hospice nurse has dropped her visits to 1 time a week. We go to his pediatrician regularly and he's even had his 2 month shots. We are still slightly concerned about his vision but we know for a fact he can hear. Oz currently takes anti-seizure medication to prevent them from happening. Ozzie has managed to hit milestones just like any other baby and continues to bring endless joy to our lives.

Ozzie Isaiah, baby with anencephaly and encephalocele

My husband and I were able to find a neurosurgeon in Dallas, Texas who will be operating on removing Oz's encephalocele in February.

Things are looking up for us and I just want our story to give someone going through the same thing hope and a reminder to keep your faith (regardless of your religion). I truly believe that God has a way of making things happen for people. I believe that what is meant for you will happen for you.

Doctors can only be so sure and know so much but at the end of the day, it's not their word that is final.

To the moms who have lost a child to anencephaly or have lost a child period, my heart is with you. I look at my son, and even though I don't know you, I think of you every day. You are a strong woman and you will make it. Your blessing is coming.

 

 

Last updated Mai 1, 2019