O3: Our incredible little fighter.

"Your baby Sagittarius will get into all kinds of trouble before he can walk, so don't be surprised! Sagittarius children like to explore well past the boundaries set for them by their parents."


Sweet Baby O3. Where do we start? 

First, let us just say that without the support system we have, we could have never made it this far. The week spent in the NICU was full of highs and lows and we are so thankful that our family & friends were there to support us. We can never repay you for the love and strength you showed us during such a difficult time.

We never thought we'd have to endure so many obstacles in such a short time with Baby Owen. Since finding out "IT'S A BOY!" at our 18 week appointment, we developed so many ideas of who we thought he'd be -- never could we have imagined that FIGHTER would be the best word to describe this little guy. But I guess maybe we should have, since the Celtic meaning of the name Owen is "Young Warrior." How fitting.

My water broke Wednesday morning at 2:42 a.m. In my sleep. Eek. We (surprisingly) were somewhat calm and gathered our things to make our way to the hospital. Shortly after arriving we were admitted to Labor & Delivery and began our 27 hour journey to meeting little Baby Owen.

After a very long, exhausting Wednesday, things started to get complicated. Baby Owen was being stubborn and wasn't making any signs of making his big debut. Against my original plan, I opted for an epidural earlier in the day which (unfortunately) didn't work. I was started on Pitocin to bring on contractions and they continued to increase and decrease the whole day through. By 10pm Wednesday night, we were starting to get nervous. Then by midnight, we were made aware that around 2AM we would start actively pushing after more rounds of Pitocin. 

By 2AM, everyone was exhausted but excited to start our final leg of the labor... delivery! Unfortunately, things got more complicated.  Baby Owen was stuck in the birth canal and every time we made some progress, he retracted back in. This went on for hours. Around 5 a.m. things were starting to get tense, and we were asked if it was okay for them to try a vacuum to assist in getting him out. They tried twice and on the second try, his head finally came out but resulted in a Shoulder Dystocia. This is when, after delivery of the head, the baby's shoulder becomes stuck. Shoulder Dystocia is extremely rare. Once this happens, you have a very short time to get the rest of the body out (around 6 minutes).  A "Code O" was called in the hospital and our room flooded with doctors and nurses. About 90 seconds and A LOT of work later, Baby Owen was finally out. 7lbs 1 oz, 21 1/4 inches long and a head full of dark, crazy hair. It was 5:34 a.m.

He didn't cry for a while. I wasn't exactly sure what was wrong with him because of how much was going on -- all I had been worried about was getting him out. I looked over and saw them working on him --  my Mother and Husband's faces were filled with worry. A short while later I finally heard his cry and nothing has been the same ever since. As it turned out, he didn't breathe for the 90 seconds where his head was out and body stuck -- they had to do a little work to get him up and moving. But he recovered and was seemingly perfect. Since he recovered so well, the doctors did not think that a stay in the NICU was necessary and that he could go to our room and be with us.

Fast forward 2 days (and no sleep!) to our discharge day. Baby Owen had started throwing what we thought were small "tantrums" at the time. He would get very red, violently arch his back, stiffen his limbs and let out a shriek unlike any baby cry you've ever heard. We're new parents. For all we knew this could just simply be what we signed up for by choosing to become parents. These episodes weren't happening very often at that time and when we asked about them, the doctors thought that it was just newborn baby behavior. As it turns out, it was much more.

We took him home that day, Saturday December 14, 2013 -- our original due date. His "tantrums" continued and by Sunday they were happening a lot more frequently. He spent the day Sunday shrieking and it was almost impossible to soothe him. By our Monday morning follow up appointment, he was having them about every 3 minutes. As soon as the doctor noticed the weird movements he was making, she got a second opinion and then sent us to the ER in Children's Hospital. Luckily, his doctors office and our home are both 2 blocks away from Children's and were able to get there immediately.

Once getting there, we were seen right away. After a few minutes of being in our ER room, the doctor and nurses came in and as soon as the nurse picked Baby Owen up, he went blue. After working on him, he recovered but was immediately admitted into the NICU for seizure like activity. The first thing they did was a head ultrasound of his "soft spot" to see if there was anything out of the ordinary they might be able to pick up before doing an MRI. And so the heartbreak began.

They were able to see a large brain hemorrhage on the ultrasound. They ordered an MRI for that evening so that they could understand as much as possible about it. He was started on Phenobarbital immediately to decrease the seizures - which would sedate him for the majority of the following days. They also had him on and off of the EEG machine to monitor the seizures activity.

On Tuesday, we had our meetings with the doctors regarding the MRI findings. The medical wording for what has happened to Baby O is a "Grade 4 intraventricular hemorrhage and bilateral thalamic hemorrhagic infarction." What this means is that Baby Owen has suffered a large brain hemorrhage (clotting and bleeding) which has devastated his thalamus, your brain's sensory switchboard filtering your life functions. It's primary role is to gate and otherwise modulate the flow of information to cortex. For example, visual information from the retina is not sent directly to the visual cortex but instead is relayed through the thalamus. It also receives auditory, somatosensory and motor signals. 

Since the devastation is so large, they can almost say for certain that he will never walk, talk or maybe never eat anything more than formula. Their experience with similar cases in the past tell them that around 9-12 months, Baby Owen will not be able to take in enough calories to support his growth, nor will he be interested in doing so. This is just what they think will happen. There is no way to tell what his outcome will be for certain -- every baby is different and babies are extremely resilient. 

On top of that bad news, his neurologist also believed that his gag reflex would not return, which would prevent him from eating once he was no longer sedated from the medicine. Without a gag reflex, he would not protect his airways and would aspirate. Owen and I were told to prepare for the strong possibility of losing him by the end of the week. The week before Christmas.

However, the following day as Owen and I were returning to Baby O's room from the cafeteria, we walked in on the neurologist testing out O3's gag reflex -- suddenly it was back. And it was getting stronger. We were told we could try feeding him an extremely small amount later in the day, but with the chance of him aspirating during the feeding. You can only imagine how confused and excited we were at the same time. With the help of our amazing nurse, we offered him just 5CC's of breastmilk from a bottle and guess what? He drank it perfectly (with both sets of grandparents standing by and cheering him on!) Through the next few days, we increased his feedings and before we knew it, it was up to taking 1-2 oz each time. 

Through all of the chaos and excitement with being able to feed him, Baby Owen was taken on and off the EEG machine twice. The machine did not pick up any seizures after placing him on phenobarbital - which is definitely a good thing. However, it's important to know that the seizures are a result of his brain injury and he will take them for the rest of his life. 

So where do we go from here? Day by day is the only way to do it. Yes, it's very hard to think of who we thought he'd be, where we thought he'd go, or all of the talks we had before he was born about the sports he'd maybe play or if he'd run triathlons with his strong Daddy -- but we're on a new path now. One that is filled with so much love and appreciation for each moment we have him here with us. If you've never heard of the short little inspirational story called "Welcome to Holland," please take a minute and read it below. Also, share it with anyone you know could benefit from it. I think I read this 50 times a day the week we were in the NICU and continue to read it a few times a day since. It has been such a help in accepting our situation. And Holland really is quite lovely. 


We will continue to update on his appointments, development and the many adventures we will be taking him on. We now have a home nurse twice a week and will be starting with a developmental team this month. We can only hope for the best and continue to pray and ask for prayers for our sweet little superhero.

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned. And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.