Is something wrong with Ethan?

Or... Why is Ethan always looking to the right and to the left?

Baby Ethan* - 1 month photos

People always ask me, how is Ethan? And I usually respond, “He’s amazing. He’s doing great. Getting bigger every day. He’s such a love. We’re super happy.” 

However, what I wanted to say was, “I don’t know! I’m freaking out! He won’t look at us. He won’t reach for toys. He can’t really do much of anything. He’s like a blob. And everyone is telling me he’ll grow out of it and he’s fine – but he’s not fine. Not compared to other babies. I know he’s not fine and it’s terrifying me!”

I talked about my fears only to a small subset of people. Some of them told me there was nothing to worry about. Some of them agreed it may be time to get Ethan assessed. Terry and I agreed, which was ultimately the most important thing. It scared us both. This whole crazy plan to have a baby sort of took off in spite of us, which led us to believe this was all “meant to be”. But if it was meant to be, why was it feeling so broken? 

At Ethan’s 4 month doctor’s appointment his pediatrician finally wrote prescriptions to have his eyes checked and to have him assessed by a pediatric developmental center. 

Diagnosis # 1

Baby Ethan  with OMA -
looking to the right

We took Ethan to see a Pediatric Ophthalmologist. There was good news and there was bad news. Ethan has good vision. That was the good news. The bad news, Ethan has Ocular Motor Apraxia (OMA), which essentially means he cannot control his voluntary eye movement. 

Ok, this may not be such a bad thing… right?

What are the short term affects?

• Ethan will soon develop head thrusts, this will be his attempt to begin controlling his eye movement and this will continue for anywhere from 2- 10 years. (Please let it stop before Jr. High)
• Physical delays are extremely common. On average children with OMA begin crawling at 1 year and walking closer to 2 years. 
• Some children experience speech delays as well, though this isn’t directly related to OMA, but rather another shared symptom of what may have caused OMA in the first place
• Reading comprehension can be delayed 
• Some children experience learning difficulties 

What are the long term affects?

• In school Ethan may need longer to take tests, especially reading comprehension tests. Overall, he should NOT need special education type classes. His intellect itself should not be affected, just the time it takes to finish reading. 
• Ethan may have difficulty with sports such as soccer or football, where there is a lot of action happening on all sides. Children with OMA tend to do better at very linear sports such as baseball, swimming, wrestling, etc. As long as we can go hiking with him!
• Children with OMA tend to gravitate towards computers games and reading on the screen because reading the fixed width on the screen is easier for their eyes. 
• By the time Ethan is an adult he will have adjusted to his condition, and lead an otherwise normal life. Again, computers will be a good career for him because of the ease in working on the screen.  He will be able to drive, go to college, get a job, etc. 

How did Ethan get OMA?

We don’t know this for sure. We found out recently that Terry’s sister had OMA when she was a baby, but she seems completely fine now. She may have had a mild case. Because of the connection to Ethan’s immediate family we feel it may be genetic, however it can also be caused by a number of different factors. And it could even be genes triggered by outside forces. 

Is there a cure for OMA?

Nope. It’s so rare that it doesn’t even have the attention or funding. And I sort of understand that. OMA is livable whereas other conditions can be life threatening. However, it does mean life is going to be a little bit more challenging than we had otherwise anticipated.

Diagnosis #2

Ethan and I at Disneyland,
he's looking right again

The day Ethan turned 5 months old we had him assessed by the Stramski Developmental Center. He was diagnosed with severe Hypotonia. Hypotonia means decreased muscle tone. Even at rest, most people have tone, or tension, in their muscles. Basically, it means Ethan is all squishy and floppy, and he has trouble holding his head up (which he might have anyway because his head is huge!). 

Note: This is not the same as having decreased strength – as Ethan is actually quite strong. Low tone means a lessened ability to contract or co-contract muscles. Reaching up or reaching for toys, holding on to toys, pushing himself up, etc. are all very difficult for Ethan. 

We had him assessed using the common Bayley III assessment method. It was somewhat painful to watch. For fine motor he's 80% delayed, for gross motor he's 47% delayed and for receptive language he's 90% delayed. Thankfully, cognitively he was only a few weeks behind, which was a relief. 

Is there a cure for this at least?!

From what I have read the cures are largely dependent on the underlying cause of the Hypotonia. However, from all the message boards, chat rooms, blogs, and Facebook pages I have joined – most parents said that with early intervention their children’s score improved incredibly quickly. 

In fact, the woman who did Ethan’s assessment gave us a set of exercises to do at home with him. Terry and I make sure he does all of them 2 -3 times per day.  In just two weeks he’s sitting up better in my lap, beginning to reach for toys, holding his head up stronger, and he’s able to roll over from his stomach to his back now!

So what’s next?

Taking Ethan to the
Geneticist!

1. After we had Ethan assessed we made an appointment with a Geneticist  to have all of us evaluated. That was a very positive meeting. They definitely confirmed OMA and Hypotonia, but didn’t feel the need at this point to do further genetics testing.
2. We sent Ethan’s MRI to the University of Washington’s Joubert Study.  Joubert Syndrome is a super rare genetic disorder that affects the cerebellum, an area of the brain that controls balance and coordination. In some cases Joubert can cause liver and kidney disease and children with Joubert can also be severely mentally delayed. We DO NOT want Ethan to test positive for Joubert.  If Ethan does indeed have Joubert, we will go back to the Geneticist for additional testing to find out where Ethan is on the spectrum. Luckily, the Geneticists did not feel like Ethan had Joubert based on his cognitive abilities and the advancement in just two weeks of the home therapy Terry and I were doing.
3. Ethan begins a rigorous twice weekly Pediatric Physical and Occupational Therapy regiment beginning next week.   Early intervention is key! We will repeat the Bayley III Assessment at 11 months of age to see how he is improving. 
4. We will go back in 6 months to see the Ophthalmologist, have him repeat the Bayley III Assessment, and re-review with the Geneticist.
5. When Ethan is Kindergarten we will likely begin therapy for his eyes as well. This will not be to cure the OMA but to help him with simple workarounds to make life easier.

What is the difference between Pediatric Physical and Occupational Therapy?

Working on our tummy time!

(Only because a few people asked me this and at first I didn't know how to answer). Both disciplines look at muscle tone, strength and flexibility, but in different ways. For OT they focus on fine motor skills, using hands and fingers. They also deal with thinking skills and sensory skills, such as emotional and behavioral reactions.  PT focuses on mobility and gross motor skills – so more crawling, standing, tummy time, etc. Both are very important for a little lad as behind as Ethan. 

Outstanding Diagnoses’

There are several additional diagnoses’ for which we are either waiting for feedback or waiting to perform the diagnosis based on age:

• The results of the Joubert Syndrome MRI review – fingers crossed that he doesn’t have it
• The Geneticist did recommend we do an ultrasound to check Ethan’s kidneys – although at this point he’s fairly confident that they will be ok.  
• Cerebral Palsy test in a few months – though we don’t think he has this anymore because kids with CP are more rigid and he’s just floppy
• Autism test at 12 months. We’re feeling ok about this because Ethan does laugh, babble, anticipate his bottle and food. He does interact with us. He doesn’t look at us well – but that’s most likely a result of the OMA. 

Whole family at Disneyland, Ethan
looking to the right again!

So – that’s where we are in a nutshell. I will talk more about how this has really affected us in the next blog post. I know I just threw a lot of facts and information at you in this blog – but here’s a taste of what we’ve been sifting through ourselves these past few months. I won’t lie – it’s been really hard. But like I handle all things in life, I’m taking this just one little step a time. Thank goodness for Terry!

*Picture courtesy of Sandee Lynn Photography

7 Days in the NICU

Our tough journey did not end for Ethan after he began breathing again in the delivery room… it remained challenging for several days.

Day 1 – Oxygen Levels up

Terry with Ethan - Day 1 of
the  NICU

During the first 24 hours Ethan was having trouble keeping his blood oxygen levels in a safe range – they had him hooked up to oxygen monitors and oxygen. He had an IV to keep his fluid levels up and to administer antibiotics in case it was a bacterial infection that had caused his low oxygen levels. He was given a little colostrum so he would start getting the nutrients he needed. He was in a high risk room with babies having breathing troubles.

Day 2 – Swelling in his head

Holding Baby Ethan -
Day 2

It was during day 2 that the doctor noticed that Ethan’s fontanel had swelling in it. She told us this could be any number of things, from a bacterial infection to a virus, to fluid in his brain. So the tests began. He was already being tested for a bacterial infection, so the next was to check for fluid in the brain. He was scheduled for a CT Scan. The CT Scan was negative. He was scheduled for an MRI. The MRI showed no fluid in his brain.

His Oxygen levels steadied and remained in the safe range for long enough to remove his oxygen.  I was told in the NICU they woke, changed and fed him every three hours 24 hours a day. I was there most of the day anyway. Even at the midnight, 3am and 6am feeding… I didn’t miss one!

Day 3 – Spinal Tap

Poor little NICU baby - so many
tests!

The last thing to test for, since the CT Scan, the MRI and the bacteria tests all came back negative was for a virus. This was hard for me, but we signed off on the Spinal Tap. To this day I don’t know if that was a good decision or not. The Spinal Tap came back negative.

Ethan was the fussiest baby in the NICU – he cried unless he was being held and rocked. Between the CPR, the swelling in his head, and the IVs, et al… I’d be fussy too! Apparently this was another “Cause for concern.” The doctor decided she needed to bring in an Occupational Therapist to assess him.

At the end of day 3, suddenly, just like that, the swelling started going down. Ethan was moved to a slightly lower risk room of the NICU, which essentially meant less nurses per baby. For me it meant a step in the right direction. We were given a goal – to feed Ethan 5ml and then to raise it by 5 ml every three hours until we got to 40. You know how I love goals… apparently Ethan does too. :-)

Day 4 – No more tests

Sleeping NICU baby

At this point Terry and I started feeling like Ethan was really getting better. He was eating better and better. I was really starting to feel pretty confident we’d be going home soon.  The Doctor was concerned because there was no “cause” for his ailments. At the time I didn’t really care – he was getting better. Now I think I care a little more… but I’ll talk more about that in Post #4.

They moved Ethan to the “Healthy Baby” NICU… the place where most of the babies go right before they’re discharged. We loved this NICU – we had a little section all to ourselves. Ethan was given a new goal – eat 40ml every 3 hours. Has anyone ever tried to make a newborn do exactly what you want him to do? This goal was attainable, but frustrating! Sometimes he would eat like a rockstar, and sometimes he would barely get through 10 ml. It sounds silly now, but it was so incredibly nerve racking. Our ability to take our son home was completely 100% based on his ability to complete this task.

And then someone from Social Services came to talk to us, which we were told was just procedure. I’m sure Terry and I were one of her better visits that day. We may be unconventional but we’re pretty darn normal. Still, it was unnerving – having someone who has the ability to exert control over decisions regarding your family asking such personal questions.

Little man doing better...
just want to take him home!

At this point I was getting kind of annoyed – he was doing so well, I just wanted to take him home. I was tired of sticking to this schedule, I was tired of asking permission to take my son out of his pod, I was tired of being told how to feed him, change him, rock him… I was tired of being under the microscope. I was ready to start feeling like a “mom”…

To make matters worse, this was the day the Occupational therapist came to assess Ethan’s “mood”, if you will. (How does a 4 day old have a mood?!) However, she came just 20 minutes after they moved his IV for the third time! Now he’d had his IV moved from one hand to the other, and since he was out of hands they moved it to his foot! He was a basket case, fussy and crying. The Occupational Therapist began writing up her report and I lost it. I told her it was completely unreasonable to assess my son on his behavior such a short time after enduring more pain. She agreed to come and do a follow-up assessment later that afternoon. She did, and as luck would have it he was as pleasant as pie. Finally I had a win!

I was discharged myself this day, which freaked me out to be going home and leaving Ethan, but we were able to stay for 2 additional nights in the Children’s Hospital overnight rooms for families.

Day 5 – New NICU, New Challenges

Little sleeping baby boy!

Ethan would sometimes do well and sometimes miss the mark on his 40ml per 3 hour feeding schedule which again was frustrating. Plus, while all the nurses were wonderful, they were all different! One would tell us it would be better if we let the nurses do the feedings. Another told us we wouldn’t be able to take him home if we couldn’t do it ourselves. One told us we should use a smaller nipple size for the bottles. Then we found out we couldn’t take him home if he wasn’t eating out of the bigger nipple size bottle. One nurse told us we could take him out of the pod ourselves. Another told us not to touch anything. We felt a little whiplashed!

JUST TELL ME WHAT TO DO! I’LL DO IT. I JUST WANT TO TAKE MY SON HOME!!

And then Ethan had his circumcision… well guess what this meant? He was fussy, in pain and didn’t feel like eating. They told us it would be at the minimum another 24 hours because he hadn’t met his quotas.

But – Ethan’s IVs were finally removed and he was given an open Pod to sleep in. We were so close!

Little Luminescent Eyes! Already he had endured so much!

I think this was the night I finally let the pain, fear, joy, anger, frustration and lack of sleep take its toll on me. I had a nervous breakdown in our little family room and bless Terry’s heart – he just held me while I cried. This is sort of how I operate… I run myself past the point of exhaustion, I completely fall apart, and then I’m all better – ready to hit it again. Terry, as usual, was my rock!

Day 6 - Smooth Sailing

Midnight feeding - so close
to going home!

This was the day I knew everything was going to be ok. The Occupational Therapist came to visit Ethan
again and he was just a doll. He ate like a champion. He slept great. We finally got to dress him in his baby clothes… but everything was sooo big on him!! He was just a little tiny thing weighing only 6lbs 7oz.

Unfortunately we weren’t able to stay in the hospital for anymore nights… we had to spend the night at home. It was so hard. But actually, finally sleeping in my own bed was just what the doctor ordered.

Day 7 – Ethan Comes Home!

Dressed and ready to go!

I spent this entire morning treading carefully on eggshells… I didn’t want to say or do one tiny thing that might make the doctor feel that Ethan needed to stay for more time. She was hesitant to let him come home because we never did find out what caused both the low oxygen levels and the swelling in his head. Like I said, at the time I was content to accept it as “one of those things” and just get him home!

We watched a video on infant CPR and the Heimlich. We took a test and passed. We dressed our son. We filled out many, many forms. We held our breaths. We shook hands and gave hugs.

We went home and started our life together!

GOING HOME!!

One special Thank You

I do need to give a very special thank you to my mother and my stepfather, John. They spent the entire week at our condo, taking care of the dog, cleaning as needed, and bringing us food. We didn’t give one thought to what was going on back home… Terry and I had so much on our plates at that time I don’t know what we would have done if we had to think about the homestead as well. Thank you so much!! We love you!!

Next Blog - #3 So What About Terry and I?!

Future Blog Posts- Stay Tuned

#4 Why are Ethan's eyes always looking to the right or left?

What happened during delivery and how come I didn’t announce Ethan on my blog?

Hello Everyone! My my my - how long it has been! Most of my close friends and family know all of the recent goings on:

• Terry and I are still a couple 
• We had a baby boy, Ethan Jay McCullough-Byrne, born March 8, 2013, 6lbs 13oz, 19.5 inches long
• He was in the NICU for 7 days (although most don’t know exactly why)
• We’re all home now building our life together
• I went back to work at 3.5 months, and Ethan spends half his days with Terry and half at a daycare

So – why the need for a blog?!

I’m going to unveil the reasons for both taking a 5 months hiatus and the reasons I feel the need to start writing this blog now more than ever. However, I’m going to unveil it over the next four blog posts. (Four seems to be my lucky number!)

Blog Post #1 – What happened during delivery and how come I didn’t announce Ethan on my blog?

All smiles about to get
my surgery!

This is to answer some of the questions I received about why we didn’t have that big beautiful announcement plastered all over our blog. I don’t think I’ve ever been shaken to the fundamental core of my being as I was during March 8, 2013 at 8:05am. Here is the story of Ethan’s birth.

I had a cesarean. Ethan came out and was fine for about 10 seconds and then stopped breathing. We’re not entirely certain why… he coughed and then he basically went into shock and just gave-up. I figured this was normal at first – and then the whole energy in the room changed. The nurse, who had been so happy-go-lucky during pre-op switched her persona. She got very serious and made a phone call. I heard her say, “We need you down here right now.” Ethan wasn’t crying. I was completely silent – just waiting for everything to click and be ok. It didn’t. Suddenly I heard the nurse say, “Oh shit.”

At that point I completely lost it. I started crying – asking what was going on. No one answered me. I could see my Ob-Gyn’s face. He looked worried, panicked even. Then I started yelling, asking what was going on. The nurse started performing CPR. I just heard her repeating, “1 and 2 and 3 and…”. I started praying. The nurse made another phone call, “I mean I need you right now.” At this point I was hysterical. I knew what was going on… my son was being resuscitated. I was crying, praying and just saying over and over again, “please breathe baby, please breathe.” A team of people came pouring in. I don’t know what they were doing. I couldn’t see anything but there was commotion – the very specific dance of highly trained professionals working to save a very little human being.

 It’s hard to paint a picture of the scene accurately. I was still being operated on so I couldn’t see what was going on. Terry was holding my hand. He could see the operation in progress on one side and his son potentially dying on the other. No one was talking to us. No one was telling us it was going to be ok. No one was speaking at all, except for me and the nurse. She was just repeating, “1 and 2 and 3…” and I was just repeating, “Please breathe baby, please breathe.”

This lasted almost 3 full minutes. This was an eternity. It was so long, I had actually begun to mentally prepare myself for the worst. I was preparing to be told there was nothing that could be done. I was preparing myself to go back to postpartum without my son. I was preparing to walk into our nursery at home and cry alone. I was preparing to have to tell everyone that I had lost my son just minutes after he was born.

And then he breathes...

Our little son right after CPR...
but alive!

And then he started to cry. And it was like the room, which had felt like it was spinning out of control,

stopped and righted itself. It was like my heart was able to beat again. Terry muttered through stifled cries, “He’s alive, he’s breathing.” I started laughing, the only way I could release the fear which had threaded its way into every fiber of my person. And then Ethan cried louder. They wrapped him up and brought him over to us. He was so pale… he looked like a little bug. I have never been happier in entire life.

His breath was weak, so they had to take him to the NICU. Terry and I were alone while the doctor finished sewing me up. We were wheeled into recovery. They finally told us we could go to the NICU, but not me, because they couldn’t fit the gurney in there and since I had had an operation I could not get up, not even to be in a wheelchair. I told Terry to go, to be with our son. I was alone.

Wheeled by my little son,
but unable to hold him yet!

On the way to Post-partum they allowed me to be wheeled passed my son. I could not touch him or hold him yet. This was so incredibly hard for me. I was told I’d have to wait for about 8 hours and I had to be able to complete certain tasks before they would let me get up and get into a wheelchair to see my son. I told her, “If you need to me to run a marathon right now I will do it. Just tell me what to do – I have to get to the NICU.” 8 hours to the minute I was wheeled in to finally hold my amazing little man.

I will talk more about the whole NICU experience in the next post.

Finally - 8 hours later, holding
my son for the 1st time

Remembering….

Terry and I didn’t talk about what happened with Ethan for a few days. We had a new focus, making sure our son was healthy and getting him out of the NICU. But when we finally had the courage to re-group and share our individual experiences they were very much the same. It’s easy when looking back to think, it wasn’t that bad, we over-exaggerated it. But we did not. In the days following we spoke with both the nurse who saved our sons life and my Ob-Gyn – both of whom had shared that what they experienced with Ethan was very rare and incredibly frightening. Sure, some babies stop breathing when they’re born. Usually they are given oxygen, their airways clear, and they’re back breathing within seconds. We were told this was different. He flat-lined and was out of for so long. Just another minute or two and Ethan would not have made it. They would have called it.

After that, I couldn’t really think about it. I couldn’t talk about it. The faintest memory would make me cry. I pray no one has to experience their child getting CPR. So I folded up the blog. I didn’t have the energy. I posted on Facebook and I send texts to my close group of friends and family with pictures and updates. I highlighted the positive and tried to keep as much of the negative private.

And now, in true Katrina fashion I bare all – the good, the bad, the ugly, the beautiful and reality of everything we’ve faced since then. Unfortunately, like the beginning our road has continued to be filled with some pretty significant ups and downs.

Ethan's First Video!!

Next Blog Post – Blog Post #2: In the NICU and out of the NICU

Future Posts - Stay Tuned!

#3 – What About Terry and I?

#4 – Why are Ethan’s eyes always looking to the right or the left?