Ethan May Have Joubert Syndrome

Ethan about to go to
school!

So... remember a few posts back when I said we were waiting on the MRI results for Joubert? Remember how I said we really, really did not want Ethan to have Joubert? Well, we sort of got the results back.

What does "sort of" mean?

There is one key element they look for in an MRI called the Molar Tooth indicator, which is the final verdirct in Joubert testing. Unfortunately, several doctors reviewed it and his MRI (which was taken when he was 2 days old) was unclear. Therefore, they cannot definitively give us a yes or no answer.

Not Ethan's MRI, this was a sample
taken to show how they check for JS

However - there are several of other abnormalities in the brain that Ethan has that are linked to a Joubert
diagnosis. For those who geek out, this is the medical jargon sent to us that we're still piecing together: He does have cerebellar vermis hypoplasia, dysplasia (abnormal shape of the top of his cerebellum), and an abnormal configuration of his 4^th ventricle consistent with abnormal orientation of his superior cerebellar peduncles.  These findings are all seen in patients with Joubert syndrome.

At this point we have been advised to begin treating Ethan as though he does have Joubert Syndrome, which essentially mostly means Physical and Occupational therapy, which Ethan is already in.

What the heck is Joubert Syndrome?!

According to the Joubert Syndrom and Related Disorders Foundation, "Individuals diagnosed with JS have an absence or underdevelopment of part of the brain called the cerebellar vermis which controls balance and coordination."

What does Joubert affect?

Like Autism, Joubert has a spectrum ranging from mild to severe. Here are some of the things we can expect if Ethan truly has Joubert:

• Hypotonia - check, we know about this
• Eye movement issues - check, we know about OMA
• Impaired coordination
• Intellectual disabilities which can range from mild to moderate are pretty typical, but intellectual abilities can range from normal to severely disabled
• Failure for the body to properly flush the kidneys and the liver

See the complete Fact Sheet:
http://www.jsrdf.org/PDF/Joubert_Syndrome_Fact_Sheet_06-03-13.pdf

What are the next steps for Ethan?

1. We have begun the paperwork to get Ethan tested by a geneticist, because of the range its important to know which specific genes were mutated, causing the JS. Note: The unfortunate thing about genetics testing is that it takes a long time, AND its not 100%. If he received negative results, that may mean the test didn't take and not necessarily that he doesn't have anything. However, my understanding is that positive results are accurate. Go figure... 
2. We are enrolling Ethan in the University of Washington Joubert Syndrom Study. These are the folks that are reading his current MRI and suggested we get a new one. Here is their link: http://depts.washington.edu/joubert/joubertsyndrome.php
3. We will schedule another MRI for Ethan, which scares me because they have to sedate him
4. We will get his liver and kidneys tested

What are the next steps for Terry and I?

Ethan playing in his
jumper after eating 

1. Cry, freak out, be sad, be angry, throw a pity party for ourselves and our son; mourn the loss once again of the vision of what we thought having a child would be like. 

After that...

1. Terry and I will get tested by a geneticist to see if we are affected or unaffected carriers of the gene; we both have to have the recessive gene but the level in which we have it will make a difference in the likelihood future children will have this as well. At this point the likelihood could be as high as 1 in 4... eeks..
2. Just continue to be strong for our beautiful son and for each other

And we have to remember - he may not have JS afterall. The chances are just really, really high right now. And if he does have it, he may have a mild case. I am sad also because I thought we were close to having everything figured out, but we're not - we're far from it. The journey continues.

How the Diagnosis of OMA affected Terry and I

Receiving the diagnosis of OMA (Ocular Motor Apraxia) was wrought with very mixed emotions. Prior to the diagnosis I knew something was wrong. Ethan wasn’t engaging with us – he wasn’t reaching for toys, he wasn’t looking at us or looking at other people.  I hate to admit this, but I began fearing going out in public with him. People can be horrifically abrasive and judgmental – I literally had strangers AND good friends alike wave their hands in his face, snap their fingers in his face, clap their hands in his face, all in vain attempts to get his attention. I was embarrassed because it was only further confirming my fears and I was angry that people would be so unremittingly rude.

I was also afraid to hang out with close friends who had kids themselves because I felt like with Ethan’s obvious delays, especially when sitting (or laying) next to my friends’ fat and happy babies, it was more like a giant neon sign pointing out my son’s condition. And that really only made me feel so much worse. I needed companionship and support, but I started really becoming more of a recluse for a while. 

And then I started back to work, which was devastating for me. Terry stays home with our son part time and part time we have him in a lovely, lovely daycare.  At work people were gushing, asking for pictures, asking me all about it… but I could barely talk about him.  I wanted to say all positive things about him, but it was clouded over by how scared I was that things were really, really bad.

Our whole family -
doggie included

It really wasn’t until I received the diagnosis that I could catch my breath a little. At least I had something that felt tangible. There was a picture to look at it. There were milestones to meet. There were steps to follow. Don’t get me wrong – I cried for about 2 solid days and buried my brain in online research… for better or for worse. I read forum posts, blog posts, research papers, and I joined a Facebook group for people or parents of people with OMA. Some of what I read made me feel truly inspired, and some made my heart break so profoundly. The long and short of it is that OMA and Hypotonia are certainly not the worst things in the world, but they’re not nothing. They’re challenging. It’s going to be hard.

So how do I feel now?

Honestly, I am pissed off.  I am angry. First off, I am angry for myself. Everyone around me has been having kids like crazy, as if a memo to procreate was sent out to everyone and somehow missed my inbox. All the babies around me are happy, healthy and it is so hard to be one person whose precious little guy has challenges. I am the only one who has to take my son to a geneticist. I am the only one who has to take my son to physical and occupational therapy. I am the only whose son won’t look us in the face or reach to be picked up…  and it makes me mad because that is all that I have wanted for so, so long. And I know life isn’t fair, but really… this was the one time it should have been.

And I’m angry for Ethan. I’m mad that life is going to be challenging for him. I’m mad that reading may prove to be tiring for him. I’m mad that he’s going to have to work harder than other people around him to do the same basic things. I’m mad that he may get bullied (and I will turn into one crazy Mama Bear if I ever see that happening…). I’m mad that he may not be able to play all the sports he wants to play. I want everything in life to be amazing for my son, and I’m mad that I can’t make it be easier for him.


But you know how else I feel? Joyous. Grateful. In love. In awe. And Charmed… Ethan is one of the most charming lovable babies I have ever known. Everyone who meets him takes an immediate shine to him, and everyone who knows what he’s going through asks how they can help. He is going to have a way with people, I can tell. He is a Pisces after all… He is so quick to learn new things, and he loves to absorb, to discover and to try. I am so proud of him every day. Wherever we end up after all this craziness, I know I am going to be so proud of the man he is going to become.

Ethan's 6 Month Photos - He's a Charmer! :-)

How does Terry feel?

I have never been able to sit down and get him to write for this blog... but I will say this about Terry - he's an absorber. He absorbs all that is going on around him. He's not quick to react. He doesn't blow up or fall apart. He doesn't brush things off. He lets me run through my range of emotions as he waits for game-plan we'll eventually put together. He's so smart and so kind. He does let me be the sort of front-runner, the planner and the researcher. I think mostly he trusts that I will keep the ball moving forward and in the right direction. But I don't actually do anything without thinking it all through with him. We're a team. And, quite frankly, we're a good team.


So – we’re going to be ok. Ethan going to grow and develop at his own pace. And Terry and I are going to do everything we can to be there for him; to remove all the obstacles within our control; to encourage him and always make sure he feels secure, confident and loved.

Our unique little family

Lastly, I want to make sure I don’t get caught up meeting the milestones and miss the moments. Before all this, I really had one month of just enjoying my baby. If you think about the timeline: he almost died at birth, he was in the NICU for 7 days and by his 6th week I already had the feeling something was wrong.  On top of the developmental delays Ethan was so fussy, he was really underweight and on reflux medication – it felt like I could never catch a break with him. I rarely just sat and played him, basking in his baby company. Because of that I completely missed out on just enjoying my little tiny man get bigger and bigger. I know every parent goes through this on some level… but now that I have a sort of “handle” on things – I am going to work hard to enjoy all the little moments. It’ll go quickly – whether I’m paying close attention or not. Might as well be as present as possible. :-)

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?

Where We Started and Where We Are Now

Terry & I in some grass

As I sit here less than 24 hours before the birth of our son I cannot help but ruminate on where we were when he hatched this whole crazy plan and where we are now, collectively and as individuals.

I'll warn you this is a bit of a brag session... but well earned - especially for Terry. He took the bull by the horns this year as they say and I'm excited to not only give a little spotlight to his accomplishments but I'm also so excited to see where the next year - and all the years thereafter take us.

So I'll start with Terry (or the artist formerly known as Baby Daddy). These are all of the accomplishments he's made in his life since Ethan's conception in June of 2012:

• He received his Associates degree!! 
• We figured out his plan to earn a Bachelors in Mechanical Engineering and he's in school right now taking his prerequisites. We're going to work hard to make sure that even though we're going to be tired and stressed we still make time for him to study.
• He finally bought a new car - a nice reliable Nissan Versa. I told him its the perfect "I'm a new dad/college student" car. (This was a requirement as I had also told him there was no way he would be carrying the baby around in his old car - a 1987 Nissan Z.)
• This may be a touch personal - but Terry got some dental work completed that was overdue - and he looks amazing!! He flashes a sparkling white smile now and he's more handsome than ever. :-)
• He renovated this condo of ours and it is so beautiful. He poured so much love and sweat into this house. We can't wait to bring our baby home! 

So what's next for Terry? 

• Once the baby is born and we have an idea of what we're in for we're going to start looking at entry level engineering internship-type programs that he can do while he's in school. 
• Ideally Terry would like to get into UC Irvine. They have a direct transfer program for students with above a set GPA. We're working hard to meet that. 
• Find a job closer to Long Beach that ends prior to 2am. Right now he commutes to Santa Ana in the evenings... we're not loving that. 

Beautiful West LA behind us...

Where was I nine long months ago?

• My biggest hurdle was emotional - finally healing after over half a decade of bad relationships... Terry was instrumental in helping with that. 
• I got a new job - working for The Portal Group as a Sr. Project Manager. The job came with a raise, a shorter commute, shorter hours and stability. I miss my Dustland folks but this was a good move for me considering where I am in life. 
• I finally figured out the Phoenix property mess - got a reputable property manager and managed to get three new tenants. This property is doing much better now. 
• Moved two tenants into my Long Beach 4-plex. They are awesome and things are working out well! (knock on wood!)
• Completed my first Life Coaching consultation - two fabulous women who are starting a match-making service. After one meeting and a carefully constructed plan these ladies just hit the ground running. I can't wait to do more of these!
• I bought our new condo and moved in just after Thanksgiving. I call it my first real Big Kid home. Its been A LOT of friggin' work but as I mentioned above we're so proud of it. And I love the way Terry describes it: It is my condo, but its our home. :-)



My new mommy car - a 2008 Kia Rondo

• I bought a new car! No more little zippy SanDeE. When I realized I couldn't fit a stroller in the hatchback I sold her to a nice family and bought a 2008 Kia Rondo. It's not a sexy car by any stretch of anybody's imagination - but it met all my criteria: 2008 or newer, only 30,000 miles, decent-ish gas mileage, still looked new and clean, under $10,000 and could fit all of our stuff. Trust me - this was not easy to find! We named her Judith (Judy for short). My Mommy Car!

So what's next for me?

• Well... have this baby and get started on being an awesome mom 
• I want to finish my Real Estate License... I was so close but just took on too much and had to let a few things go
• Complete another few life coaching consultations... I really love helping people move forward with their ideas and plans!
• Get back my pre-preggy body back... I think Kettlebells and Spin classes are going to be my plan de jour. 
• Get back to work and keep moving my projects forward (and maybe eventually work for myself... I think that's always been the plan).

Reading The Richest Man
in Babylon to baby Ethan
**Dedicate to my Pops**

Above all else we want to be amazing parents! We want little Ethan to know that he is super duper loved, that he has a whole foundation of people that have his back and are committed to his success in whatever he strives to do, we want him to know that he is accepted for who he is as he navigates through this crazy beautiful world of ours, we want him to know that he can take risks because if he fails we'll be here to catch him and if he succeeds we'll be there cheering him on, we want him to always feel secure about himself and his dreams - just like our parents did for us. 

Thank you everyone for taking this fun journey with us. Next time I post it will be a picture of our little man! That's when the fun really begins! Much love and many blessings!

~Kat and Terry

Being Single versus Being Alone

Terry and I prepping the baby's room

I am obviously an advocate of doing what needs to be done in life. I am an advocate of taking charge of those things that are in your control (since so few things are in life). I an advocate of looking at a situation for what it is and recognizing that if you cannot change the situation - you need to change yourself or remove yourself from it. I believe this true with respect to relationships, your work life, with friendships,  and of course I believe this is true with motherhood as well.

So at the age of 34 I decided that I would not wait for Prince Charming...  I decided that I would be a single mother, either via a co-parenting agreement or via a sperm donor. As luck would have it I found a wonderful co-parent and that became a story unto itself. But I did have two donors picked out via a credible sperm bank and I had my doctor prepared that he would be doing artificial insemination. One way or the other this was happening!

You know all of this about me - so what's the point?! The point is that having a wonderful co-parent who ended up becoming my boyfriend (again) made it glaringly obvious to me what I would have missed had I done the sperm donor route - Companionship.

What do I mean by companionship specifically? 

Two of my besties at my baby shower

In this context I am not merely referring to a couple-type-relationship, but I mean close relationships with friends and family as well.  The kind of in-your-face, sometimes-annoying, always together closeness. The kind of closeness that affords itself an expectation of companionship. And the key word there is "expectation". It can't be a favor. When you're very close with someone you develop a deep level of comfort which comes with an inherent expectation that they will be there for you.  This is a good thing! I have this with friends and I have this with family. The only problem I faced - I don't have it close by!

I moved to LA 12 years ago and all of my childhood friends and most of family live in Northern California. The friends that I do have in LA are so spread out (because LA is friggin' huge!!). I don't have that "lives just down the street and we hang out a few days/nights per week" type of companionship that you see in shows like Friends or How I Met Your Mother. Not because I don't have friends, but because of the distance and the nature of what is going on in our lives. Some of my friends have three babies of their own. Some work crazy hours. Some are going back to college full time. And when you throw 30+ miles in the mix its really hard to develop that everyday level of companionship. And when you don't have that everyday level of companionship with someone that's when you go from being a single parent-to-be, to being an alone parent-to-be.

So what is it that a companion would be expected to do?

My Ma and My Step-Ma
My two NorCal Advocates! 

• Go to ultrasounds and doctors appointments with you
• Research and read the books with you 
• Track the weekly/monthly progress with you
• Make or bring you food when you're too tired to do anything
• Eat the food you make when you suddenly have a desire to bake every recipe you read
• Cook with you!
• Laugh at all the random weirdness that goes along with be pregnant
• Watch movies with you on a Saturday night instead of heading out to a party or the bars... because you don't do that anymore
• Answer the phone when you call (and you call often) because you started crying at work for no reason, or you felt a kick for the first time, or you're suddenly paranoid you made a grave mistake because you ate something you shouldn't have
• Go the gym with you (if thats your thing) or do prenatal home workouts with you, or at least have them help you stick to your prenatal workout goals
• Go with you to Labor and Delivery if something suddenly doesn't feel right
• Indulge in all the fun shopping experiences - from Baby Gap, to Target, to baby consignment shops and everything in between!
• Delight in the arts and crafts of decorating the baby's room
• Most importantly - just be there a couple times a week to make sure you as the single mom-to-be are taking care of yourself!

One of my SoCal besties
Ugly Sweater Party at 6 months preggers

And this is just the pregnancy part! I can't imagine experiencing all of the joys, fears, ups, downs, smiles, tears, laughter, milestones and set-backs of raising a child without companionship. Without someone who recognizes the hundreds of different expressions and smiles like you do, who delights with you when your baby laughs out loud, feels pride with you when he can hold his own head up, learns to crawl and to walk. And who will do all of the bullet points above with you even after the baby is born!

So here is my advice

If you don't have someone or a few someones close-by who can be that comfortable companion during your pregnancy and even more so, after your bundle of joy has arrived, then move closer to them. I know this sounds extreme, but without Terry I genuinely would have felt pretty darn alone here in this giant spread out city of ours. It can sound trivial but its not. Its a very weighted down feeling. 

If you can't move then get pro-active and join a single mothers group, or even start a single mothers group! Start working hard to cultivate the local friendships you have into true companionships.

Next Blog Post: Final post before Ethan arrives - Where We Started and Where We Are Now!

We finally have a name!

This Friday March 8th at 7:30am we will welcome the arrival of (drum roll please...)

Ethan Jay McCullough-Byrne 

The first name was easy - the vote was clear that Ethan was the favorite first name and we just love it. You have good taste! :-)

The second name we chose for several reasons:

1. Its my dad's middle name (Stuart Jay McCullough)
2. Jay Haley, my Great Uncle, was a member of my family who I've always found to be very interesting. His intro on Wikipedia describes him as:  "...one of the founding figures of brief and family therapy in general and of the strategic model of psychotherapy..." (http://en.wikipedia.org/wiki/Jay_Haley) 
3. Lastly, it affords the ability to give Ethan a nickname (since Ethan doesn't lend itself well to one): E.J. My dad loved the idea of this nickname so we're glad this middle name can make that happen. 

Not yet! Wait until March 8th!!

The last name was a different story

Yep - we decided to hyphenate. I believe Terry always expected that we would hyphenate - and in truth this was a very good compromise on his behalf since typically the child would take the fathers last name. We're anything but typical.

Guess how much I love you?
This much!

The overwhelming majority of those who commented, sent me emails and chatted with me in person preferred that Byrne be the middle name and McCullough be the last name. In the beginning I would have agreed - but my feeling on this changed. Its not just that Terry and I are a couple, its that he is truly as excited as I am, if not more so sometimes, about the birth of his son. He has been a team player in this since the start and I no longer think of this as my baby (which I admit I did in the beginning), but our baby. And because of that I want this baby to have our name.

Why McCullough first?

No big reason other than how it sounds. Byrne-McCullough almost sounds a bit mean.

But hyphenating is so long - isn't that mean to do to your child?

As opposed to naming him something like Apple, or Moon Unit, or Sunweed (sorry bros)? More and more people are hyphenating. Ethan will survive the long last name... and boy will he know his letters! 16 unique letters in his name - that's over 60% of the alphabet! We're all about education. :-)

What will you do if someday he wants just one last name?

As he gets older we're prepared for him to pick one or the other. Another thing some people do is keep both but just use one. A girlfriend of mine has a hyphenated last name and she kept it hyphenated legally, but uses just one of the last names on a day to day basis. I will try not to take it personally if he chooses Byrne.... I'll try...

Well - that's that for our baby's name. We're definitely excited to meet little EJMB!

Next Post: Single vs. Alone - there is definitely a difference!

Now that we’re a couple – how does that change the agreement?

Kat and Terry - Preggy Pic #1

This is a phenomenal question – because we’re not married the agreement remains in-tact, though we’re free to bend the rules a bit in the interim. I consider the agreement more of a co-parenting pre-nup if you will.  If we do break up, we revert to the agreement as it is written today. But even as we stay together there are elements of the agreement we still have in place.

What has changed?

• Custody – now that we’re living together obviously this is no longer a concern. We will be raising this little niblet together.
• Holidays and Activities – these will be more joint efforts now. We will go to each other’s families for the holidays and navigate the balance just like any other couple would.
• Final decisions – under the agreement there is an element under which I would have had final decision making authority with respect to names, healthcare related issues, childcare facilities, etc. This is no longer the case. Now we’re discussing things – again like a normal couple would. And of course, like a normal couple – we almost never agree!  (Ok, ok – we agree in the end but boy does it take some communication tap-dancing in the interim.)

So – what’s the same then?!

Preggy Pic #2

For the time being I will still bear the sole financial responsibility for little Ethan, including the cost of giving birth (and holy jeez these are outrageous costs!!), health insurance, childcare, education savings funds, diaper service, mortgage/utilities, and so on and so on.

When Terry and I made this agreement we knew he wasn't in a financially comfortable place because he was going back to school and working part time as a bartender. He makes enough money to cover his own bills but there is not a lot extra right now, especially for the overwhelming costs this little baby is racking up. This arrangement was always based on me being able to cover all of the costs. Our expectation, of course, is that this will not always be the case. Terry is looking for a job closer to Long Beach that has more consistent hours and more consistent pay. And when he does graduate college with an engineering degree he will definitely be stepping in financially - which is good because we might have our second child by then. (Yes, we’re already talking about it.)

Some people have had some negative things to say about the financial arrangement but this is the way I look at it:

1. There are many single income families, but the convention is that the man is the breadwinner. Well – to break yet another convention, that is not the case with us. Our goal is to equal out in the end, but right now we’re a healthy couple with me as the breadwinner.
2. Terry contributes so much to the comfort of our lives. He keeps our home improvement projects moving forward and it’s really only because of him that we have a place as nice as we do. I will be show all of the before and after pictures in another blog post. He does amazing work – he’s going to make some engineering firm very happy someday.
3. Time – Terry has a bit more free time so our goal is try to and supplement childcare costs with some of his free time – i.e. he’ll stay home with little Ethan one or two days a week, or several half-days.
4. My best friend – Terry really is my best friend. I wouldn't trade that for a million dollars. (I used to think I would… but I was young and dumb… now I wouldn't trade it ever.) I would have done this single, and I could have done this single, but I am so glad Terry and I are together. We make each other happy.

Preggy Pic #3

So – we have 4 days to go and we have two giant decisions still left to be made (decisions I have to be honest I truly envisioned being able to make on my own once upon a time):

• Middle and last name (now that we’re together this changes things a bit)
• Circumcision (one of us for, one of us is against… this is definitely controversial!)

 Stay tuned!

Next blog post: Single vs. Alone – something I learned starting off doing this single and being able to compare that against doing this with someone. 

Note: All of our preggy pics are courtesy of Sandee Lynn Photography. Her website will be up soon and I will make sure and update this blog as she did a wonderful job. We have many more to show! :-)