Our family's journey through life

flash back

Febuary 4,2008

level 3  NICU Legacy Emmanual Hospital

Was a heart wrenching unforgettable blurry day. Owain was only ten days old and  very sick.I remember sitting in a cozy recliner (Lily's chair, a sweet baby who died in this very NICU who's parents donated the chair in honor of their sweet angel)right next to my baby's elevated bed.  My nose was red and raw from the non stop tears rolling down my cheeks.I was an emotional mess. Today was suppose to be the day Mr.Owain was going to be getting his repair surgery.It was canceled again! His third scheduled surgery He was too sick. My heart sank. I had so many emotions running through my head is this it...is the unthinkable about to happen? am I finally going to get to hold my baby for the first and last time? please god let him live he is so loved let him live.please. 

The Doctors were preparing us for the worst."if his blood gases don't improve soon he will need ECMO" (ECMO lung heart bypass machine). I was in a complete fog  with tears in my eyes I  signed the yellow release form for ECMO. Please god not ECMO.Let him live.Let him be strong enough so he can have his repair surgery and heal.please. I begged to god. I am not even religious but on this day I prayed hard for a miracle. Let my Mr.Owain be a CDH survivor.

At that moment I didn't feel courageous. I was petrified that the unthinkable was about to happened. I felt hopeless. I just wanted my baby to heal.To be healthy, I wanted to be able to hold my baby and never put him down.  I wanted him to have a chance to live. I wanted to bring my baby home.This is not what I imagined motherhood would be like.Why is this happening to us?  why our baby?why?

Our prayers were answered. Owain's weak body began to get strong enough to have his repair surgery at seventeen days old.His body began to heal.He avoided ECMO.He wowed the Doctors.They couldn't be leave the 180.They stopped preparing us for the unthinkable. Now they were preparing us to bring our baby home!Owain is a CDH survivor.He beat the odds.thank you god! thank you god!

It's crazy to think of how far our little man as come and how far we have come as parents.I am so proud to be his momma. and I am at peace with this fourth unexpected surgery. Owain is no where close to being in critically condition. He is full of life.Running jumping,playing eating and making lots of bowel movements (very important when some of your bowl is poking through your diaphragm)He is doing remarkable considering.Because of that his surgery won't happen for another couple of weeks. I hate waiting but am at peace with it. This will give the Doctors more time to study Owain's case and find a better solutions.We have more time to prepare Owain for another stay in the hospital.(We have been reading him a book about a boy in the hospital.) So not looking forward to that.I would rather go to Disney Land but I am at peace with this situation.At least this time we feel more prepared than his last hospital stay at nine months old (2&3 recurrence)

Sunday February 6

We spent the early part of the day at the park. Owain loved rocking on the sea horse. After the park we played at the local toy. They have a train table that Owain  loves to play with.

Monday February 7

We went over to Papa's for dinner and Papa made Owain a special chocolate milk shake. After dinner we played hungry hungry hippo (a favorite of Owain's when were at papa's).It was the first time over since Daisy (family dog) passed away. We missed her presents. Even Owain asked "where daisy go?"

Tuesday February 8

We did our usually Tuesday thing and went to the indoor play ground.While saying goodbye to our friends Elijah and Haya both gave Owain a hug. It melted my heart.  

Wednesday February 9

Owain and I went over to our friend Julie and Eric's house for a play date the boy's had a lot of fun being little monkey's jumping on the bed. Our friend Avery and her mom were there too but it was  impossible to get a picture of three toddlers.

Thursday February 10

. Owain got a kick out of riding the bus to story time after all he is obsessed with all public transportation.Before he ever said "I love mommy or daddy" he said "I love bus"

Friday February 11

We had to take Owain to Doernbecher to get a CT scan to find out if he had another recurrence (he did) getting the CT scan was not fun at all but getting to ride the Tram twice made it all worth it.

Saturday February 12

We went over to grandma's and she had a very special Valentines for Owain. Three Thomas books!  Owain is Thomas's #1 fan. If you couldn't tell be his reaction.

Just like daddy...

Can you guess what we got to do last Friday?

While at Doernbecher Children's hospital we got to ride this....

not just once but twice.

Riding the Tram really made a difficult day into a fun day.

Especially for one terrific two year old boy.

Dr.Z ( Owain's surgeon) will be meeting with several other surgeons Monday to discuss his unique yet challenging diaphragm. Hoping with a team of surgeons brain storming,researching the best solution for our little man. Three gore tex patches aren't working. Their are other options other than gore tex maybe they will choose to use one of the following latissimus dorsi flap ,alloderm patch or use abdominal muscle to create a diaphragm or maybe some thing else. It is reassuring to know that there are other options other than gore tex. I feel confident in the team of Doctors that they will be able to find a better stronger solutions to repair his hernia so this will be his last surgery and re herenate will be a thing of the past.Once the team of Doctors have a game plan, Dr.Z will give us a call Tuesday or Wednesday to inform us of the plan. As soon as we have a date for surgery you will be the second to know.


How was Owain's recurrence discovered?
A little over two weeks ago we had a follow up with Dr.Z. He ordered Owain's last scheduled chest x ray. We got the thumbs up everything looked as though it did on Owain's last x ray back in September.It wasn't until later when Dr.Z went over his x ray he noticed that it looked like he might have another recurrence. We are so thankful that Dr.Z is a good thorough Doctor.He wanted to triple check so we took Owain for an ultra sound. Because of the uniqueness of Owain not having a spleen and a high kidney it was difficult for the radiologist and technician to determine if in fact he has another recurrence.The next day (last Friday) Owain had his third CT scan. A few short hours Dr.Z called to inform us that yes he has had another (his third) recurrence.


Is Owain in any discomfort?
No. Looking at him you would never know that he has some of his bowl poking through one of the three gore tex patches. I think the bowl might be poking through where they tied the patch around his ribs but I am not 100% sure . We will learn more next week.


Our little man has been his energetic happy self. Wresting with daddy,jumping off the couch,running the cat over with his dump truck Just being a typical two year old boy.Boys are so much fun. We are enjoying every minute of him bouncing off the walls.That is a really good sign that this recurrence is no affecting him physically. Any one that knows us know's our daily struggle with him eating well since he recovered from his viral infections a few weeks ago he has been eating pretty darn good for Owain and having plenty of BM (bowel moments) another great sign that every thing is working even though it may nor be in the correct place.


How long will his hospital stay be?
You never know. Back when Owain was diagnosed in utero (20 weeks geatation) we were told the average stay for a CDH baby is three months.When we brought him home from the NICU he was six weeks old. At nine months he had two more surgery's and he only spent six days in the hospital.You just never know. Hoping and praying that his will be a short hospital stay. With no complications,no crazy twist and turns while we board the CDH roller coaster ride,again.If I have learned anything from CDH it is to expect the unexpected. You just never flip'in know.Take one day at a time.


Is their anything that you can do?
nope. We don't need anything. If you really want to do something you could keep our little man in your prayers or send positive energy into the universe. We have appreciated every one's kind words thank you.

If there is a question you have that I have not answered please don't hesitate to ask?

For all you CDH parent's who have answered the questions on my last post. Thank you it is so great to have a nice support group of parents who know exactly what we are gong through. I personally have followed each one of your story's and your little ones have a special place in my heart.