Our family's journey through life

They weren't kidding when they say "motherhood zooms bye". Seriously I feel like just yesterday my little boy was a bald headed blue eye curious easy going never sleep through the night baby.Oh! how I miss late night early morning snuggles.I don't miss being sleep deprived though that is defiantly a plus side to my baby being a little boy.If I could I would freeze time. I get teary eyed just thinking of my baby little boy growing up and leaving for college. Sniff sniff.      

Yes, I am well aware that my baby little boy hasn't even started pre-school yet and  I am already feeling the empty nest syndrome.Crazy, I know. I love being a mommy. It's been my dream. I was that girl that secretly played dolls until the age of fourteen (ssshhh don't tell any of my peers). I want to savory every moment of watching my little boy grow into a young responsible gentlemen. sniff sniff.

Two weeks ago we  left the hospital  with a  our sweet little  boy.Six days after he endured his fourth  and longest (8hrs) surgery.On bed rest for the first three days post  op, a not so comfortable chest tube for three days an epidural,morphine, Tylenol round the clock.Bed rest. A Jack Pratt drain. Sleepless nights,watching animated show after another, ice cream,wagon rides,bubbles,coloring. We were saying good bye to the hospital. Again.Days before we anticipated.  We were stepping foot off hospital grounds with our sweet (stronger than most adults I know) warrior child wearing a lovely hospital gown courtesy of Dorenbecker Children's hospital. His left arm still in a sling. Holding his daddy's hand with his wright Owain not so gracefully jumped out of the elevator JP and all. Yes! He jumped!

 Blessed, we are.

 At home Owain continues to amaze us.After only being home for two days spending his day watching our own animated cartoon shows with Slinky and Nemo in the comfort of our living room.

We spoke with Dr.L (plastic surgeon). Great Doc. He was pleased with how little of an out put his new friend JP was putting out. He told us to come into the office that very day!It was time to say goodbye to good old JP. A week earlier than we anticipated .Owain wasn't to happy about the quick yet unpleasant process of saying goodbye to JP.He recovered quickly with some Mickey Mouse stickers.

Our boy continues to amaze us!
Blessed,We are!

Having JP out of the picture Owain continued to recover remarkably well. He spent less time in front of the t.v. Having the energy to play he helped daddy build a tent out of his old tapestry from his college days.They hid from mommy snacking on some tasty pepporin and cheese.

Blessed,We are!

By the sixth day of being home Owain no longer needed his stink'in sling.A week earlier than we anticipated.  He was back to feeling like his young energetic self.Running,jumping doing tricks (twirling while jumping) Flying like a bird. He no longer needed pain medication.He was feeling pretty darn good. Better than I did after my C-section. Truly amazing.

Amazing.That's our boy!

Ten days after leaving the hospital Owain was well enough to play at a neighborhood park. With Friends.

Our boy continues to amaze us!
Blessed, We are!

Thankfully for days like these.

Six weeks ago today Owain had his routine x-ray.

Three days later Dr.Z (surgeon) called to inform us that his x-ray looks light he might have re herniated  again!

He put a referral  for an ultra sound.

Two weeks later he finally had an ultra-sound which ultimately led to a CT scan the next day.

The Friday afternoon of the CT scan Dr.Z called to inform us yes Owain has had another recurrence.Early next      week he was going to ask the senior surgeon his input and what other options are there?

We waited and waited and waited and waited until I finally called Dr.Z office last Thursday. He was still waiting to hear from the Senior surgeon.

At this point I am super annoyed and frustrated. It's been six weeks since that x-ray, a month since the CT scan and we are still waiting for a game plan and a surgery date! The longer we wait the more concerned I am that Owain's situation will only get worse.It could be life threatening.Thankfully Owain is still doing well considering.
Making lots of BM's (bowel movement) very important when some of your bowl is poking through your diaphragm. He has been whinier than usual. I don't know if it's just teeth,being two or if his uncomfortable because he has some of his bowel poking through! Do you understand where I am coming from? or am I just not being patient enough? I feel like for the last six weeks I have been pretty darn patient but it's time to get this ball rolling before it becomes a life threatening situation!

Shortly after signing the release form a warm kind spirit Penny ( the hospital chaplain) graced us with her presents.We (family)  gathered around Owain's bed.My husband and I gentled placed our hands on our sweet boy's head.More tears streaming down my cheeks. I was trying to keep it together.It wasn't working I was a hot mess. Owain was in the middle of the circle of love.As Penny blessed him....

He kicked CDH booty not once,not twice three times already.I have full confidence he will do it again. after all he is a warrior ready for battle.

After Owain's CDH repair surgery at seventeen days old. Learning that his surgeon had to use a gore tex patch because he was missing 90% of his diaphragm on the left side. We hoped he wouldn't need a patch. We new if he needed a patch his chances of having a reherniatoin were higher. Leaving the NICU with our sweet little warrior (44 days old) that has been my biggest fear.We just got off the phone with his surgeon and it has happened again. Owain has had a recurrence for the third time! This will be his fourth surgery. I was hoping that the results of his CT scan wouldn't be this. I hate that our little man is going to have to endure another surgery. another hospital stay. With any surgery their are always complications. We learned that with his first repair surgery when his spleen bleed to death and he nearly died. The difference now is he is a happy go lucky little boy. Looking at him you wouldn't even know he had a recurrence. He is full of energy,eating pretty good for Owain and is having no trouble breathing. Those are all really good signs.He is no where  close to being in critical condition. We are thankful.

The game plan for now is Dr.Z (surgeon) is going to have a meeting with other surgeons.Hoping to come up with a better plan. The gore tex is not working for our little man. He has three gore tex patches and still managed to have a reherniatoin  three times! He is not happy that this is happening again. Neither are we. Owain is his first CDH patient that has had a recurrence. Leave it to my little man to be a challenge.So mow we wait until Tuesday or Wednesday to hear what the next game plan will be.In the mean time we will be laying low.No more story time,play dates,trips to the indoor play ground. We need to keep Owain from getting sick. Our plan for tonight we will be having some quality family time with a movie and pop corn.

Thank you to every one who has left a comment here or on Face book. It really has been up lifting to read them.

If you are a parent of child with CDH and they needed a patch.
What type of patch was used?
Did your child have any recurrence?

After a week of being cooped up in the house apartment we got back into the swing of our normal weekly routine story time at our local Library,play dates, walks to the park on a dry sunny day.Owain also had his last scheduled x ray and a follow up appointment with his amazing surgeon Dr.Z. Everything looked good.Gore tex patch still working as part of his left diaphragm keeping all of his organs that should be below his diaphragm below where they belong. So we thought....

Something doesn't quite look right compared to his last chest x ray back in September. Dr.Z ordered an ultra sound to triple check. We had the ultra sound this after noon. The technician and the Doctor (remembered Owain from a  year and three months ago when he had his first and second recurrence.) Just like last time they weren't able to tell he has yet another recurrence. Owain's chest is unique. Not like your average two year old.Normally  the technician will pin point where the diaphragm is by locating the spleen ( his spleen bleed to death during his first repair surgery at 17 days old), kidney ect.... Since everything is in it's unique spot or missing it is much harder to pin point and determine a recurrence. Tomorrow Owain will have a CT scan. Then we will have some answers.
Tonight I feel calm. I remember when he had his first and second recurrence I was a nervous wreck of the thought of my baby having to go through yet another surgery. another hospital stay. I still don't like the idea of him having to go through all that yet again but I am calm. It is what it is. and I know that my little man is one tough CDH warrior. With all three of his surgeries he recovered quickly. Even after his first repair surgery at seventeen days old he nearly died,lost his spleen. He was in bad shape but five days later he was off the ventilator and in my arms for the first time. If my little man could get through that, surgery #2 (first recurrence), surgery #3 (second recurrence). Surgery 2 and 3 were only a day a part from one another.He recovered like a champ and  we were   home after only six days in the hospital.So tonight I am calm. We don't have answers yet if Owain has had another recurrence and will need a fourth repair surgery but   tonight I am calm. I am confident that no matter what happens my little man with handle it like a champ.