Tuesday, July 20, 2010

The night before

Tomorrow morning, we will be going to Forsyth Medical Center at 7:30 am. Unless he flips over tonight, we'll be seeing Oz via C-section.

Early on in the pregnancy, I [Kendrah] was super concerned with birth plans and avoiding medical interventions - was super into the whole "natural childbirth" idea. That all changed. At this point, I'm not concerned at all with myself - I want whatever is best for Oz.

I can't believe that we are here. It's been fast and slow all at once. It seems like only yesterday that pregnancy test came back positive, then I'm fast-forwarded to the day we were diagnosed with CDH, there is a blur of appointments, and now - here we are!

I'm scared and I'm excited. It's hard to imagine that tomorrow night, I'll be in a hospital room - not on the couch feeling him wriggle around (which I love by the way!). It's even harder to know that my newborn son will be 2 miles away from me, receiving awesome 24/7 care at the hands of nurses and Doctors, while I am trying to walk and get my bowels moving so I can "earn" a 4-6 hour pass to visit on Thursday.

We will know more about his condition in those hours after he's born. We pray with all our might he stabilizes soon.

"I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there' and it will move. Nothing will be impossible for you." Matthew 17:20

We just want Oz to know that we love him - more than we thought we could love anything or anyone. And I know that will only multiply when we get to see his precious face tomorrow for a brief moment. We want him to know he's been such a good baby. Dr. Pr (the surgeon) said for him to stay in until term and grow as big as possible, even though that was unlikely, and here we are at 39 week, 5 days! He was measuring 5.5 lbs at 34 weeks! I told him to stay breech, because I thought maybe gravity will help keep organs from further penetrating his chest cavity (which is not very scientific, I know) - but he has, and the hernia has not worsened! Mommy and Daddy are so proud of him!

Monday, July 19, 2010

After Oz enters the world, our prayer list:

The LORD will perfect that which concerneth me: thy mercy, O LORD, endureth for ever: forsake not the works of thine own hands. ~Psalm 138:8

What we know we are facing right now, and could change.

In order to stabilize:
  • His lungs to function
  • His heart to function and pump oxygen to the rest of his body
  • His pulmonary blood pressure to drop like it should
  • His blood pH to be normalized
  • His kidneys to function
When he stabilizes, he will have surgery in 48 hours:
  • We really, really want Dr. Pr to be his surgeon
  • He will have a repair to pull the abdominal organs (which we are praying are few) back into his abdomen.
  • His diaphragm will be closed, we pray he has enough tissue to fix it, or he may need a patch
  • He will have his intestines fixed - right now they are slightly misaligned because of the CDH
His heart:
  • We pray his left side of his heart will grow and become symmetric, and his aortic arch increases in diameter - it is slightly small
And throughout this, we pray NO INFECTIONS.

This is just the start of our new battle against CDH...we have faith and know God has been and will continue to be with us.

Sunday, July 18, 2010

The Nursery of Oz

We wanted something bright and fun for Oz...we hope this fits the bill!

The pictures are painted by Mom and Dad - and represent Oz's furry siblings!




The crib skirt, valences, several afghans, and even a few plushie toys are also hand made with love to match our bright and colorful theme!

Being able to create and "design" (if you will) this living space was a great way for us to pour our love into something tangible for Oz! We hope he loves it as much as we do!

What is "normal" anyway?

When we found out we were expecting, our lives changed forever. It was something we never knew we were missing, and we couldn't have been happier.

We read the baby books week by week, began planning our future with our new child - what will it be like?

We started planning the nursery - bought furniture, learned about the MILLION & ONE things babies "need" in 2010.

Then at 19 weeks - we found out 1) we were having a boy! 2) he had CDH. Well, we were told loads of other awful things, but that's since fallen off our diagnosis and why dwell on it?

At that point, our "normal pregnancy" was forever changed.

Helpless isn't even the word for it...but we picked ourselves up (with the help of many prayers and support from family and friends) and decided we weren't giving up on our son. He was given to us for a reason...and we were going to fight for him with everything we had!

Over the course of the last 20 weeks, we have been through numerous specialists and monitoring procedures (MRI, ECHOs, Ultrasounds, Non-Stress Tests (NSTs), BioPhysical Profile (BPP)) as well as a tour of the NICU. We have learned a LOT - including how to read ultrasounds, NST traces, and become experts on finding his heartbeat! We've accepted this as our "normal"....and thankfully so did our bosses and professors, because we've had weekly appointments since!

We have also become involved with the CDH support campaign, CHERUBS - attended a walk in March 2010, participated in a photo shoot as expectant CDH parents for awareness posters, and are currently voting everyday in the Facebook contest for APX alarm where the group is currently 1st place to win $100,000! Even more importantly, we have been embraced by a wonderful community of people who understand what our "normal" is.

As we head towards our due date - July 21st(!), our son, Oz is looking really great (even according to the Drs who are "conservative" at best)! Through all of this, he's been a trooper, a stubborn one at times, but a trooper! Our surgeon told us the most important thing was to make sure Mom stayed healthy and Oz was happy to go full term...and here we are, healthy and happy!

What we know: He has LCDH (left sided), his stomach is in his chest, and pushing against his heart - makes the left side slightly smaller. He has both lungs and lung tissue, and has been practicing breathing already (hiccups, using amniotic fluid). And when he's born, we have a lot of monitoring and assessing to go through to make sure his lungs and heart are working. Then when he's stable, he'll have his repair surgery.

Has this been easy? No - but we've learned a lot about ourselves, and found strength and faith we didn't know we had.

Even though this is our "normal"... that doesn't mean we stopped our planning and dreams for Oz: We have a color crazy nursery that we "designed" the theme for ourselves and handcrafted much of the decor, we have more baby gear and stuff than we can fit into our house, can't wait to get him home and start showing Oz the world (including LOTS of zoos and aquariums!), and still read the week by week baby growth books/websites.

Does it make some people uncomfortable? You bet, but that's their problem, not ours. The majority of our friends and family have been nothing but POSITIVE influences, and rallied around us from day one with love, prayers and support and faith...and we don't have time for people who feel otherwise.

We love Oz more than we thought possible we could love someone...and would NOT change or trade him for anything. He is NOT a burden, he is our child, he is a BLESSING. He is an amazing, strong boy who has defied the odds already!!