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Tuesday, May 31, 2011

By One of my Best Friends

One of my best friends recently wrote about me on her blog.  It was a very well written post so I wanted to include it on my blog.  Megan is a labor and delivery nurse -- and a mighty fine one might I add!!!  Love you much Megan!

My Friend :  By Megan (Ellett) Parcel

Can I just talk a little bit about one of my best friends, Janna?

She, Andrea, and I met in the fall of 1999, and were basically inseparable until spring 2003 when Andrea and I graduated college. Janna graduated the spring before but came back for lots of weekends. Anyways, these two women are defining women in my life. They loosened me up, helped me become confident and sassy, and are basically the sisters I got to choose. I love them both dearly and would drop anything at anytime if they needed me. I am positive they would do the same. We have grown from giggling college coeds to giggling grown women when we are together. Our husbands get along. Our kids get along. Coincidentally, we all only have boys...word is still out on Andrea's latest bundle of joy, but I have a feeling she's in for boy number two also!

This fall, Janna and her husband, Paul, found out at a routine ultrasound that something was wrong with their baby. Further tests revealed that their second son has a birth defect called congenital diaphragmatic hernia (CDH). To make a long explanation short- his abdominal organs were in his chest cavity and didn't allow his heart or lungs to form or grow properly.

Now, I know what I would have done with news like this. I would have turned into a crying, weak, worrisome, unpleasant, wallowing in the sadness woman. And after learning of the less than favorable odds that he was given- I would have shut down. My heart was breaking for my friend and her family.

Not Janna. She met this head on, did countless hours of research on CDH, doctors, hospitals, treatment options, facilities. She became totally engrossed and invested in this baby. She started throwing around medical terms like a pro. She started a blog (
www.ourcdhstory.blogspot.com) for all her friends and family to read. The last time I checked, that blog had over 20,000 visits.

She was determined to change the odds for her baby.

I know Janna. There is no one more head strong than her. (I know, I've lived with her!) If she wants something to happen, she makes it happen. She excels at everything she does. She is strong and smart and always prepared.

Through this whole thing, she has been positive and thankful. I am sure she has had bad days or moments, but she has kept it in order. And that's something I am in awe of.

After Garrett was born, she has been with him every day. She knows him like the back of her hand. She has been his biggest supporter and advocate. She hasn't been afraid to tell the doctors and nurses what she thinks is best for her baby. She knows that no one knows him like she does, and she does what he needs her to do for him.

I had the privilege of visiting them last week. Let me just say, the pictures do not do the poor kid justice. In the pictures, yes, he is adorable. In person, he is beautiful. Big, dark, handsome eyes...my oh my. Heartbreaker.

Now, I see babies every day. But when I saw him, I teared up. He is a fighter, stubborn, and headstrong. He knows what he wants and how to get it. He's got his momma in him. And watching them look at each other will forever be locked in my memories.

The odds for a CDH baby truthfully aren't very good. Definitely not in your favor. Garrett has been a lil man on a mission. He was able to stay off ECMO (baby life support), he did great after his surgery, was able to be extubated, and most recently, has mastered the art of eating. (He will now fit in with all of us and our boys!) This little baby is nothing short of a miracle.

I am so thankful to God for Garrett's recovery. I can't wait to see what life has in store for him. He has a purpose, that is for sure! I am excited to see him grow up.

I am sure though, no where near as excited as his mother and my friend Janna.

Cannula Free: Day 41

Garrett came off his oxygen today.  He still breathes fast.  It is weird to be able to see his face.  VERY WEIRD. 


Monday, May 30, 2011

Frantic for the Bottle

Garrett gets "frantic" for his bottle.  It is so funny.  "Frantic" is the word the nurses use to describe it.  He just flails those little arms and then – suck, suck, suck, suck as fast as possible once he gets his hands on it.  Too funny.  Today they decided to change his feedings to allow him to eat as much as he wants at each feeding.  So they filled his bottle up with 90 mls……….and he ate all of it…………hahhahaha.  I did 2 feedings today and he ate the entire 90 mls at both feedings.  Quite the little porker. 
He is still keeping all his feedings down.  It is almost like his stomach just ‘figured it out’.  He acts so much like a normal baby now I am somewhat shocked.  For so long he was sedated and if he did get upset, they would just give him stronger drugs.  Not so much anymore.  Now the binky is his main soothing item instead of upping the morphine or getting a dose of versed ordered.  AAAAHHHHH, to be a little normal is a wonderful thing.
Special thanks to the Henson Family – Herb (aka Herbie as far as I am concerned), Michelle, Alyssa, & Anna for the Red Lobster Gift Card.  I can’t remember the last time I cooked a meal from scratch in the past 40 days, so the gift card is VERY APPRECIATED!!!  I can’t wait for you to all meet Garrett.
Also would like to thank a fellow CDH mom Lindsay Kranz for the CDH t-shirt.  I keep it in my car as a spare incase Garrett decides to decorate me with spit-up at the hospital.  It is always great to get to see you and Karlie – what a strong little CDH miracle she is!

40 Days......you must be kidding me! We have been here FOREVER!

Garrett is doing just fine – I know I took 2 days off from updating the blog.  We just had a very busy Memorial Day weekend, hence the hiatus.

Nothing very new to report.  They CONTINUE to wean his morphine and oxygen; however he is still on both.  We are not sure if he will come home on oxygen or not.  There has been talk about when Garrett will go to the “zoo”.  Apparently they do not use the “H” word (home) here in the NICU as babies tend to regress when they do! Hahahah.  So they talk about them going to the “zoo”.  I find that very entertaining.  Though there has been some talk of it, I know it is not in the immediate future.  We still have a list of things to accomplish before little Garrett will be taking any trips to the zoo.

 I am very ready for the zoo whenever we can get him there!!

Friday, May 27, 2011

Silence........(Day 37)

            Such a quiet room we now have.  No med pumps beeping.  No alarms from the vitals monitor (unless one of Garrett’s leads falls off or comes loose, which does happen occasionally).  No alarms from the ventilator. No alarms from CPAP.  Just a quiet, content sleeping baby………..
            Special thank you to Shaun, Andrea, and Westin Gress.  The lunch was great and I can’t wait to break into that gift basket.  Westin is such a cutie; and SO WELL BEHAVED!  My goodness!
Trying out the NICU swing.




Thursday, May 26, 2011

Removal of the Feeding Tube

Garrett's feeding tube came out today also. Dr. Yang stopped by the room and told them to remove it, so out it came.  Not a bad thing considering Garrett removed it twice by himself in the past 24 hours or so.  He was OBVIOUSLY ready to see it go.   He will now eat everything by mouth.  Oxygen cannulas are the only thing left on my baby's face.  :)

We are now down to a 'short' list of what Garrett is on.  This list ain't got nothin on where we started!  There is my Southern IL lingo for ya --
  • Oxygen - Nasal Cannulas (will continue to wean)
  • Morphine (will continue to wean)
  • Pepcid (will continue at home)
  • Daily Vitamin (will continue at home)
Let's not forget:
  • SMALL lungs - hopefully will continue to develop more lung tissue over TIME
  • Slightly mis-shaped heart - still seems to work normally

Day 36: The Mobile

Garrett’s occupational therapist recommended a mobile for him.  So I got him one and he is fascinated by it.  Grant had one and had no interest in it really.  Garrett is still eating well.  Some feedings he does gets full before he has taken all of his “66 mls” so we just put whatever he didn’t finish down his tube.  He is continuing to keep all his feedings down, gotta love that!  Besides his feedings (which is what has obviously been our focus here lately) we have been weaning his morphine and monitoring his withdraw symptoms.  He is also scheduled to undergo an echocardiogram tomorrow to check on his heart and his pulmonary hypertension.