The List

I woke up this morning with my little guy on my mind. Mostly because he was in the other room - ready to be up for the morning. The other reason was a phone call from the Geneticist yesterday. Many of you know Gavin has an "extra variable" on his first chromosome. In order to know if it would be a future problem, Jason and I got tested. Turns out, I am the carrier of the "extra variable" too. In simple terms it means that we are both a little extra awesome. This variable has nothing to do with the "problem list" that Gavin has had to endure. It is just a part of our genetic make-up...lots of people have this extra variable, so maybe we aren't the only extra special ones out there.

That got me thinking of his problem list. Which got me thinking of the ways God has provided. Out of that, I felt the need to praise the Lord with you all. So here goes - his "problem list" and the huge ANSWERS that God has given us!

"Problem List:"
Premature baby. He is still on the small side (5%), but he is growing, and excelling intellectually.
Esphagus not attached to Stomach. Repaired on day of life two. Besides needing to cut his food up very small, he is doing well!!!
Ineffective Thermoregulation. He doesn't have this problem anymore! 
Congenital Anomaly of Spine. Will be repaired on November 4th! Prayers for this!!!
Scalp Cyst. (Spina Bifida). Removed the cyst with a successful surgery! Follow-up MRI March 2015 to see if the hole in Gavin's skull has closed - prayers for that too!
Heart Murmur. Ruled out any structural problems in July of this year. Should grow out of this.
Congenital Anomaly of Ear. Nothing needs to be done with it - just adds to his cuteness.
Port-wine Birthmark on left leg. Ruled out any vein anomalies. Besides being asked frequently if it is a rash, it is doing great!
Tethered Spinal Cord. Cord released May 2013. Doing great! There is still fluid on the spine, but we are praying that it will go away on its own! Follow-up MRI March 2015.
Urinary Tract Infection. Had one during NICU stay, no more since!
Seizures. He is off his seizure meds, and we are praying he stays seizure free!
Multiple bouts of Pneumonia. God was with him each time. It was never easy, but he was such a strong kid. Praying this winter is pneumonia FREE!
Acid Reflux Disease (GERD). Still has a very acidic stomach, but for the most part tolerates it well! When he was very tiny the reflux was so severe it caused heart rate drops. Now he will throw up sometimes, and have hiccups. Overall - doing well!

From this: December 16, 2012

To this: October 18, 2014

Praising the Lord today!

Legacy Bracelet

This post should have been done about a year ago. A lot of you who know me, know how much this bracelet means to me. It was gifted by a sweet friend, Amy Skogerboe, while we were still in the NICU. She has an amazing ability to make "Legacy Bracelets" - a reminder of where we have come from.

I wear mine EVERY time we come to the hospital - even if it for just a small procedure. It is a visible reminder that God was with us through everything with Gavin, and He will continue to be with us in the days ahead.

 Each time we come to the hospital, at least 4 people comment on how wonderful my bracelet is. I am able to share Gavin's story with them and most often, they always want to know where I got it! They know so many families who would love a bracelet. Even the surgeons have commented on them - men don't usually notice things like that, but it grabs their attention too!

How adorable, right?

I rarely turn the pictures in towards my wrist, but if I do - there is a super cute pattern on the inside. I don't know the exact process, but each block is wood, and the pattern is made of fabric. SO COOL!

 Oh - and did I mention it is a great toy for Gavin to play with when he needs extra distraction? They are durable!!

We have come a long way, baby! If I ever need reminding I look at my bracelet with my little 4lb 8oz baby on it.
Oh - and it's not just for medical parents! They are great for Mothers' Day gifts for moms, for grandmothers, or just because! I could also see them being an amazing gift for someone who lost a loved one.

Go check out their website! Legacy Bracelets

*Legacy Bracelets did not ask me to write this, I just had to share because I can't thank them enough for sharing this amazing gift with me!