Bitter Sweet

This weekend we get the privilege of speaking at the University of Minnesota Children's Hospital Dance Marathon. It is an amazing event, where the students at the U raise money for the hospital. Last year we went, and had a blast! A huge bonus was meeting a dear friend and her son. More on them in a later post.

I can't get over how much I have grown, and learned since Gavin came into our lives. I will surely never be the same. Lessons of love, heartache, joy, anxiety, faith, and gobs more. As I think of what to share this weekend, I spent some time reflecting on our little boy's life. It has been a crazy ride, and I am thankful for every moment - yes...even the hard stuff!

 All the "normal" moments in his first year. The milestones, the first words, and all our cuddle time. It helped my mama-heart grow and flourish.

 For moments that seemed so hard, and all we had to cling to was our Lord. Those moments taught me to trust, and have faith that Almighty God has us in His hands - always.

 Seeing life through different eyes. For most, fans and lights are a means to see in the dark. To us they are that, and so much more! I can't get over the joy that he still gets when he is near a fan. Lord, may he always keep his love for little things.

 Tests that tried our patience, and yet grew it at the same time. We are so grateful for our hospital - the University of MN - without it, I can't help but wonder where we would be.

 Nebs - oh the nebs. God must have known that I needed an abundance of cuddles. They are still my favorite time of day. We get our cuddles in the morning and at night - and a couple added times if he is sick.

 His heart radiates through his eyes. He has always been told what beautiful eyes he has, and no doubt the mile-long eyelashes help, but to me it is the sparkle in them. The fiery little soul that brings me and so many others joy.

 We have learned to find joy in times when it was hard to find. It isn't about having it all - the cars, clothes, and cash can only get you so far. At the end of the day, I'd rather have Jesus, my men, and my family than all the things this world can provide.

 I thank GOD that He saw me fit to be the mama of a boy. I always felt bad for moms of boys - the dirt, wrestling, and noise they bring. Oh how I needed that in my life! I never saw myself having a boy, and man am I glad I didn't get to write that part of my life! He is the answer to my mama-heart prayers.

As I look back I can't help but get a little emotional, wishing for a few of those moments back. As great as those days were, I am so thankful for each day the sun rises and I get to be a lone woman in my house of men.

Ride the waves

...of emotions that is.

This past week and a half has been harder than I would care to admit. When I don't write, it is because I simply don't know what to say, or maybe because I don't know how to say it all. Having a kid go through any illness is hard, having them go through a surgery is (to me) on a whole different level. They both require faith, but seeing the intense pain on Gavin's face brought me to tears. I may sound a bit calloused when I say that the medical procedures usually don't evoke tears, but that is because I go through the motions to help Gavin get through it. But I broke, like something so deep in my heart simply wept.

I didn't expect it when we first discussed the surgery. I was almost excited to have it behind us (and I am), but as the days approached I could feel my fears closing in on me. Fear of something going wrong, fear of the absolute worst, fear of another hospital stay, fear of losing it myself. Jason thinks it was this bad before his other procedures, and maybe it was, but I just don't remember it being that way.

So all that being said, we are on the other side and I am thrilled! Through all of the fears, we saw God's mighty hands working. The time during surgery seemed to go faster than I was thinking it would, and we were surrounded by our wonderful family. Gavin looked so much better post-surgery than I was expecting and I was able to hold him only a couple hours after surgery.

Things I don't want to forget about our experience:

• Gavin's sweet spirit - even in pain. He made sure to tell the nurses/doctors/lab workers "thank-you" even after sticking him, poking at him, and doing vitals. While he may now be significantly more wary of medical professionals, he never lost his politeness.
• Cuddle was the word of the week (still is). When pain would hit, he would want to cuddle. He will be two in December, so we are coming to the end of the "cuddle phase", so I cuddled with every fiber of my being.
• Morphine strangely made Gavin a little genius. If you ask Gavin what color something is, he will answer "orange". He may not have even looked at the object in question - but it is "orange" to him. Well on morphine (and many other drugs) he knew blue, green, red, and yellow. He also normally can "count", but skips a few numbers. Well on morphine he counted 1-10 without skipping a beat! Lets not tell him about this when he gets older.
• Gavin made a few new friends - most notably, the "x-ray transport guy" named Dave. Gavin instantly said "papa". Well this man hardly looked like papa - aside from grey hair. He had tattoos up each arm and not a very talkative man. The ride down was made in silence. The ride back was full of chatting - he asked how long Gavin has been there and if he had been a patient before (yes...a number of times). He said he would never forget Gavin, and that we should be proud of the boy we have. That we are!
• The generosity of others. 
• We started attending a new church this past May, so we have a limited 'circle' of friends so far. That circle grew as a call was put out by our sweet pastor's wife, simply asking if anyone wanted to help during this time. The night before surgery (when I was at my lowest), they arrived carrying a basket overflowing with LOVE in the form of food, magazines, toys for Gavin, gift cards and financial support. I am still overwhelmed by it all. In less than a week people who didn't even know us (or our circumstances) blessed us for a lifetime. I couldn't help but think of the body of Christ described in 1 Corinthians 12. They loved us as a part of the body, in a beautiful way.
• Friends and church family who brought meals, both to the hospital and to our home. 
• The sweet gifts for Gavin - so many new things to play with here at home. He is so blessed!
• Generosity of prayers and support. We have felt so loved through this whole experience. When we didn't know what to pray, others were praying on our behalf. When we felt overwhelmed, we were carried by words of encouragement. While we waited on the Lord to heal, we were able to see the body of Christ coming together around one sweet boy - Gavin Lee. The son that God has entrusted to us for a time. 

First night home

It snowed (a ton) so we had to make due with an indoor snowman

Lots of high chair playtime

My mind may want to forget so many things about this experience, but I know that it is shaping our journey. His body tells a story. Like a map of God's faithfulness - laid out in scars. The most recent is quite large, but it most largely shows God's healing power. We are praying this is the final surgery, but we know whatever comes in this life that God holds us.

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!

Germ Avoidance

Operation - "Avoid all Germs" is in full swing.

Gavin is scheduled for his spine surgery on November 4. That means our one primary goal is to keep him healthy. Sick Gavin means no surgery, and that means starting from square one on blood/urine test. So on strict orders from Surgeon's nurse, we are implementing extra hand washing, sanitizing phones, and staying home whenever possible. It will take an act of God to keep him healthy - kid always has his hands in his mouth! Prayers are welcomed!

Some of you following our journey remember the vertebrae anomaly in his lower spine. The technical name for it is a semi-segmented hemi-vertebrae (say that 10 times fast). Impressed with my medical terminology? Don't be - I had to practice saying it so many times - it was borderline OCD.

The surgery will be 3 hours long - and they will completely remove the extra 1/2 vertebrae in his lower back. Thankfully our sweet surgeon said this procedure is his favorite to do, and that kids Gavin's age heal like gang-busters.

We will be in the hospital for 5 days. The first 24-48 hours he will be in ICU - the nurse told me to warn family/friends that if they hear "ICU", not to be alarmed. It is normal protocol for patients to go straight to ICU - so consider yourselves warned.

Prayer specifics -

• That God would be glorified in all we say/do, and that Gavin's journey would be one that we can look at and see God's finger prints everywhere.
• For health before surgery and after surgery.
• For the surgeon (Dr. Polly - sweet, sweet man)/anesthesiologist (Dr. Castro-our favorite...yes we have a favorite)/nurses - that they would handle Gavin as if he was their own. That God would guide their hands as they work with my sweet little boy. {pause for tears}
• Patience. For Gavin before the surgery - no food is never a good thing for him. Patience. For us while we wait to get him back in our arms. Patience. For Gavin & us during our stay. One room - hooked to an IV pole - with lots of nurse checks (night and day)...it can make one weary. I am going to see what I can find for "new" exciting toys to bring with us...new seems to be better when it comes to keeping his attention.
• Healing. Pray against infection in the incision and pray that he heals quickly. The incision will be below the diaper line, so you can imagine the risk for infection.

We can't thank you all enough for the encouragement that we have received so far on this journey. 

Nap time - then we are off to enjoy this GORGE-us fall day!