My Sunshine

So I had to share this sweet little video he made for his cousin, Drake. He sings these songs quite frequently around the house. However, when I try to record him he stops singing. He will do anything for Drake - so he sang his heart out for him.

You are my Sunshine was thee song that I sang on repeat when I would rock him in the hospital. When my brain was worn, and no other songs would come to mind - I could count on it. One night I remember that song turning into my prayer. His oxygen sats were low, and his body temperature dipped to 96 degrees. His heart rate kept dropping, and in an attempt to warm him up I held him skin-to-skin. While I held him I kept that song on repeat - and prayed "please don't take my sunshine away...please don't take my sunshine away...please, Lord, don't take my sunshine away".

I am so thankful that my little man can now serenade me with this song. He will forever be my little ray of sunshine.

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.

MRI 3/4/15

Many of you who have followed our story from the beginning remember Gavin's little "bump" he was born with. It was a form of Spina Bifida. In a nutshell the spinal fluid went through an opening in Gavin's skull. He had surgery to remove the bump, they placed a mesh barrier to allow the skull to grow closed. Last February we had an MRI to make sure the hole had closed, but it was still the same size.

This is what the bump looked like before surgery: 

Tomorrow we go in for another MRI of his head and spine. It will determine if he will need surgery to close the hole. They will take a bone composite and fill in the opening and that will fix it permanently.

I know a lot of you have been praying for us, and I ask that you specifically pray for him tomorrow. He will be intubated and sedated for the 3 hour MRI. He usually is great with sedation, and we are praying that tomorrow is no different. Pray for his patience - no food after midnight. Pray for the results. We have been praying that it closed. If that is not the case, we praying that we would be content and confident to face another surgery.

They will also be examining his spinal cord. He had the tethered cord released at the same time that they repaired his bump. The last MRI showed fluid in the spinal column. It should have disappeared after the surgery, but that was not the case. It is possible that the scoliosis was contributing to the problem, and since the spine fusion surgery corrected the scoliosis, we are praying it also corrected the fluid. The last conversation we had with neurosurgeon, he indicated that most people don't need surgery to correct this, but it does need to be monitored.

I apologize for the long list - but we are grateful for all of our prayer warriors!

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!

Grace

The more I live, the more I realize that everyone has their own "hard".

...The father struggling to keep up with the ever growing demands of his wife and children.
...The daughter who lost her father. He was her hero - he always will be.
...The mother caring for her medically complex child. Day in-day out. No end, no break.
...The parents who lost their son. Why him? He was too young.
...The new mom, struggling to stay awake during nightly feeds. She can only hope to have enough energy to welcome visitors who come to see her new little one.
...The dad who regrets missing out on special moments in life, all because he was chasing the American Dream.
...The wife who clings to her lost love. Just one year ago. Running to his closet to get one last breath of his scent.
...The family, torn apart by a broken marriage. How did it come to this?
...The sister, longing for a healthy brother. Why does he seem so distant these days?
...The mama doing the parent thing on her own. What would she give for a break?
...The student who struggles each day, but one cruel peer's words make them question if all this is worth it.
...The parents who made it home from the longest hospital stay of their lives, only to feel overwhelmed beyond belief. How will they make it each day?
...The mom/wife/caregiver who fears what will happen when she is gone. Who will love on her littles like she does? Who will be the cheerleader for her husband? Can cancer be so cruel?
...The girl wondering if love will ever find her, or if it will only continue to find others around her.
...The one who by all appearances has it all together, while inside lies only broken pieces and broken dreams.


You see - we all have our own "hard". Don't believe me? Just look at your family. Your friends. Really look at them - really SEE them.

With outstretched arms, extend GRACE. Open up your hands and let love flow. Speak uplifting words, and always - ALWAYS know that God is in control of your "hard". He sees you in your need, and He isn't about to let go.
Rest in that. Some days it is all we have.

E-Z

Not to sound old fashioned, but in our "day-and-age", we are looking for the easiest, fastest way for EVERYTHING.

We live in a time where NO ONE has time.

Trying to fit as many activities in one day as humanly possible. Rushing from this play-date to that appointment, from that appointment to home - just in time to prepare a shockingly un-nutritious meal for your family. I want a social life just as much as the next guy, but it can be exhausting.

Keeping up with the Joneses (or Kardashians) is an all-to-real picture of our society.

I get it - believe me! I have Googled until I was blue in the face.

How to lose weight, while still eating what I want and exercising. There's a pill for that.

5 ingredient dinners, so I don't waste my night cooking. There's AllRecipes for that.

How do you know when you have spent "enough time" with the Lord. (You know, the perfect amount to make you not feel guilty, but also not interfering with your personal time.) Sadly - I have felt that way many times, and the truth is that you can't put a time-frame on God. I NEED that time with Him, man do I ever!

How to get quality time with your husband, while also pinning your next DIY projects to your Pinterest board. Take out the "quality time" part, and you have explained 95% of our homes - sadly this includes mine some days.

Get your child potty-trained faster. There's no pill for that, but plenty of ideas from moms. P.S. - turns out each kid is different! Imagine that!

Our potty-training boy. He's doing so great!
The goggles are a must!

It's no wonder we find anti-aging products everywhere we look! We are putting on the miles faster than ever before. I have found my fair share of grays already.

All of this dawned on me this morning as I pulled my weary soul out of bed. I am guilty of rushing, cramming, saying "yes" when I should have said "maybe later", and in general - looking for the easy way out.

Just my own thoughts, but maybe I need realize that I can't do it all. Jason, if you are reading this - you were right... I commit to things when I really shouldn't, and instead should be prioritizing my life better. I don't want to look back at these precious years with Jason & Gavin, and only see a blur.

My attempt to get a quick answer from the Dr. landed me in the ER.
Turns out stress can do a lot to a body.

I don't want to regret taking on too much, while I miss the little things that really matter. Do the dishes in the sink matter as much when there is a little guy holding a book, pulling on my leg to read? Simple answer: no!

Try saying no to that face! I dare you.

I want to plan my meals so I enjoy cooking again. I want to take time to talk with Jason like we used to - instead of "unwinding" with the TV or our iPhones. I want to spend time with my Lord each morning so I can renew my strength.

Here's to accomplishing my "I want tos".

God, Genetics, and a blessed heart

I wrote this on Monday after Gavin's appointments.

Today I am weary. 

My bones ache, and my feet drag as though they are going through 6 inches of mud. 

Part lack of sleep (18 mo. kidlet teething with an ear infection). Part due to being emotionally drained.

Thankfully God's love is relentless, and has gotten us through. 

Today I faced the most dreaded appointment - Genetics.

Before Gavin was born they knew he had multiple medical complications, and right after he was born they attempted to get a blood sample from his umbilical cord. The test didn't work properly, and since Gavin had a blood transfusion we weren't able to try again until after we left the NICU.

Here we sit - well over a year has passed and I am finally doing it.

Sitting outside the hospital doors, I contemplated leaving.
Heading home.
Content to live in mystery.

I watched the nurses and doctors come and go. Some on their breaks, others having put in countless hours - in much need of a place to rest.

Patients, moms, dads, siblings - all wandering by. Some were talking. Others looked like they were all too familiar with this place.

I sat their, remembering weary days past. Days that threatened to consume me - to defeat me - to bring into question all that I once knew.

Ever have those moments were everything you see brings emotions? The wind on your face seems to be too much, and a tear falls. This was one of those moments.

A mother, pushing her son (not much older than 10) passed by us. In that moment, time began to freeze. The boy slowly looked up - our eyes met. He clearly was battling for his life - cancer.
The look he gave. I don't think I will ever be able to wipe his look from my mind - not a look of pain, or pity. It was a look of self-consciousness - he probably didn't see himself as the strong boy he once was. Perhaps he would rather have been walking with his friends, instead of being pushed by his mom. He may have seen himself as weak.

I saw a hero.

Then and there I forgot why we were there. I stopped and prayed.

To a passer-by, I probably looked like I was daydreaming. I didn't bow my head - my eyes weren't closed - my mouth didn't utter a word. I just silently prayed in my heart for healing for this sweet boy - I prayed for his brave mom, who stands by his side though the waves keep crashing in on them.

When I finished I looked over at Gavin and he said "Amen" - AMEN - Aaaaaaaammenn. Something he recently learned, but he had no reason to believe I had just prayed. Tears filled my eyes as I said "that's right buddy - AMEN!"

You see - the spirit moves sometimes. Ok - not just sometimes...He is ALWAYS moving, I am just trying to move on my own, and am too busy to notice. This may be little in the grand scheme, but it was enough to make me stop and notice Him moving.

That was my sign - we were going to be okay. I made my way for the big revolving door, up the elevator and into a room where we waited for our Geneticist to arrive. We were asked questions about my side - Jason's side. Grandparents, aunts, uncles, cousins, great-aunts and uncles. They covered it all. Much to my delight - she wasn't scary at all! For some reason I had her pictured as a "doom and gloom" kind of person. She was very interested in Gavin's unique little "deformities". Some of the things she got super excited over since she hadn't seen one for a while - if ever...grrreeat! :) I still don't know what to think of that. For now we will take it as a compliment.

In my attempts to not bore you - I will just say that she didn't find anything that was an immediate concern. We did a blood sample that we will get results on in 6 weeks. Until then, we just praise God for our little miracle.
Many of you don't know this, but I hemorrhaged at 6 weeks. We thought we were going to lose him. There is now a "theory" that could actually explain how/why the main deformities happened. Basically when the hemorrhage happened, it cut off some blood supply to Gavin - possible reason for it all? Maybe.

I choose to think that God knew exactly what He was doing with Gavin. He blessed us with being his parents and I don't think that any of this was just "random". There are probably many medical explanations for it, but I don't need them. I know he is mine, he was created by God almighty, and I will love him all of the days I am here on earth.

How could you not?

Life according to the iPhone

Turns out having a nice big cup of coffee at 9:00 has more of an effect on me than it used to. Wide.a.wake.

What a great time to bring you all up to date on our lives!?

As you know, Gavin had a pH probe test done. Over a 24 hour period he had 73 "episodes" (hiccups/gagging/coughing/vomiting) and 50% of those episodes were high in the esophagus. Gavin's GI doctor also said that his stomach is VERY acidic - poor kid didn't stand a chance with his genetic make-up!!! The plan for now is to control the acid with Prevacid, and help lessen the reflux by not feeding him after 6:30 at night. Our hope is to prevent any aspiration that could have been causing his pneumonias.

We also had been treating Gavin for allergies to soy and dairy. After a "scratch" test, we found out that the blood test gave us a false positive - which means NO allergies! Such great news!

So for now, we pray that he stays healthy and will re-evaluate in 6 weeks. We also will be having an EKG done to rule out a heart murmur that he had when he was in the NICU. It hasn't ever been an issue, but his pediatrician thought it would be a good idea to get it checked out one last time, since he had such a hard winter.

Life has been busy - I'll let the pictures speak for themselves.

Patiently waiting for the Dr. - why not play with mama's mascara?

Typical guy

First wagon ride in the hospital! No quarantine this time!

The therapy dogs made a visit to our room. He LOVES dogs!

He sleeps like this - every night!

Cousins - impossible to get a good picture of both!

Allergy test - NEGATIVE!!!!

Pillows from Preston sent Gavin four pillows for any future hospital stays!
Such a sweet organization!

My first date with Gavin - how cute is he!?

Our good friends were our dates to the MN Ballet
Thanks to HopeKids for the great tickets!

Chipotle after the ballet - best buds!

Who me? Handsome? Why yes - I am!

Nothing deep

I have tried to think of something "deep" to share. Something that reflects this Easter weekend, but it's just not coming. Maybe it doesn't have to be deep - maybe it is just the simple, yet AMAZING fact that we have a Savior. A Savior who died, was buried, and rose for US! For our sins. The weight of the world's sins - past. present. future. are wiped clean for those of us who trust in Him.

It is reason to celebrate! Reason to be thankful! Hope for our future - peace for today!

Pre-esophagus dilation. 

Rosy cheeks! Happy boy!
The dilation went great, he shouldn't need it done again!

April 17th snow DUMP!
We got 14 1/2 inches at our house.

Gavin's favorite - BATHTIME!

Happy boy at daycare! We love our Nikki!
Our little boy is growing up! Doesn't he look old?