Second time around

Many have asked if this blog has ended. The short answer is NO!

Funnily, I have started many entries, and they just don't come together like I want. So whether this one comes together, or not---it is getting posted! (my apologies in advance)



Some of you know that we are expecting our second baby the end of this year! What an exciting time this has been, and also full of more emotions than I could have expected. I have had plenty of pregnancy symptoms - which came as a surprise because Gavin's pregnancy was fairly calm in the first 20 weeks. It was after those first 20 weeks that it all started to fall to pieces. The numbness in my heart turned to fear, and out of that fear I found my faith more deeply than ever.

Thankfully God didn't leave me in that fear. As we approach 20 weeks I can't help but look back at the life that God gave us. Not just Gavin's - but Jason & my life together. We have grown, learned, clung to hope, and drawn closer together as a family. We have leaned so hard on our faith that it seemed the well would run dry. Praise the Lord, our story is not done, the little one kicking me from the inside is proof of that.

This week we were on vacation with Jason's family and it was such a wonderful time away. Before others would wake, I found myself on the front porch facing the rising sun and lake shore. Bible in hand, I dug into the Word. Deeply yearning to find my Savior in those moments. He didn't disappoint, I found him there, I found him in the calm of the morning. I found him in the rocking boat. I found him in the laughter of cousins playing while sandcastles were built. He was, and always is there - if only I was constantly on the look-out for Him.

The morning of August 24th is the awaited ultrasound, and with little hesitation I say that "It is well, with my soul". It isn't that I fear any issues that arise - for God has proven Himself more than faithful. My first pregnancy I found myself awake at 3:00 am, Googling answers to the unknown. This time around, I can truly say "It is well".

One earnest concern I had when we started considering adding another life to our family, was Gavin. I feared that people would question why we would even "risk" having another. And while there have been a few of those questions presented to us, it hasn't been as bad as I anticipated. My mama heart fears that Gavin will think he was a burden that we had to carry. Oh my son - you are the joy in my heart - the big reason I can say that "it is well", is because God showed himself faithful in YOU. Not just the medical road you have bravely traveled, but the way your heart is so in-tune with others. Your concern for others at such a young age boggles my mind, and warms my heart. While the road has not always been easy, I would travel it again, and again, and again to be with you.

I will leave you with a song that has become my heart cry:
"So let go, my soul - and Trust in HIM the waves and wind still know His name. IT IS WELL, WITH MY SOUL".

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!

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!

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".

Lately

On my day off from work, Gavin and I spent the morning with my wonderful friend - Erin. 

Even won a prize (first time ever) from the arcade. No - I didn't spend my own mulah on it - the waitress gave Gavin 2 free tokens.

Winner-winner, chicken dinner!

Pool time - doesn't get much better than this!
Ok - I'll be honest, he doesn't have a love for the water. 
We are getting there though.

A boy and his blanket.

He loves his ducky blanket - a big thanks to Prenatal Partners for Life 

for giving it to him!

He is such a big kid now! He loves holding his own nebulizer mask in the morning.

Smooooshed face! I sneak in to watch him sleep on a regular basis. 

I think that is a normal thing for moms to do, right?

Happy potty training boy! Even in the mornings - what an amazing kid we have!

Don't forget.

The way you say "naw-naw" when you mean yes.

The first time you signed "please" and meant it.

How you blow kisses and say "buh-bye" whenever we leave somewhere. 

And how you repeatedly kiss your hand, because you haven't figured out how to "blow" them away.

You are an amazingly good traveler! 

When I pick you up from daycare, I ask where we are going and you yell "HOME!"

How you stop in your tracks when you hear music.

The way you smell after a bath.

or how the smell of sunscreen lingers on your skin after daycare.

When you eat, you leave no food behind - you LOVE food! Despite all of your horrible gagging/spit-up/vomiting, your love for food trumps all! 

Some day when all I can get you to eat is a box of Kraft and Pizza, may I remember these days.

When I do your nebulizer treatments at night, you hold your hand out so I can tickle it. 

You love it, it calms you.

When we stomp our feet, you always scream and run to wherever we are.

You love to play, and daddy is your favorite playmate.

Whenever we finish praying you say "Aaammeeen".

Your expressions. Oh heavens, you have an expressive face.

Always have.

You, my boy, need to know that 

I cover your face in kisses whenever I get the chance. 

I sneak in a few extra when you sleep just because I can.

You need to know that no matter what you do, I will love you.
No matter how old you get, I will still want to know what is going on in your life.

And I will always be proud of you. You have taught me so much about life, and how to live it.

God sure knew what He was doing when He blessed us with you.

Words

Not a deep post - but I wanted you all to know how proud I am of this little guy:

At 18 months, by medical standards, he should be saying 10 words.

Now he may not meet all of the physical milestones - but my boy has his 10 words down!

He knows Up, Down, Buh-bye, Uh-oh, NO! (my favorite...or not), Yay!, Yummm, WOW! Mama, Dada, Poop (a close second favorite), Ball, Puppy, Hot, Bubble, Outside, Hi!, Hello, Pop!, Auntie, More, Home, and Bath.

There are quite a few more - but I'll spare you. Point is - I'm proud, and I had to share it with you all!

He also sings "E-I-E-I-O" (see below), and "Twinkle, Twinkle".

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?

Through the eyes of a Medical Mom

I have many people who ask how I do it.

How I handle being a Medical Mama.

Truth is, by the grace of God. There is no other way. Without His help the weekly trips to the specialists at the U would be too much. Our therapy sessions would defeat me, especially when he doesn't do as well as they would have liked.

Once in a while I will ask the "why me questions", but as the days pass I can see different answers to my questions. A big one is contentment. I don't think I would have ever appreciated his milestones (big and small) nearly as much as I do. Each new word and sound thrill me.

I think all medical moms would agree - it changes the way we see.

Instead of feeling frustrated when he won't stop saying "NO!" (even when he means yes), I try to look at it as another milestone reached. As his physical therapist said - he is "right on target" for that! Oh boy!

When he gets food ALL over - like ALLLLL over - we like to say he is experiencing his food. His feeding therapist encourages us to let him do "messy play" with his food. This is messy play folks:

Daily nebulizer treatments are not only good for Gavin's lungs, but they food for my soul - 15 minutes where he sits still on my lap. Most of the time we sit in silence, or we will sing - but no matter what I end up letting my mind wander down the windy, bumpy path that we have traveled. They are sweet moments, and I wouldn't trade them for anything!

His many Doctor appointments, physical therapy sessions, and feeding therapy may seem like a burden to some. They seemed to be at first, but now I see how much they are benefiting Gavin, and now we get excited for them to come.

You see the thing is - healthy kids aren't a promise to us. Getting pregnant is indeed a miracle, and not one to take for granted. I used to see Medical Mamas and pity them - thinking about how awful their lives must be. Don't get me wrong - there are days that are hard and down-right yucky, but I don't want you to ever think I would trade them for a healthier kid. I pray that one day we will be past all of this - but until then I will look for the good in things, find ways to make moments matter, and strive to be an encouragement to others walking this path.
It isn't easy, but I will walk it with joy in my heart and a skip in my step.

Parenting.com

I was, and still am honored that our blog was featured on Parenting.com. Our debut on "Our Mommy Blog Faves: Hospitals and Doctors" segment was HUGE to me since I frequented their website all throughout my pregnancy, and still go there when I want some great tips! (Last looked at: What to do when all your child says is "NOOOOOOO!" Yep - sweet Gavin learned a new word on Friday. As our therapist would say "that's right on target developmentally" - so for that, we celebrate!)

Thanks to all of my family, friends, and strangers who have supported us on this journey. Never did I think we would be so versed in hospitals and all things medical. I can't imagine life without the help of our great Doctors, nurses, and therapists at Amplatz Children's Hospital. Many of you are like family, and we feel so blessed to work with you all!

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!