Saturday, October 3, 2015

Tomita, Toofers, & THANK YOU

Grant had his follow up visit at Lurie's on Tuesday morning where we heard the words, "He looks fabulous!" along with, "See you in 6 months".

Six MONTHS?!  Really?!

Grant and his main man, Dr. Tomita
I was both shocked and excited to be able to make his next appointment for the week AFTER his first birthday hoping to have a much less eventful back half of his first year of his life.

I have to say that I while I've been absolutely thrilled with how well (and QUICKLY!) Grant has been healing, I realized I was breathing JUST a little bit easier after that appointment.  After all, my instincts weren't in full effect when this whole thing started so I just admit to myself I have no idea what to think or expect until I hear it from the people who know what they're doing!

Aside from not sleeping and just a little bit of normal, residual swelling on the back of his head, Grant is back to his absolutely sweet self.  I don't know if it was the hospital stay that threw him off, or perhaps it has been a sore tummy from the antibiotics, but I tend to think we can blame his sleeping issues on a combination of all of the hoopla with the main culprit being these adorable toofers making their appearance in his smile!  It's that smile along with his giggles and sweet demeanor that completely make up for the interrupted nights.

And last, but CERTAINLY not least, I wanted to share with all who have been praying for Grant and our family for the last number of weeks a letter I sent out to all the people who have physically been helping us.  For, as you'll read, it has taken a family of believers and lovers to get us through this and for all of you we are SO blessed and SO thankful......

To know Lindsay Coil is to know I love nothing more than to write a timely, heartfelt “thank you” note upon receiving a gift.  I very genuinely want to sit down and write personalized notes to each and every person who has been an integral part of helping us survive the past few weeks.  The problem, as you can imagine, is time.  It would take me forever and I want to thank you NOW!

While it’s very much NOT my style to write a blanket “thank you”, I came to realize as I pondered what I wanted to say in this letter, that in this circumstance it’s actually very appropriate.  Because, you see, whatever you did, whatever you said, whatever you made, whatever you gifted, YOU worked together as a family of God to help and watch Grant make a miraculously quick recovery.

Maybe you made us a meal or brought a gift.  You may have sent a card or visited or watched my big kids.  You brought coffee or sent words of scripture and encouragement or offered a perfectly, well timed hug.  You prayed for Grant in the quiet of your bedroom or your car or even directly over his head.

You were thoughtful, you loved us, and you kept our spirits up.  And for YOU I am eternally grateful.

Thank you, thank you, a gazillion times thank you.
Thank you for loving Grant.
Thank you for loving me.
Thank you for loving my family.
You are very much loved back.

With All My Love,

Monday, September 28, 2015

My Brave Boy

Let me preface this story by saying I am not shocked nor offended by people who ask me what happened to Grant's head. In fact I welcome it!  It's interesting to me that more often than not, it's a younger child who will be more inclined to approach me. 

But someone made a comment the other day that has stuck with me as a most memorable moment in this journey. 

We were checking out at Walgreens and the young lady behind the counter looked me in the eyes and said, "Wow, what a brave little boy you have there". 

How awesome is she?

I share this because she is such a positive role model for fostering acceptance and compassion.  Stick that comment in your repertoire for the next time you're wondering whether or not you should approach someone. 

After giving her the quick story (yes, yes - Lindsay Coil IS capable of keeping it brief, believe it or not!) she said, "Rock on, Little Buddy, you're a stud."

I completely agree. 

Saturday, September 19, 2015

Half Birthday

Our littlest man is half a year old. 
He's quite an experienced little guy!

Could his shirt be any more true? He sure did nail it!

Imagine my excitement when the doctor came in our room yesterday morning and told us to get out of there and go home! I always make a little bit of a fuss for my kids half birthdays, but this one was extra special in my mind and I REALLY wanted to be home for it. 

It was at his 5 month visit (August 18) we were told to call the neurosurgeon. 
August 20th we met Dr Tomita
August 25th he had CT and bloodwork 
September 11th was surgery 
September 15th discharged from Luries
September 16th admitted to NCH
And finally home for good I HOPE on the 18th. 

That's QUITE a month!

My mom and Trevor came to get us from the hospital. The boys were happy to see each other!

And then I had my friend Katie pick up Mallory from school and take her to Berry Yo so I could surprise her there. 

On the way home she said, "Mom, when Katie told me we were going to Berry Yo my body said, 'Man I wish Mommy could be there'. And then you surprised me!"

Katie's kids were happy to see Grant too although Mallory let them know there were "too many people up in his grill". What a character!

I decided to ignore the piles of laundry and all of the other catch up housework and just spend a fun afternoon with all three of my kids. We baked a skillet cookie for Grant, danced in the kitchen, let Trevor cover himself with bandaids, made popcorn & snuggled up for a movie, and Mallory and I read "just ONE more chapter" four or five times at bedtime. 

It was perfect. 

Grant's swelling continues to go down every day and as it does I see him looking more and more like his brother and sister. 

I am one BLESSED Mommy. 

Friday, September 18, 2015

Still Here

Found out at 6:30pm on Thursday that we were gonna be spending the night here again. All afternoon I had been led to believe we'd be going home. 

Needless to say, I wasn't very happy. 

Dr Jung walked in and talked to us at great length about WHY he was keeping him. It's important, yes. I understand. I get it, but I don't really want to get into the specifics. 

ALL I needed to hear was....

"If it were MY baby, I would want him here."

Thank you, Dr Jung for putting on your Dad Hat for a minute because those ten words resonated with me more than anything about wheezing and bronchioles.

Doug stayed with the baby so I could go home, shower, grab some things, and most of all, SNUGGLE my big kids. They've been through a lot this week too. Hearing Mallory's choked up voice say, "I just want us to be a family again" was enough to make the tears flow. 

But (there's always a but!) her bedtime devotion was focused on allowing God to be in control. We looked at each other and giggled because time and time again her "Jesus Calling" devotion for the day meets us EXACTLY where we're at. 

Biggest victory for the night was the best sleep both Grant and I have had in a week. That doesn't mean I'm not counting down the minutes til my first sip of coffee.  

Thursday, September 17, 2015


Poor Buddy!

Took him to the pediatrician for a nebulizer treatment hoping it would make him a little more comfortable. He has a bit of a cough and some wheezing that was getting progressively worse. 

Taking a conservative approach given what he's been through, we were sent to the pediatric ER at Northwest Community. Chest X-Ray confirmed bronchiolitis, which is basically baby bronchitis. Thankfully he tested negative for RSV and X-Ray showed no pneumonia.   

They decided to admit him for monitoring which I think was a really smart move. Last thing I would have wanted to do was have to rush here in the middle of the night should his condition worsen. 

The worst part of this whole ordeal was watching them try... and fail.... twice. to start an IV. I pleaded to let them try loading him up on pedialyte to hydrate him instead and they gracefully obliged. I couldn't watch another vein blow. I know all too well how badly that hurts!

Long story short, the tentative plan is to be discharged after his 5pm breathing treatment, continuing the treatments every four hours at home. OBVIOUSLY I will stay another night if that's what docs deem safest and best, but I'm ready to be home!

And our Sweet Baby Grant?  He continues to schmooze and flirt with nurses. Everyone here loves him. His personality is DEFINITELY returning and I even got some giggles out of him today!

Wednesday, September 16, 2015

Home Sweet Home

We are home!  This mama is TIRED but my heart is happy. 

We did it. 

Even though it already seems like a dream, we did it. 

When I start to ask, "Did that REALLY happen?", I have proof. Just look at the difference five short days made...

I mean, he was unbelievably cute before, but it wasn't until I put the pictures side by side that I realized just how narrow the top of his head was. Now just look at all the room he has for that precious brain to grow. Might I add, I think he looks pretty darn handsome!

The other proof we have is the very large incision he has across the very top of the back of his head. The one that is strategically placed so well that A) you can't see it from the front and B) doesn't bother him at all when he rests his head anywhere. I didn't know such a spot existed on our heads, but it does!  

Any photos I've posted of him were taken and edited in a way that I felt like I was able to protect him a little bit. Let's call a spade a spade - there were a couple of days there where he looked just plain awful and a little startling. I was used to it because I watched it gradually happen and I looked at him through a mother's eyes. Had you walked into that room over the weekend, he likely would have made you gasp a bit. 

Here's my point - My purpose for sharing this journey wasn't for a medical journal or for shock value. If anyone wants to see the "scary pics", they're out there. They're easily accessible. I saw many of them the night of August 20th, the night I couldn't sleep after learning of Grant's diagnosis and pending surgery. The night I ferociously prayed for comfort over fear. The night I decided that I couldn't do this alone. 

And THAT is why I shared my journey. So that God's Kingdom could come together to praise Jesus in the storm and join me in those ferocious prayers of strength and healing. 

So I'm not posting pictures of his incision. Not because I'm embarrassed or vain but because I just don't feel it's necessary. If you see us, you'll see it!  It's large. Doug counted sixty stitches last night when we gave him a bath, and those are just the external ones. We were told they stitched him up both internally and externally. The back of his head is still very swollen and lumpy and his neck, especially behind his ears, is quite bruised. But he's my little Super Grant and he, no exaggeration, continues to heal hour by hour. 

What I will eventually share on my blog is his scar. I decided during our hospital stay that although it may sound weird, I'm happy he's going to have a scar. Even though it will some day be hidden by his hair, I want him to wear it with proudly. 

I want him to know how strong he was. 

I want him to know he strengthened people's faith. 

He strengthened my faith!

I want him to know all the small miracles we watched happen in Room 1909. 

His scar will have quite the story to tell. 

Monday, September 14, 2015

This Is What Unwavering Faith Looks Like

I knew it would happen...

But I didn't know how amazingly emotional of a moment it would be. 

Just when I thought I couldn't love a little human any more, this boy peeked through his still swollen, but healing eyelids, laid eyes on me, and smiled. My heart soared and I fell in love with him all over again. And I cried like a baby. 

His hemoglobin is up to 9, a really great number. I got to hold him upright and walk around with him for awhile. That felt "normal" and he loved it as much as I did. We also put him in the stroller and went for a little walk around the unit. While we were out we FaceTimed the big kids. My GOODNESS, I miss them so much!  I couldn't be more thankful to my parents for taking such good care of them!

It's funny to watch him look at his surroundings that I've become very accustomed to the last few days. I realized today JUST how expressive his eyes are now that he can use them again. He was making a lot of faces like the one above as if to say, "OH! So THAT'S what this thing on my arm looks like!"

The sheer number of people praying for this boy is overwhelming. Being surrounded by a great cloud of witnesses, I'd think it's safe to say Grant has been running, with GREAT perseverance, the race marked out for him. And Friends.....


Day 4 Excitement

What a morning. 

Not uncommon to craniofacial patients, Grant's hemoglobin dropped to 5.2 requiring a blood transfusion. 

That IV that hung on through the night for pain meds wasn't gonna cut it for a four hour blood transfusion. 

So that meant starting a new IV. I was praying HARD that it would not be a huge ordeal for him knowing IVs were an issue pre op. Just minutes before they came in to start it, I got what I've been waiting for...


Thanks to AMAZING NURSES from both the floor and anesthesia, they got an IV started on the first attempt. It took some doing and a lot of patience, but they did it. Praise Jesus!

They got started around 11 so he'll be done around 3. His hemoglobin will be checked again at 6. Obviously we're hoping numbers will be back to normal. 

So here we wait. 

What a rockstar. 


We had some victories over night. His IV is still in tact. Yay!  That sock must have compressed it just enough to make him more comfortable. 

Because of that, he slept better. And because HE slept better, MAMA slept better!  It may sound silly, but my prayer last night was that I'd get at least one good two hour stretch of sleep so that I could face a new day with endurance to remain faithful and strong for Mr. Grant. 

Not only did I sleep for two hours straight, but after waking late in the 12:00 hour to change and feed him, I then slept for THREE straight hours. It helped that the order for checking his vitals was extended to every four hours. 

First thing I did was look at his heart rate and found it in the 140s & 150s. MUCH better than last night. We are currently snuggled up in the chair and it continues to remain lower. 

If be lying if I didn't say there was a part of me that was hanging on to hope that his eyes would open with the sunrise. It doesn't look like that will be the case, but that's ok!  Prayers have overwhelmed me with patience and I know it will be oh, so worth the wait. 

Praying the next post brings a pic of my smiling son!

Sunday, September 13, 2015

Better By The Hour

I It's gonna be hard for me to go to sleep because it's hard to take my eyes off this sweet baby. I'm not exaggerating when I say I'm watching the swelling subside right before my very eyes. 

The difference in swelling between about 4pm and now 9pm(ish) is incredible! 

This evening his heart rate was running higher than it has been all day. The nurses attributed it to the fact that he's been a little more active the more he starts to feel like himself. I had a hunch that his IV was bugging him. He wasn't crying, but he wouldn't settle down and he was moving his leg kinda funky like it bothered him. It looked like he was pedaling a bike with his left foot. So while I was waiting for the nurse to come back I fashioned a little splint to stabilize his knee. Turns out that IV is in danger of failing sooner than later. Right now he's only got it so they can administer the Toradol. They could switch to oral Motrin but they'd like to keep it in case of emergency. I'm praying hard it hangs on because I REALLY don't want to have to watch them start another one. 

My splint seemed to help, but it was when the nurse covered the whole thing with an adult sized hospital sock that he really settled in. 

On that note, I'm gonna try to get some sleep while he's resting so peacefully!

I CANT WAIT to see him smile. Praying that will happen by morning.

Turning a Corner

We're starting to see glimpses of our Buddy's sweet personality. Some of my girlfriends stopped by today. Being the Ladies Man that he is, he was showing off a bit before they left; grabbing on and sucking his toes (which he was doing a lot of last week) and babbling. 

Prior to that I had spent the entire morning, like from 6am until around 1pm, snuggling him. When we put him down to change his diaper it was very obvious that his swelling was favoring the side he was snuggling on, which is OK, but I decided to put him down for awhile to even him out a bit. 

He hasn't been eating a whole lot, but we've attributed that to the fact that he's been on IV fluids. Between the swelling and the fluids he is weighing in TWO AND A HALF pounds heavier than normal. We've been calling him our little Sumo Baby. This morning they cut the fluids in half and sure enough, like they hoped, he's picking up on the eating front. So much in fact, that as I type this they're taking him off the fluids completely. Yay!

He's SUPER comfortable in his bed thanks to the "podster" Grandma Maegdlin bought him last weekend. Everyone around here wants to know what it is and where it came from as it's perfect for recovery. It's basically like an inclined bean bag chair with a hole in the middle. Add GiGi and his fleece blanket from Mallory and it's been the perfect place for him to recover. 

So we continue to wait. And pray. Although isn't it great that now our prayers include more "Thank Yous" & "Hallelujahs" than "Pleases"?  

Ann & Robert H. Lurie Children's Hospital

Grant was super agited this morning and I finally realized the light from the window was freaking him out. His poor eyes. :( 

GiGi to the rescue!  His "Gigi" is his giraffe lovie from my friend Angela (Gig). The name GiGi came from a "G"iraffe from "G"ig. All of my kids have them. 

It is amazing what a comfort item it has been to Grant the entire time we've been here. Dr. Roth, his anesthesiologist, even noticed how much he loved it and let him bring it into surgery with him.  It's funny that the nurses even know it's his "Gigi" and will call it by name. 

Which leads me to the point of this post. 

This place is amazing. 

This handprint is everywhere. And while it's not stated as such, I look at it and see a hand of God working through everyone who works here. 

Doctors, nurses, residents, NPs, PAs, techs, secretaries, security guards, hospitality staff. Everyone we come in contact with shows us they are the hands that work God's miracles here every single day. 

Lucky. Blessed. Fortunate. Call it what you want, if this had to happen, we are in THE BEST care possible. 

It makes me proud that we've been supporting a place in the past that is caring for us in the present. Better believe we're excited for what we can do in the future to continue our support!

Day Three

Good night for our Little Champion Fighter. 

I'm confident we've seen the worst!  
I'm praying for, but not counting on, him to be able to peek at us by the end of the day. If not, we should see those baby blues tomorrow. 

He Hears You

My Beautiful Prayer Warriors,

Night Two is going so well. Grant's restless periods are shorter. I'm comforted that his pain is in check.  Because I had been staring at him all day I can look at him now and know that it appears that the healing is about to begin. 

And this mama? I've been sleeping much better than I had expected. 

I was about to fall back asleep as this song started playing on Pandora...

Hallelujah is right. 

I may have truly rested on those words had Grant not kicked off his pulse ox monitor. Again. Stinker. 😉

Saturday, September 12, 2015

I May Eat My Words, But....

I'm really starting to feel like the worst is about to be behind us. 

He's down to one IV. It's been hours since he's had any pain meds stronger than Tylenol so we just gave him a dose of Toradol which is IV Motrin. This way we can start rotating Tylenol and Motrin every three hours. A regimen we can continue at home. He's super antsy and uncomfortable but he really doesn't seem to be in a lot of pain. How that's possible, I have no idea, but last night and this morning it was very apparent he was in pain so administering morphine was completely rendered. I didn't want to give him something that strong today if we didn't have to. 

After they took out the IV on his right foot we noticed his cute little ET toe. 

He's REALLY swollen. Like, "are you sure that's my baby?" swollen. Earlier this afternoon his eyes swelled so much that his eyelids started to curl up like they were about to turn inside out. We were actually warned beforehand by our nurse that it was a very good possibility it could happen and that it was "normal". Nineteenth floor of Lurie Children's definition of normal is a bit different than my every day definition of normal, I suppose!

He and I had some super cuddle time from 11 til around 2:30. In the midst of that is when the swelling got bad. We could just tell it was scaring him. He and I spent much of the next 2+ hours forehead to forehead as that was the position that made him feel most calm. Anything for my fighter!

As you can see in the picture, they took the dressing off his head. It's amazing to me that even though Grant's face and head are incredibly swollen, it's already very obvious that the frontal bossing of his forehead is totally gone. It makes me excited to see what the rest of his head will look like as the swelling subsides. 

He didn't eat much today, but he's still getting IV fluids and his nurses said that babies tend to not want to eat when swelling peaks because it's uncomfortable for them. He just ate better than he's eaten all day giving me one more reason to think he's about to kiss the worst of this goodbye!

I'm thankful my mom and Mallory came up today. I miss my big kids!  

Praying for some sleep tonight. I'm not sure what I'm running on at this point but I'm thinking its adrenaline, caffeine, and Jeus!