from the inside looking out...

Hi Friends!

I am happy to say, I really don't have much to blog about! Evie is doing good... she had some vomiting today, but the doc thinks it's just from an antibiotic, and since we stopped giving it to her she has kept her pedialyte down.

I have been dealing with an interesting dilemma lately... Evie is not really into hats. It's 90 degrees... but Evie has a scar on her head from ear to ear. You know, I'm not really sure what the proper societal thing to do is. On one hand I feel like, Evie doesn't want to wear hats, deal with it everyone! On the other hand, we get enough stares. It hurts me more than it hurts her, but it hurts.

Walking out of Applebees on Tuesday, I heard a lady say to her co-diner "Look, that baby has cancer!" I get it. She's on oxygen, her eyes are a little bruised, she's wearing a cap in the middle of the summer. But it sunk in. Deep. I read a great blog post a few days before called "Please spare us the pity stare" This being my favorite part:

Believe it or not, I do not actually consider either of us worthy of pity. My son may not be your idea of "typical" but he's still an awesome kid. I don't want him to grow up feeling pathetic. He needs confidence, and lots of it. He deserves respect and dignity, hold the pity. Same goes for me. I am perfectly content with this child of mine. He's beyond adorable, he's bright, he's got a huge personality, he makes me laugh, he gives me tremendous pride in his accomplishments—you know, just like any other kid. I'm not saying my life is easy. I'm not saying that I don't cry over what happened to Max. But we have ourselves a good life. A life not to be pitied.

I am so thankful for the blogs of other women who have kids who are differently abled. Women who are years farther ahead in this journey than we are. I want to raise Evie to be comfortable and confident in her own skin. I have thought about looking for books about how to raise kids with special needs, any recommendations?

Thanks for listening friends (: Love you!

PS - Now that Evie's swelling is down I'm working on a before & after post... she looks AMAZING!!

better every day...

We had a great weekend. Two days of beautiful weather, swimming, and relaxing with my girls. Managed to get a little laundry done... AND made it to church this morning! Nothing better than filling up with God's word and Evie getting some loving from her friends. (i'm starting to wonder if I have any friends, or if people just like me because of this cute bundle i have constantly hanging in my sling!?)


Love you friends!!!

dad & his girls

Evie snuggles

pool time!

Psalm 16
9 No wonder my heart is glad, and I rejoice.
My body rests in safety.
10 For you will not leave my soul among the dead
or allow your holy one to rot in the grave.
11 You will show me the way of life,
granting me the joy of your presence
and the pleasures of living with you forever.

Thanks for the awesome message Pastor Tim!

it hit me...

You would think that the minute I said goodbye to Evie last Friday it would have hit me... she was having brain surgery. Her head was going to change shape. It was going to swell. She was going to be in pain. She will have a big scar across her head. Her eyes will be bruised for a while. She isn't going to feel too great. She's going to need extra loving. This isn't going to be easy.

I had a few little crying moments at the hospital... but today was the first time I really cried. We have been out and about since Wednesday, seeing neighbors, going to the store, going to the pediatrician... and how many times can you say "oh, she had brain surgery" without falling apart? About two days worth of times. I'm not sure why I thought things were going to get back to normal so quickly. It's just going to take some time.

It's hard to get looks of sadness when people look at Eve, only because they don't know where we may have been... or could be without treatment. It's hard for strangers to understand how WELL Evie is doing when all they can see is a giant scar and a little girl with two black eyes. If only I could sum up her extraordinary life in a few seconds.

it WILL get better. So thanks for praying, listening, encouraging, crying with me.

Love you friends.

deep breaths of fresh air...

Hi Friends (:

Well we are no longer in the hospital, so I feel like we can drop the "post-op" blog titles. It's hard when you are inpatient to even remember what day it is, but now that we are no longer on O2 sat monitoring, vitals every four hours, and laying in a bed waiting for swelling to go down, I feel like our post-op days are over (:

Today was awesome. I woke up with a screaming headache, but just knowing we were going home and that Evie is healing so wonderfully was fantastic. We were checked out around 10:30am, and even ran into some friends in the hospital lobby on the way out. It's a blessing having friends to journey through the hospital stays, surgeries, and lab draws with. Can't help but love these kiddos who survive the unimaginable with wide eyes and smiles.

SO THANK YOU for praying, checking in on us, and encouraging me as we went through this weekend. I actually remembered to charge my iPod before going to the gym today, and had to leave one of my earphones out so I didn't accidentally sing my worship music out loud. Breathing fresh air after being shut in for 6 days felt like heaven. I could have sat outside and taken deep breaths for hours. We have been anticipating this surgery for so long, and to have BOTH of my sweet girls home tonight is such a relief and blessing.

I am so proud of Evie, I can't wait to take her out and show her off. Her smile in the midst of healing brings tears to my eyes, and healing to us both.

Love you friends! Will update with new photos tomorrow (:

post-op day 4 continued (:

Hi Friends!

We had a great day, Evie opened her eyes more and more throughout the day, and felt so good tonight that she could hold her head up, and we even went for a walk around our floor! It was so great to take her out of our room. Blessings, blessings, blessings today.

As long as her hemoglobin level stays up we can go home tomorrow! The body is a mysterious thing so who knows... but there really isn't any reason it should go down overnight (:

Thanks for praying everyone! I can't believe how fast this weekend went, all of the emotions involved, and how much I can't wait to GO HOME!

Love you!!!

afternoon nappy

Lyla reading to Eve (:

I can't wait to go home so they can play again!

family walk before John and Ly went home for the night.

post-op day 4

mid morning magic!! open eyes and a little smile (:

post-op day 3...

Hi friends (:

Quick update before bed:

- Evie opened one eye today! It was barely open but enough that she could see us, and reach for things. Such a nice change.

- Her hemoglobin (blood stuff) dropped to 4.5 today, which is odd 3 days out of surgery, so she had to have two transfusions to raise her number. They will check her again in the morning to see if she needs more blood.

- Swelling is much better. It doesn't look "good" but it's a lot better than yesterday! We only had to give her IV pain meds once this afternoon, so that is a big improvment.
- With her hemoglobin being odd and her not wanting to eat, it looks like we will be going home on or around Wednesday. Yesterday they thought we would be leaving today... but I'm glad we have a few extra days to get her eating and more comfortable... and a few more days for us to ask questions since the doctors are all at our fingertips here.

Thanks for praying! It was so so so wonderful to see my little girl again inside her big puffy head.

Love you friends (:

eve and i taking a rest

ly and i took a break and got our toetoes painted! thanks for the giftcard ODSPN moms! you rock!

post-op day 2...

evie and hillary hippo (:

A necessary bummer. That's the best way to describe today. I woke up this morning to Evie moaning "mamamamamamamaaa" she was just in so much pain. I guess she did it most of the night but the nurses let me sleep. After we got the pain under control the doctors were doing rounds, saying she looked great, and we would probably go home tomorrow. I don't know if that will happen... later in the day we realized she had only eaten 7 ounces total most of the day, so we had to put her back on IV fluids... a necessary bummer. I spent most of the morning trying hard to keep Evie calm and keep her room quiet so we could do oral pain meds and wouldn't have to do morphine but in the afternoon her pulse was racing and the nurse said she was probably in pain so they gave her IV morphine right before they started fluids... another necessary bummer.

Tonight she has been doing okay, she is just SO SWOLLEN. The swelling has moved down from her forehead into her eyes, cheeks, and even around the back of her head so that her ears are turning in. I just feel so bad for her, when she wakes up she so desperately wants to open her eyes.

A friend from MOPS sent me this verse tonight, and it so fit our day:

¹⁷ Even though the fig trees have no blossoms,
and there are no grapes on the vines;
even though the olive crop fails,
and the fields lie empty and barren;
even though the flocks die in the fields,
and the cattle barns are empty,
¹⁸ yet I will rejoice in the Lord!
I will be joyful in the God of my salvation!
¹⁹ The Sovereign Lord is my strength!
He makes me as surefooted as a deer,
able to tread upon the heights.

I had about 20 minutes to spend outside with God this morning while Evie was sleeping, and it was so wonderful to rejoice in the Lord. to be joyful in the God of my salvation. There were very few blossoms today, but we will be able to tread upon the heights with sure footing until we get outta here (:

Love you friends!

Lindsey

post-op day 1...

I considered naming this post "don't rock the boat" because that's how I feel today. Evie is swelling swelling swelling, but her pain has been kept very much under control. I am doing good also, this is the first hospitalization where I felt somewhat prepared. My sister offered to watch Evie so I could go to church in the morning, and my first thought was "you're doing good Lindsey. don't rock the boat." It may sound kinda weird, but for those of you who have been hospitalized, when you leave you're are looking at everyone moving around you like 'hello! did you know my baby had her skull cut into 20 pieces?? slow down! appreciate your day!' So instead of risking getting emotional, I'm going to stay here with my girl.
.

In post-surgery news, the surgeons are very pleased with Eves surgery, the swelling is normal (not normal looking... but supposedly normal), and she will probably get her drain out, and turban cut off tomorrow morning. She ate well all day, but stopped eating around 2:30pm and vomited around 7:30 so they are going to put her on IV fluids. I am afraid that the fluid will cause her to swell more, but she can't not get fluids, so that is our best option right now.
.
AND.. pictures.
.

The first set are Brian's, that he took before, during, and after surgery yesterday.

playing in the yard the night before surgery...

"circle prayer" before bed

saying goodbye...

the worst part of the day...

surgery

out and beautiful as ever!!!

it felt SO. GOOD. to be with her again.

these are pictures from my phone... so you can see the progression of Evie's swelling.

in the pre-op area (: my smiley girl as always!

right out of surgery, around 1pm Friday

she couldn't wait to eat!

Saturday morning, a little puffy....

... and Saturday night (tonight).

the swelling is actually supposed to peak tomorrow, but I'm praying that it's done... I really don't know where more fluid would go. She is starting to get a little splitting of the skin under her eye, if it separates any more they will call the plastic surgeon to check it out.

Thanks for praying, and for your encouragement. I can't believe how many emails, comments, and facebook posts we have gotten all week, especially the past two days. It has made this surgery bearable, and good. I can feel God's blanket of prayer and protection around us all, especially Evie.

Keep it up!!!!! LOVE YOU friends (:

Success!!!

Have you seen a more beautiful little girl???

Evie's surgery went great... not exactly as planned, but nothing bad. The docs went in with the intention of cutting her forehead bones into 3 pieces... and instead cut about 20! She had a little more pressure than that thought, and so they worked their way toward the back of her head and cut the bone into more and more pieces to give her more space. She had to get blood transfused during surgery and is continuing to get blood even now. She has a small fever, and her heart rate is a little fast, but the docs aren't concerned. That little reddish black line coming out of her pink head wrap is a drain that is attached to a little grenade looking container that continually drains blood/fluid to relieve pressure.

If all goes as planned we will move up to the "normal" floor (from the ICU) tomorrow afternoon.
So all of our prayers were answered.
1. She was already asleep when they did her IVs.
2. She was so entertained by her crib and all of the attention she was getting that I did more crying than she did when they rolled her to the OR.
3. Brian took photos during the surgery, and couldn't believe how well the doctors worked together and what an amazing team they made.
4. Evie was losing quite a bit of blood at one point, but the docs took a break, infused a little extra, and it wasn't a problem.
5. I wasn't in the OR, but everyone seemed to be thrilled about Evie's surgery and the outcome. As you can see, she looks AMAZING! Even a little more like Lyla maybe! My beautiful girls!
6. As far as a quick recovery goes, the swelling is supposed to really set in the next couple of days. Gma Dellie and I picked out a beautiful colorful butterfly balloon for her to look at when she can get those pretty blue eyes open for a little longer.

So far Evie has just woken up about every 5 minutes with little moans and groans. I asked the nurse if she had a "headache" and got one of those "really!?" looks from everyone around me... duh! So PRAYERS for the pain to go away quickly, along with the swelling would be WONDERFUL.

I can't tell you how much I love each and every one of you, and how much your prayers mean to us. Love you!

surgery eve...

Hi Friends (:

We head into Children's tomorrow morning at 6am, surgery is at 8am. The surgeons said it takes 4-5 hours to complete.
A few prayer requests going in:
1. That they can get Eve's IV in smoothly... it's not fun when they have to try several times.
2. That she's not scared when she goes back.
3. Wisdom, knowledge, skill for the surgeons and medical team.
4. Stability for Evie's body during the procedure.
5. That God's presence will be felt in the surgery and recovery rooms.
6. Quick recovery!

I'm not sure if I have explained the actual surgery that she is having... the short version is that they are going to make an incision from ear to ear, and cut her forehead bones into 3 or so pieces, take them out, reconstruct them with space in between, attach them with dissolvable plates and screws, put it all back in, and sew her up.

She will have drains coming out of her incision for the first day, and from my understanding when they take the drains out is when the swelling is the worst... around day 3-4 post-surgery.

I will update from the hospital, but seeing we have to be there at 6am tomorrow (which is like the middle of the night for people in this house!), this will most likely be my last post before we go.

Thanks friends, Love you (:

Isaiah 40:

²⁸ Have you never heard?
Have you never understood?
The Lord is the everlasting God,
the Creator of all the earth.
He never grows weak or weary.
No one can measure the depths of his understanding.
²⁹ He gives power to the weak
and strength to the powerless.
³⁰ Even youths will become weak and tired,
and young men will fall in exhaustion.
³¹ But those who trust in the Lord will find new strength.
They will soar high on wings like eagles.
They will run and not grow weary.
They will walk and not faint.

Countdown: 2 days

Hi Friends (:

What an awesome day... the girls and I stayed home, Evie had therapy in the morning, and we spent the rest of the day cleaning, packing, and getting ready. This is the first time I've actually gotten to "pack" for the hospital, which is a nice change, but brings back the reality that we are actually going.

I showed Lyla a picture of a little girl with a scar from the surgery, and she didn't seem too bothered by it. Evie is having some weird movements, and her neurologist would like an EEG, but they can't get it done before surgery, so let's pray that doesn't become a complication.

Lastly, I want to thank my grandparents who took us out for a wonderful dinner tonight, AND I just got an email that a Bible study group from our church has paid to have our house cleaned next week while we are gone! WHAT a wonderful gift, and one less thing for me to worry about tomorrow. THANK YOU!!!

We got final approval from insurance today that Evie's surgery is covered, so I think we are in the clear in all areas.

Thanks for praying friends, we are truly blessed and protected by a big God!
Love you!

Countdown: 3 days

We had our pre-op History and Physical today at Dr. Pats... and it was all good news!
- Evie weighed in at 11lb 15oz, more than ever!
- She doesn't even have a hint of the sniffles
- She is in primo condition for surgery.

After our physical, we stopped by a friend's house whose brother in law is a pediatric neurosurgeon in Canada, and he said for a kid that needs craniosynostosis surgery Evie's face looks really good, and since she's so little they won't have to cut her skull into too many pieces. Sounds good to me! It was nice to talk to a person in the medical profession on a social level to ask questions in a not-so intimidating setting.

All in all a good day! I tried to explain Evie's surgery to Lyla, so that she would know they are going to shave her head, and she will have a big boo-boo when we come home. A few minutes later I told her I head a headache, and she told me "I'm a doctor" and began dramatically touching my head... "You need surgery. We're going to cut your head off, put a ponytail on it, and put a headband on like Nana." I'm glad she's not too worried about Evie's surgery (:

Love you friends!

Countdown: 4 days

Hi Friends (:

Well we are here... surgery week! I am feeling really good about things, and more importantly both girls are feeling great. No sniffles, nothing.
We have Evie's Pre-Op History and Physical tomorrow with our pediatrician, get some blood taken Thursday afternoon so they don't have to do it on Friday, and go in Friday morning at 6am... surgery at 8am.
I am planning on enjoying this week, it felt really good to get out the details of my fears and let them go. My dear friend Bethany reminded me to pray that God be with Evie when I can't be. With all of the prayers she has been receiving I'm sure Evie and God know each other pretty well (:

AND, Evie got her first tooth this weekend, with a second coming very close behind! I'm glad we were in my mom's backyard and not in public because I'm pretty sure I was about 50 times more excited than a normal mom would be (: These little milestones for Eve just seem so big. I would try to take a picture... but it pretty much looks like a little white line in a big pink pool of drool (:

So 4 days to go... keep praying for good health, and that John and I give up our worries.

Love you friends, You're the best!
Lindsey

pray it forward...

Hi Friends (:

Evie and Lyla have had a good weekend, I am feeling much more at peace with surgery than in my last post. And they are both healthy, Evie's cold is almost completely gone (: Thank you for praying for us, I am feeling the downpour of blessings!
I know there are other bloggers out there who have passed on our story and asked their readers to pray for us, and I would like to pass that on today.

I have two friends who are having especially hard weekends, and I'd like to ask you to pray for them.
- My friend Ashley found out her son had Trisomy 13 and an abdominal wall defect about half way through her pregnancy. She and her husband Keith decided to continue the pregnancy, and Ethan was born an angel on Tuesday. His memorial service was yesterday, and I can't explain the heartache I felt as Ashley and Keith grieved the loss of their son.
- My friend Lindsey's daughter was born a year ago today, with a heart abnormality called hypoplastic left heart. She fought through surgery and weeks in the NICU and got to spend some time at home with her family, but passed away in early September of last year.

If you could pray for Ashley and Keith... Lindsey, Ian, and Evie their older daughter this is an especially hard weekend for them all. Although they both know their children are celebrating in Heaven with perfect bodies, it is still so unbelievably hard for them here, waiting to hold them again.

Thanks friends, Loving you, and praying with you (:
Lindsey

the prodigal daughter...

Hi Friends (:
.
I've been thinking about surgery a lot lately. I decided the day it was scheduled that I wasn't going to worry about it until a few days before the actual surgery date, but I've been breaking my own rules. When Evie wakes up in the morning I let her play with her feet and talk to her blankie for a couple minutes before I pull her into bed to cuddle with me for a while. The past couple of mornings I have found myself snuggling in close, rubbing her head, and being sad. Crying. And worrying.
.
So I'm going to get it all out there and when I'm done, nail it to the cross. When I was at youth group at some point in my adolescence, they put a cross at the front of the church and we were challenged to take a small piece of paper and write down a sin or a burden and nail it to the cross. I didn't do it at the time because I knew the youth pastors were going to take our papers, decode them and tell our parents... but in my wise old age I'm finally getting the purpose of this exercise. And I'm burdened with worry. So here goes:

1. I'm scared to be away from Evie when she has surgery. Besides her port placement, and MRI I have been able to go with her to all of her tests and procedures. I keep picturing them taking her away from me. It will be hard. And awful. I'm scared she will be scared too.
2. I'm scared they will call Code during her surgery. She has "coded" twice... once at Children's and once at the Med Center, but I was with her both times. This time she will be with a bunch of strangers. And I'm scared.
3. I'm scared they will nick this huge vein on her head. I've been assured they will just "tie it off" whatever that means, but it's huge, and it's right about where they are going to do her incision, and I don't like it.
4. I'm scared they will damage Evie's brain. I keep worrying that she will come out of anesthesia and not be able to smile, or remember who I am. Is it likely? Probably not, but I'm if I'm going to be honest, I'm honestly scared.
5. I'm scared that I won't be able to handle watching her head swell, and be in pain.
6. I'm scared that she will have this scar, and be angry with us when she's older that we let someone operate on her head.
7. I'm scared that something will go terribly wrong. That the surgeon will walk out, take off their scrub cap, and shake their head.

Psalm 56
3 When I am afraid,
I will trust in you,
In God, whose Word I praise,
In God I trust, I will not be afraid.

I've been thinking a lot about my friends who haven't trusted Jesus as their Lord and Savior and the image of the "prodigal son" keeps coming back to me. The son who spent his inheritance on foolishness, and begged his father to let him come back to be his servant. What did the father do? He threw a feast in honor of his son. To welcome him Home. Happy that he was back. I think about the joy in Heaven, the happiness of God himself, the angels dancing when someone becomes a servant of God and comes back to the family they were meant to be a part of.

Lately, I am feeling like the prodigal daughter. I haven't spent my inheritance on women and drunkenness (ha ha), I haven't intentionally run away from God... but I so often try to take on the world by myself. I take on the weight of a situation that isn't in my hands. I don't take the time to fill my heart with God's Word because I think I'm busy. Or I'll do it tomorrow. Or I'm tired. And the result? Worry. Stress. Impatience.

So here I am God. Asking to be your servant again, to fill me with a feast of Grace, Peace, Kindness and Comfort. And you promise to take care of me... and Evie. Again. and again. and again.

*nail*

Summer Pictures

4th of July

(Evie, Lyla, and Henry)

pool time!

Evie and us on date night (:

Thumbs Up!

Hi Friends (:

Thank you for praying for Evie's health this week... Tuesday she was NOT doing good.... we took her to see her pulmonologist, who tested her for everything from RSV to Whooping Cough. So far all of the cultures have come back negative, but her cough was giving us quite a scare. Fastforward to Thursday and she was my little glowing girl again. Two days of prayers can make quite a difference!

She still has a cough, but it's fewer and farther between. We have been doing breathing treatments, using her cough assist device, and suctioning her out quite a bit, but at least she is her kicking, talking, smiley self again.

Evie has also been wearing these little neoprene gloves that her OT made for her, and she is finally using her thumb more! Thumbs up for that! She used to keep her thumb tucked in, and try to grab things with her 4 fingers, but finding her thumb has sure made a difference (:

Have a Happy 4th everyone! We are going to get out of the house this weekend, play at my grandparents today, and hopefully watch a parade tomorrow if it doesn't get rained out.

I have a longer post brewing in my head, but we'll get to that next week (: Love you friends!!!
Lindsey