Last Day

Well, not the "last day." But it kind of feels like it. It's like when you were graduating from college (or high-school, or whatever) and everything was your last - last class, last weekend, last lunch at xyz cafeteria. Remember that? It was super depressing, right? 

Today was a teensy bit like that, except not totally depressing. Ev spent for-e-ver in the bath today, and, ironically, finally figured out how to really, really splash with both her legs and arms. She had music class (loved it, as usual), and played a lot on the floor at home this afternoon. I wanted to give her as much time as possible to be mobile, because it was her last day (for a while at least) to roll around. But I tried hard not to be melodramatic (about it being the "last day"). If you know me, you know that was some pretty hard tryin'. 

It helped that some dear friends came over this evening to pray for her. It was a sweet time (even though I missed most of it to nurse her and put her in bed). Lots of people are praying for a miracle tomorrow. I am too. How awesome would it be if a nurse came out and said, listen, we don't know why, but we don't need to cast her. The hip is a-okay. It would be awesome.

But here's the thing: because I 100% believe it would be possible for God to work a miracle here and heal her hip, I know that if, tomorrow morning, she ends up in a cast - or ends up needing the more extensive surgery, it is because God has a plan for it. No, it won't be fun, and I won't be thrilled about it, but I will chose to trust and remember that God is good. He will take care of his children (and his children's children).

You'll hear from me tomorrow from the hospital. Surgery's at 7:30. Thanks for praying!

Wouldn't it be fun if Ev could update you directly?
We're working on it.

Provision

First things first- the surgery will be at 7:30 am on Thursday. This means we have to be at the hospital at 6 am. Lovely. No feeding her after midnight. Sweet Ev will be so hungry all day Thursday! I have read that babies generally don't eat well for about a day after the surgery because they are still so groggy and therefore don't suck well. Should be fun ;)

God has been providing for us so well. Two clear examples:
1. Ev is on a medication to help her hemangiomas shrink. Look at how well it works:

On her neck - early December

Today! Hardly there!  

When we scheduled the surgery last week, her doctor who prescribed this suggested that we wean her off before the surgery. Every other time we've missed a couple doses or tried to decrease the amount, it's been a disaster. Because the medicine is a beta-blocker, which blocks adrenaline in the nervous system, when you suddenly are not on it, your adrenaline goes bananas. There was a weekend in February when she missed a couple doses and she literally couldn't sleep for more than a couple hours at a time. Like I said, disaster. Also, the hemangiomas started to look a lot bigger if she wasn't on it. But not this time! We cut her dose on Friday and Saturday, skipped Sunday, gave her a little yesterday, and haven't had any since. The hemangiomas aren't growing back, and she has been sleeping normally. Totally not what we expected, but such a relief!

2. We had a check-up today with Evie's dermatologist. When I told her about the surgery, she gave me the name & phone number for the parents of another patient of hers who is a little girl just a few months older than Ev, had the same surgery and got her cast off just last month. It will be such an encouragement to talk to people who have been through this (and at the same hospital and with the same orthopedic practice too!) so recently. I will be interested to hear what advice they have for us.

God is good! We are thankful for all your prayers - they are already being answered.

Preparing for surgery

Typical me, I have a long to-do list to accomplish before Evie has her surgery and gets her cast. I couldn't find a comprehensive list online anywhere, so for anyone reading this who is preparing too, here is what is on my mind.

1. Reserve special carseat through the hospital. Babies in spica casts don't fit in normal carseats. And to save the expense of buying one, most children's hospitals have rental programs. But how awesome is this: the hospital will bring a carseat to her room on Thursday, and then all I do is leave it *at the doctor's office* whenever she gets the cast off. I don't pay a thing, just sign a paper saying that they can charge me if I run off with it. Love this.
2. Order some clothes that she can wear. This is the hardest thing, because what the heck will fit with this ginormous cast?! I actually think I might buy or borrow a sewing machine so that I can make some alterations to larger sized things like pants or skirts to fit around her cast. But I did find some onesies that will fit here: http://spicawear.com. Unfortunately, www.babyhipwear.com is between seamstresses and doesn't have much available. 
3. Buy a beanbag. I've seen online that this seems to be the seating option of choice since it can be molded around your baby's unique-spica-cast shape. I found a light pink one at Target, but it's sort of flimsy so we'll see if it will work.
4. Make a Target run. On this list are:
1. Size 1, 2, 4, and 5 diapers. Seems like a trial and error process to see what works (Evie is in size 3 diaper now and we have a ton already, otherwise I'd be buying those too). I bought Pampers BabyDry for the size 1&2 but Target brand for size 4&5 since it doesn't really matter how absorbent they are (they will be around the outside).
2. Duct tape, electrical tape, or any other kind of waterproof tape to use around the edges of the cast (supposedly you can find these in bright colors that match the cast. We'll see). Note: I did find lots of colors at Target. They even had animal prints and hello kitty options. I did not go for those. I've heard that Nexcare makes good tape but Target did not have it.
3. Poise or Depends. Yes, for my 6 month old baby. Supposedly putting a pad in with the diaper can help with absorption if you're using a smaller sized diaper. And I've seen pictures on others' blogs of lining the edges of the cast with pads for soaking up any moisture and for comfort.
4. A few random sized pillows to use in the crib to prop up her legs and nestle around her.
5. Pants and shirts that are 2 sizes too big (for Ev, that means 18-24 month size) to experiment with dressing her.
6. Infant painkillers, both acetaminophen and ibuprofen. 

Two big things will need to wait until after the surgery:

1. High chair: I've heard that Stokke Tripp-Trapp high chairs work, and there is also an option that seems like it would work on www.adaptivemall.com, but it also seems to totally depend on the angle at which her hips and legs are bent in the cast. We're going to hold off on this since all the options are expensiveo. 
2. Stroller: We were all excited before last week to get a Baby Jogger City Mini. Now we don't know what she'll fit in. Some umbrella strollers are said to work, and there is a brand of strollers made for special needs kids called Happy Tomato that might work. Again, we'll have to wait and see, and hope between this and the high chair we don't totally break the bank.

And a couple things that I would do, but already have/ have done:

1. Help her prepare to sleep in the cast. First is to get her to sleep at a slight incline. She already does this, actually, because mild reflux and congestion plagued us early on and she got used to it. I have a couple pillows under the mattress on one end, and have a quilt under that is rolled so that it sort of cups her body & face (and so she can't roll over). She has a boppy pillow under her bottom to keep her from scooting down. Also is to get her sleeping without being swaddled (because the cast is high, I can't imagine how uncomfortable it would be to have her arms along her side). Until three days ago, I was a nervous nancy because she has *never* slept not swaddled. But God is gracious and good and a few days ago, she just randomly would break out of her swaddle and fall fast asleep quickly. Yay!
2. Get a carrier that we can use. We have the Ergo and I'm hoping that will work.

Oh, and also the obvious - preregister at the hospital, prepare a long list of questions for the nurse or surgical coordinator at the orthopedic surgeon, and pray like crazy!

Count it all joy ...

We have been so encouraged by our family and friends loving and praying for us over the last week. A couple friends have reminded us that James 1:2-4 tells us that when we go through trials, it is our faith that is being tested. I rejoice that God puts challenges in our lives to draw us closer to Him. I want my faith to be tested!

God never promised that our bodies here would be perfect. In fact, Paul writes in Romans 8: "And not only the creation, but we ourselves, who have the firstfruits of the Spirit, groan inwardly as we wait eagerly our adoption as sons, the redemption of our bodies. For in this hope we were saved." The redemption of our bodies is the hope in which we have been saved. Our bodies aren't whole now.

It is a true work of God that Evie's circulatory, respiratory, digestive, immune, nervous system (and all the others too ... I looked them up - did you remember from high school biology that there are 11 systems in our bodies? I didn't) are all functioning - so what if one joint isn't quite right!? And there is more wrong with her body than just this joint. She needs her body - hip dysplasia or not - to be redeemed by Jesus. So we hope for what we do not see - not just for her to be healed, although we do hope for that - but we hope for her to love and trust the God who made her. This is ultimately the most important thing. So we rejoice that it is not Ev's body that is being tested (because she most certainly would fail on many counts), but our faith.

I am fighting every day to remember and rest in these truths. I am not that nervous, nor am I scared. Mostly I am just sad. Sad that I won't be able to cuddle her in the same way, sad to not see her chunky thighs until late-July, sad that she'll be smelly and hot in the cast for the next couple months, and, more than anything, sad that she won't be able to play with her toes (her very very very favorite thing). But I am counting it joy. I am counting it joy that she finally is sleeping without being swaddled - one less thing for her to adjust to after Thursday. Counting it joy that she learned to clap this week - just in time to not be able to play with her toes. Counting it joy that we have friends and family who are standing with us, bathing us and Evie in prayer.

Evie's full name is Evelyn Grace, because we want to see her life (Evelyn's meaning) marked by the abundant grace of God. God has already shown us graciousness in hundreds of ways since we received the diagnosis and scheduled the surgery. So we fight to have faith, because we serve a God who is a heck of a lot bigger than a defective hip joint. Praise Him!

Getting Ready

Knowing that Ev's surgery is less than a week away, we've been trying to cram in lots of things that will be hard to do with her in a full body cast. We're giving lots of baths, rolling & scooting around like crazy on the floor, and cuddling lots with those big chunky thighs. Today was the first nice day we have had in a while (we enjoyed tornado warnings off and on for the last week) and so we went to the zoo!

We had a great time, but I confess that it was bittersweet, since we realized quickly that even on a day like today, when it was in the 70s, Evie got pretty warm (it's all that body fat) and so it would probably be miserable for her with the cast on. We cooled off with water and promised ourselves we'd return every cool summer day and evening that we can.