Thursday, October 22, 2015

Oona 2.0 (2 Weeks In.)

Hello again, after another long absence! Everyone's just fine, it's just been a long (still ongoing) adjustment and between exhaustion and numerous distractions I've become horrible about updating on any platform besides Instagram! (If you don't follow me already over there, my username is @jacquelinef - I'm a huge fan of Instagram and try to post at least once a day!)

I've been calling Oona "2.0" because in some ways she seems like a totally new kid now, though in the most important, intrinsic ways she's still our same old Oonie.

I've had several people ask me what's been the hardest part of this journey, and without a doubt the worst of it was the anxious waiting period before the surgery. Not knowing what to expect always makes me anticipate the worst, and then I become a nervous, emotional wreck. Olive was also a nervous wreck as we waited for the surgery, having occasional nightmares and emotional breakdowns as she worried about the impending surgery. By the time the surgery date arrived we were more than ready to just get it over with!

Oona's last walk, going across the skybridge to Helen Devos Children's Hospital.

Oona with her lucky mustache, playing before surgery.

Oona's surgery was at the Helen Devos Children's Hospital, in Grand Rapids. We were blown away with the quality care she received there. All the staff, from nurses to anesthesiologists were great with Oona and with explaining every step to Matt and I. They allowed our pastors (all three came!) to sit with us up until she was rolled into the operating room. They had the most fun play room right next to the operating room that Oona could play in while we waited.

The second worst part of this journey was kissing Oona goodbye as she went into surgery. I almost couldn't post this picture because it makes me cry whenever I look at it. I found out for the first time how indescribably awful it is to watch your baby rolled into a room for surgery, knowing you can't go too. I know I'm incredibly lucky and blessed to have had such healthy kids, and that there are so many brave parents who have to go through this numerous times. My heart breaks for them, as well as applauds them for the huge amount of courage it takes!

Compounding my feelings as I watched Oona roll into the O.R. was knowing that when she came out, she'd be in the Spica.

We were told to expect Oona to be in surgery between 3-4 hours. Her surgeon was expecting to have to make three separate incisions and scrape around the ball of her hip and the socket in order to get it back in the right place. He also prepared us for the possibility of having to shave off the top of her femur if re-setting her hip proved extra difficult.

So imagine our shock, when not fully 2 hours into her surgery her doctor came out to the waiting room where we were sitting to tell us that he had been able to easily set her hip with just one small incision to loosen the muscles and ligaments around her hip! He told us it was extremely rare to be able to set a walking toddler's dislocated hip so easily, and that in the last 18 years he's been practicing, he had seen only one other case like Oona's 18 years ago! It felt like a miracle to Matt and I. While Oona would still have to be in the Spica for 3 months, her recovery pain would be extremely minimal and the actual cast would not be quite as extreme as we had been prepared for.

When Oona came out of the anesthesia, she was freaked out and emotional, but as soon as we were able to hold her on our laps she calmed down and eventually was her same old self. Matt and I were a little overwhelmed with how awkward and heavy the Spica was (it added about 8-10 pounds to Oona,) and I did have a moment or two where I felt panicked "how are we going to do this?!" We just kept going back to what we had seen the Lord do for Oona through surgery, and trusted that He would work this out for His good in His time.

Oona in her special, loaner car seat that allows her to ride in the car with her cast. 

Waiting for XRays and CT scan.

The last two weeks with the Spica cast have had their ups and downs. I'll start with the positives:

-Diaper changing, which requires a very different method than normal diapering, (Google "Spica cast diaper changes" for more info,) has gone way smoother than I ever expected. We are lucky that Oona's cast is lined with plastic, which is easy to clean up whenever we have the occasional leak. We have been vigilant (meaning, slightly obsessive) with keeping her changed often and dry. After every change, we spend time blowing everything dry with a hair dryer. Yes, it looks ridiculous! But so far, no odor at all, and Oona has not had any sores or rashes, (thank You, Lord!) 

-Sleep has mostly been better than expected! This was a huge answer to our prayers, as going into the surgery we were already sleep deprived (Oona would wake up at least twice a night) and we were expecting sleep to be worse with the Spica cast. Believe it or not, sleep has overall been a little better with the cast. We've had a few really horrible nights where Oona was having leg spasms, which is normal coming out of surgery with such a big cast, but most nights she sleeps comfortably from 8 to 6:30 with one short nap during the day. The trick here was getting the right pillows in the right positions to keep her cool and comfortable. The first week, we had her on a bean bag which could be molded around her head and hips in a way that she was very supported, but last week we moved her to a wedge pillow under her head and back with two regular pillows supporting her legs. This has kept her cooler and allowed her more room to shift around a bit during the night.

-Matt built Oona an amazing wooden rocking chair with a tray, that has changed our lives! The way Oona's cast is positioned she can not sit up straight in a regular chair, which meant she is either reclined on a bean bag or sat on our knees. Meals were a nightmare, as you can imagine, and Matt and I were sore from supporting her most of the time. The special chair allows her to sit up at her own table top, as well as rock! She spends most of her time in her chair. If you are reading this and have a child going into or already in a Spica cast, I highly recommend looking at Ivy Rose Spica chairs. They are very similar to what Matt built for Oona, and will make this whole experience SO MUCH BETTER. Pinky promise!

-We were able to get Oona in her stroller, with the help and support of a couple of pillows, which has meant we can go out for walks! This cheers her up more than anything else. She loves being outside and when we figured out we could still go on family walks, I took a deep breath and sighed "alright - we can do this thing!"

-While I don't know for sure if this is attributed to the Spica cast treatment, we've noticed Oona's vocabulary has exploded in the last two weeks! She's speaking in simple sentences now, and communicates much more than she ever did before.

While the positives have been numerous and definitely outweigh the negatives, here have been our challenges:

-Boredom. Oona gets bored so easily. She's never cared a whole lot for TV (she has been paying more attention since getting into the cast, but not more than 20 minutes or so at a time.) She's received so many wonderful blocks and legos and small toys, but she gets tired of them quickly. That period of time between 4pm and 8pm is awful as she just wants to do the things she can't and the only consolation is having Matt or I carry her. Which leads me to...

-Time management. I feel like if my attention and time equals 100%, the kids are requiring 120% and I constantly feel like I'm failing one of them (or Matt.) Trying to get dinner on the table, homework done, and keeping Oona content is hopeless battle. There's a lot of evenings where I have to tell myself "ok, we're in survival mode right now, and it's not going to last forever, so pizza delivery isn't going to ruin the children!" ;-)

-Trying not to spoil Oona. I wouldn't care so much about this, except three months is a long time to be in a cast, and I want to keep our standards as normal as possible, for all of our sakes! It's harder on Matt and I than it is on her. Often this looks like walking away from her while she's throwing an epic tantrum. I feel sorry for her limitations, so it makes me feel like crap, but I know my feeling sorry for her is the worst thing for her. She doesn't need that! There's been so many hard lessons during this process! I'm choosing to be thankful for them.

-Physical exhaustion for Matt and I. I don't know why, but even though the kids are sleeping ok (knock on wood,) we always feel so tired. My body is sore from lifting and carrying Oona around (she weights close to 40 pounds right now,) and I can feel the strain in my back, chest and shoulders. Matt is exhausted mentally with work and heavy responsibilt

-Getting out of the house. Yes, we can take Oona out in the car and stroller, but she can't do normal things like sit in a cart at the food store. This means that either Matt or I stay home with her while the other does errands, unless it's the weekend and we can go together. I hate this, because I know Oona loves to get out, but I just can't manage her and the other kids out of the house by myself right now. We also really miss doing things like going to church on Sunday mornings, or the morning women's Bible study I usually attend, but I can't leave Oona in the nursery with her cast. It's another trial that requires me to keep focusing on the big picture - yes, this is a long time, but there is an end in sight. We can make it.

-Marriage. Ha, this one is uncomfortably personal, but Oona's surgery and treatment and all the changes have definitely given our relationship some challenges. Our fuses have been shorter than normal. We don't get any time alone. I am very guilty of feeling bitter at times that his life continues fairly normally with work and outside-the-house activities/responsibilities while I've had to give up pretty much everything to give Oona the round-the-clock care she needs. I hate that I fall into that, but I'm a sinful human who needs a lot of grace.

Sorry to anyone still reading for how lengthy this has become! I guess to sum everything up - it's been a bumpy road, but the Lord has used everything about this process to show us in incredibly personal ways how much He loves us. We are learning so much, and we feel humbled. Oona's going to be ok, and Matt, Olive, Silas and I will be too. I'm thankful that He chose for us to go through this as a family, because I can see His goodness through it all. Thanks for reading!