Casts Off

Anna's procedure went well and we are all home resting up. The trip was long but good- I rode in the Shr*ners van and stayed right at the hospital. It was really convenient this way. I pulled my back out a week or so ago and then re-pulled it the day before, so I was not looking forward to taking this trip solo but I tried to pack really light and brought this for Anna to sleep in instead of the pack n play:

It's a Kidco pea pod tent- a gift from my parents a while back. It has a little inflatable mattress that goes inside, and it folds up to become the lightest thing you will ever see. Anna slept 12 straight hours without a peep. Nice.


Good choice because I ended up lugging our bags around and didn't mess my back up from it. The timing of the arrival was great as Anna went to bed fairly soon after we arrived. I stayed up and watched The Voice thanks to the pleasant surprise of cable in the room. I had some major trouble sleeping- not as bad as the night before the first surgery where I didn't sleep a wink, but it took a while to fall asleep. I kept kicking myself for telling my mom several months ago that she didn't need to come down. Despite being 8+ hours away and having a bit of an aversion towards hospitals following my father's coma and death, she was ready to be there at 6:30am to give emotional support, and I was feeling like I desperately needed it at that point. But I tried to view it as an opportunity to be a full fledged grown up. I think I stood up to the plate well- we only had two minor catastrophes the two days :)


Anna went under anesthesia at 8am and came out at 8:45am. She was not happy, but it was easier this time because she wasn't on any pain meds. I ended up in the same room as this really great woman from Florida and we talked pretty much the whole time. I was very thankful for the company. She flies in from Tampa every 8 weeks for her 3-year-old daughter to undergo surgery and receive a new full torso cast for her infantile scoliosis. My heart really went out to her for everything she has to go through- I think she said this was her eleventh surgery! I can't imagine. I was so thankful that Anna only needed her cast on for 6 weeks. The hospital was wonderful and all the staff were top-notch. Anna received a special toy and a new outfit for her Build-a-Bear, per tradition. I thought I wanted to go locally for her first prosthetic but now I'm not so sure. Side note: why didn't I ever think to go into prosthetics? It would have been such a great career field. My mind goes back to all those people in India who couldn't walk because they didn't have a prosthesis. Can I go back in time please?


Anna is doing great. Only one more day with the bandage and then she can go in the pool and bathtub. Two weeks wearing a compression sock and then we go back to have her leg checked and see if she is ready to be casted for her prosthesis. She is already putting weight on her left leg. I was pleasantly surprised to see that it isn't much shorter than her right, so she can still stand and cruise around. She still drags her leg along as if she had her cast on, which is pretty funny.

Anna dropped two diaper sizes (stress? burning off tons of calories?) and she is a skinny-mini. It's so strange to hold her without the cast! We are already thoroughly enjoying the lack of cast complications.
We are relishing in the following:

12 hours of sleep that is uninterrupted from bursts of crying and wet casts.
The ability for her to sit up- we don't have to hold her up for everything.
No more hijacking my blow dryer back and forth from drying Anna in her nursery to drying my hair in the bathroom.
She can fit comfortably again in her carseat and highchair.
Going back to our cloth diapers.
She can wear ANYTHING now! Yay!
She no longer smells like urine from the cast lining.
She can take a bath and get in the pool. Hooray!
I can take her outside when it's hot because we don't have to worry about her getting a rash.
I can feed her all the messy foods she hasn't been able to have- including her favorite, spaghetti.

The last six weeks have been some of the hardest of my life. I am going to go ahead and say they were the hardest. But it just makes the joy of the present that much more. Hooray!

Looking Good

Anna's fingers look a million times better than they did a week ago. We are happy with the transformation once the swelling went down. Apart from the scar, you wouldn't notice anything different about the middle finger. The ring finger is fatter, longer, and the tip hooks to the right, but it was that way to begin with, so overall it looks pretty darn good.

Finger Freedom

Anna's arm cast is finally off! She still has to wear a dressing on it for 10 days until it is completely healed, but it's sooo nice to not have to get whacked in the face every time I hold her.

The day before her arm cast removal, I took a few videos of Anna getting around with her casts. I want to remember how far she has come and how much she had adapted by the end of the four weeks. Here's a short video of her standing, cruising, and climbing down. She became adept at getting up and down with both casts within the last week or so.



Ben took this trip to Greenville solo. For many reasons, including the opportunity to relieve some of the travel burden by travelling with Shr*ners transportation, we needed to split up the next two trips. I knew I would have to go solo for the overnight stay when Anna goes under anesthesia to have her leg cast removed, so Ben took her on this trip to give me a break. The trips are exhausting and emotionally draining. It's hard to see Anna going through the processes each trip involves. We both felt like we only had enough emotional stamina to take the reins for one trip.

He said it was a good thing I wasn't there. Anna was scared when they took off the cast, but became pretty traumatized when she saw her fingers for the first time. I'm not sure if she was scared because of the scabs and stitches, because they were unrecognizable, or what. She pretty much lost it and was inconsolable for a full hour, crying each time she looked at her hand. Finally the nurse thought to go ahead and dress up the fingers. Once they were covered she was able to calm down. When Ben relayed this story to me, I burst into tears. I didn't think Anna would be so self-aware. I thought she would be thrilled to have the use of her hand back. Obviously, she was very disturbed by what she saw. This has made me think a little bit more about her leg cast removal. I thought she wouldn't even remember what it was like before, that she wouldn't think anything of it. But now I realize that it might be quite traumatic for her to see her footless leg for the first time.

During the surgery they separated the fused skin between her fingers and then used skin and tissue from her amputated foot to graft on to the side of the finger that needed it. In terms of appearance, the fingers will look better and better with time. From far away, they look pretty good.

Anna looking at her fingers while we change the dressing.

It was hard to get a close up of her hand because she kept moving around. This was the best I could do.

Thank you to everyone who commented on my last post- you all gave some great ideas. I'll give an update on at some point.

Pretty Awesome

Anna managed this all by herself today:

She actually figured out how to pull up with only one hand and one leg. Pretty awesome. She even "cruised" from one piece of furniture to another, balancing on her leg cast and using her arm cast to bear weight on yet only holding on with her left hand. I can't believe she did that. It makes me a little nervous because she isn't strong enough to hold herself up with one arm for very long, and sometimes she goes face first into a toy.

Sadly, she got her first black eye today. Good timing, too- the day before her birthday party! Ah. I wonder what strangers will think when they see a baby with two casts and a black eye. Yikes. It's a horrifying thought yet I have to see the humor in it :)

Two Weeks Post Surgery

It's been two weeks since Anna had her surgery. It feels like an eternity as it's been one of the hardest weeks to date. Warning: this is not a warm and fuzzy post. Read at your own risk.

She wasn't showing much improvement- actually she was having multiple daily meltdowns yet was still on the same dosage of around the clock meds. We concluded that the medicine side effects were likely a big culprit so we tried weaning off her some off the narcotics. That helped some, until the rash took over.

We have been battling a nasty rash that flared up all around Anna's cast. It spread to everywhere the cast borders her diaper area and then disappears into the abyss of her cast. Sensitive skin + hot days + enormous cast (see picture below, before the rash) = really stubborn skin breakout. We're doing the best we can to contain it, which involves blow drying each area after a diaper change, letting her crawl around on the kitchen floor with no diaper for a little while, then applying medication and stuffing multiple layers in her (two diapers and some batting), plus keeping her indoors out of the heat. So yeah, it's pretty much a part-time job working on this rash. They told us if it doesn't improve, we will have to head back to the hospital to have her cast removed and another put back on. Since we only imagine trauma ensuing from pinning Anna down for yet another long procedure, we are putting all our effort into getting this thing to go away.

That said, she has been up crying all night for the last few nights. Of course we aren't able to pinpoint exactly what is upsetting her since there are multiple things going on. If you've ever had to listen to your child suffer like this, you know how awful it is. I believe it was 3am last night that Ben and I were sitting on the closet floor with our head in our hands.

Because I know you are dying to join in the fun, I've created a new game. It's called:

                                                                      Guess What's Bothering Anna?

It's easy. You just spin the wheel, and you have as much a chance of getting it right as we do!

There have been some happy moments despite it all:

 

Despite the frustrations, a lot of things about our situation are keeping it from being even more stressful. Here are some blessings I'm thankful for:

• By far the biggest one: Ben is on his most laid back rotation (research) which means he can be home half-time (even if he has to be doing work for much of it).
• She only had to have one of her legs amputated (many people have them both done).
• Her constipation appears to be resolving (check that off the list!)
• Amazing friends to visit with and help take my mind off going crazy. The ability to get out from time to time since Ben can stay home with the Bean.
• That I am a stay at home mom. I can't imagine working and dealing with this at the same time!
• Warm weather which makes Anna easier to dress.
• Five sweet, sweet care packages that have been much fun to receive (the pre-surgery one from Sarah, one from my church small group, one from Anna's Mother's Day Out teachers, one from my parents-in-law, and one from my sister in Boston) plus lots of emails and notes with loving words.
• Five meals thanks to sweet friends.
• Anna is at least eating some.
• A birthday party on Saturday.
• My two friends, Katie and Sara, who have gone through the same surgery with their little ones. Talking to them keeps me sane, as well.
• The Hunger Games is out this weekend!

The First Week

The first week is wrapping up and while I can't say it's a whole lot easier, there have been some happy moments. Anna learning to get around despite her cast, enjoying the good weather and her brief good moods, and spending time with Ben. She is still uncomfortable and not ready to decrease the pain meds yet (which we learned the hard way) so she is still taking them around the clock. She's not eating or drinking much and is generally cranky, but I would be too if I just lost a limb! Some cute pictures and a video from today:

The Big Day

Anna's feeling a lot better and she's been taking some good naps, so I have a little time to write about the last few days. I generally write in fragments because that is how I think, and we all know I'm not the best writer (even less so when I'm tired) so I apologize if this is hard to read!

I didn't take any pictures the day of surgery and only a few the next day, but I did want to take some to remember the event. Because while not the happiest of days, it will remain a big day in our lives and in Anna's. 

Here are a few pictures of Anna before the surgery, on our way to the hospital and in the lobby. Happy girl as usual. Crawling and climbing everywhere.

We had pre-op Monday morning and that's when we heard the bad news about the casting. We thought about calling off the hand surgery, but decided to keep going with it. It has definitley added significant challenge to Anna's mobility and ability to entertain herself, but it is what it is.

The next day we were at the hospital bright and early. Anna charmed everyone as usual.  It was hard when the nurse took her back. I looked away and choked down a sob, but I didn't lose it. All the nurses and doctors around made it easier to remain collected. I knew she was in good hands.

They gave us a Build-a-Bear ticket which was right there at the hospital, and that was a fun way to spend some time. I listened to a lot of worship music, too.

We received updates every hour or so. They first told us she went down without a whimper, which was a huge relief. Anna is a fighter and I pictured her clawing her way through the gas portion, but that wasn't the case. The surgery went as planned and took about three and a half hours. We weren't able to be with Anna until an hour after surgery when she was moved into recovery.

The first six hours were not that bad. Anna was groggy and fussy but didn't seem to be in any terrible pain. She couldn't really move and the waist cast keeps her from sitting up so we walked with her as much as possible in our arms or in the Medi-wagon.

It's very difficult to go through surgery with a non-verbal child. They can't tell you whether they are in pain, hungry, thirsty, tired, or uncomfortable. We had to guess by trying everything. When she would be extra fussy we offered her food, water, a nap, comfort, pain meds, etc. It's exhausting. Really hard. She was consolable for only short times the first 24 hours. She barely slept but a few hours at night. It was hard for her to be in that hospital bed with nurses coming in every hour to pock and prod her, despite how wonderful all the staff were. Anna hated it. She was connected to so many machines and hates any sort of restriction with a passion!

We also had some problems getting the pain meds working and that was the most difficult thing to go through, more than the surgery itself. We hated seeing her in so much pain. The second day when she was still in significant pain they agreed to try a new medication and thankfully it helped her sleep. After that she was a new baby. We saw her smile for the first time that day. It was brief, but wonderful. We hadn't seen her smile since the surgery, and I felt like we had broken her spirit. She had been so sullen and downtrodden.... when visitors or other patients would talk to her or smile at her she would cry. She didn't want anyone to come near her. She is still acting very distrustful of anyone other than Ben and I. I think she is afraid they are going to poke her, make her take medicine, or take her away. This breaks my heart. She used to be so happy to see anyone and everyone. I pray that she becomes trustful and happy again.

Here are some pics after she got some sleep.

The first picture of her looking more normal. She was playing with her bandaid and had a content expression:

She can lay on her tummy but can't move anywhere yet. She's not able to move at the left hip.

Once she got some sleep and wasn't in pain, they gave us the okay to go home.

She's on a rotation of meds around the clock and has been sleeping and eating better now that she's home. She gets frustrated that she can't do the things she used to do, and that is heartbreaking. But we'll get through these next six weeks. I'm so thankful Ben has this week off, though he was told he has to make up the hours next week (really? have a heart now...).  Changing her diaper is hard, and so is finding clothes to go around her arm cast. I cut one dress down the seam to get over her arm, and some of the sleeveless dresses she can easily wear if the weather warms up. Dresses will be our best friend this month.

Mostly I just try to keep my mind focused on today, not tomorrow or four weeks from now. God's grace is sufficient for us right now, and that's all that we need.
 

His mercies are new every morning.

Not too thrilled

But she's sleeping now...

Ready or Not

Sitting here in the Hampton Inn downtown Greenville. Had our pre-op appointment today, surgery scheduled for 6am tomorrow. Found out some not-so-great news. Anna is scheduled to have an osteotomy, which cuts and straightens the tibia, in addition to her amputation and finger separation. This complicates the recovery time and adds significant pain. We also found out that she is supposed to have a full leg/waist cast which will not allow her to even sit up for six weeks, plus a FULL ARM CAST for six weeks. This really caught us off guard, and we were not prepared for the news.

We debated calling off the finger surgery and having it scheduled for another time. It's hard to imagine our crawling, cruising baby in two full limb casts for six weeks. But before making a hasty decision, we prayed and Ben heard Hebrews 12: "Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith." Things that stood out to us were the race marked out for us,  as in continue the path we're on, and perseverence.  But most importantly...

Fix your eyes on Jesus.

Yes.

It's all about that, isn't it?

Here we go, ready or not.