Tomorrow! Tomorrow! I love ya, Tomorrow!

On this, the last full day of Cecilia being in the cast, I decided to document some things I haven't yet. This week I've been trying to better document this period of our lives. I know someday Cecilia will be interested to learn about what she went through.

I noticed I have a ton of closeup pictures of her in her spica chair, but not many where you can see the whole chair. So we put her on the wood floor and let her rock out while eating dinner.



The chair was the first saving grace in this whole thing, the second has been walks in the stroller. Cecilia loves birds, the duck pond is her favorite thing at the zoo. A few weeks ago I took her to Sugarhouse park because they also have a pond of ducks, geese, seagulls and other birds. The first time I took her, she jumped up and down in her cast and squealed the whole time. So yesterday we had to get a video, not as good as the first time we went there, but you get the idea.



Now to two home pictures. She loves to look out the window and only recently would she stand on the couch. Here I got a great full body shot. I can't wait to put her up there when she can really stand and see how tall she is!


Lastly, how she sleeps. We tried putting her in the crib and prop up her legs with pillows. But the urine would just run up the back and get the cast wet. Plus she loved this beanbag. She just snuggles right into it. So we bailed on the crib and put her in this to sleep. As I was putting her into it tonight I realized that after tomorrow's nap, she will never sleep in it again. It was a little scary because she loves it and I'm nervous she won't nap in her crib.


That is about it for our lives for the last three months. Tomorrow we start a new era. I'm more nervous about it than I thought I would be to tell you the truth. Cecilia hates change and this one is going to be a big one for her. We have to relearn how to do a few things (like pick her up), and I don't know how long it will take for life to get back to normal. Don't get me wrong, I'm still really excited, but just nervous too.

7 days, 2 hours, 40 minutes and 40 seconds

Ok so I don't know the exact second the cast will come off, and the doctor will probably be running late so it might be closer to 3 hours, but the fact remains... 7 DAYS LEFT!!!!

When people ask me "How much longer does she have?" I can officially say, "Monday" (and proceed to jump around and grin from ear to ear). No more of this __ week stuff, we are down to days.

Cecilia is excited too, see

Cast Change

Today Cecilia got a new cast. They had to put her under anesthesia again so they could cut it off and check out her hip and recast her. Essentially the only reason they do this is because she grows so fast that she outgrows the cast in 6 weeks. Everything went really well. The doctor checked her hip and said it looked really good. It doesn't move out of the socket now and just needs more time for everything to grow and solidify. Shaun and I were really happy to hear that. Hopefully that means this is the only time we will have to do this.

The cast is very similar except we have about another inch of her body. She still has the cast to the ankles and a bar in between. We expected as much so weren't disappointed when we saw her. In fact I feel we were prepared for today and knew what to expect on several things, her cast size and shape, how to handle her, the fact that she would wake up from anesthesia angry and how to deal with it, and we knew that the surgery would go well and everything would be fine. I didn't even cry this time, which is pretty amazing given the wreck I was last time. Cecilia also didn't cry nearly as long this time and played when we got home. She also took a 4 hour nap and went to bed on time. I'm hopeful that her sleeping won't be disturbed too much this time and she will adjust quickly. A lot of people in the HipBaby group say cast changes are hard. We'll see...

On another note, Cecilia initiated her cast this afternoon with a blowout of the century (as Shaun says). Apparently anesthesia gives babies diarrhea. When Shaun got her up from her 4 hour nap there was poop everywhere. And when I say everywhere I mean everywhere inside a cast poop can get, it was there. Then to add insult to injury Cecilia peed while Shaun was cleaning it up. Poop and pee all over our bed. The new cast didn't even make it 6 hours. UGH! Seriously though she hasn't had that much poop and runny poop at that, well, ever I think. Here is a picture after the first round of cleanup.

and
Yes, it takes up a whole grocery bag! This child smells worse today than she did after 6 weeks of the last cast!!! Tomorrow we will do round 2 of the cleanup and try to reach places we couldn't reach before. But 2 hours of wiping the cotton liner was enough for today.

Here is Shaun and Cecilia waiting to be taken back to the surgery room.

and the last picture of the old cast.

Halfway Done

6 weeks from today Cecilia gets her cast off. I've been looking forward to today for 6 weeks. I expected myself to be so happy that we are halfway done and look forward to the next six weeks going fast. But surprisingly this milestone is just depressing me. It feels like we should be done and instead of getting a new cast this week we should be getting it taken off. I feel like it has been a long time and don't want to go through another one as long. Shaun says I'll feel better after we get the new cast and have more days behind us than in front of us. I hope that is true. So to try to convince myself of this I decided to write about the good things about this cast. It will be a short list and I can think of bad things for each of these, but that's beside the point. Here goes,

1. We have been able to enjoy Cecilia's learning to feed herself more than if she were also learning to be mobile. Who knows maybe because she isn't mobile she is developing faster on this front? I love to give her a "treat" and watch her pick it up, open her mouth, and put her hand in her mouth. Most of the time now she gets it in there and chews it. I can see improvement everyday. She gets better at picking them up, getting it in her mouth and opening her fingers so it goes in the mouth instead of on the lip or falling on the ledge (her cast). Shaun and I have both really enjoyed watching the progress.

2. I have been able to hold her more than I would if she were mobile. I love my daughter but she is not a cuddler so every chance I get to hold her and rub her back is time I probably wouldn't get if she were mobile. I have to enjoy it now and remember it when she is running around.

3. Being able to go to church and sit in the lessons. We have a lot of babies in our ward about Cecilia's age and they have formed what I call "The Baby Brigade." Their children are just learning to move and the last thing they want to do is sit for three hours. These women miss Gospel Doctrine and part of Relief Society (the last two hours of church) because their children don't want to sit and play on a bench any longer. They all sit in thr foyer and let their children crawl or walk around. Cecilia is kinda noisy, but because she can't crawl on the floor I take her to class anyway. I want to actually get something out of this thing I'm making her skip a nap for(well to be honest, she usually skips the nap on her own so we take her to church). She loves to sit backwards and flirt with everyone behind us. she will do what she can to get their attention and then smile her big cheesy grin and coo at them. Melts their heart (and ours), they stare at her for the rest of the class and always come up to us after and say how cute she is. Shaun and I were discussing how we think she knows how cute she is and that everyone dotes on her so she exploits it to the fullest of her ability. You should watch her in action. Shaun and I are in trouble when she gets older!

4. I will appreciate her mobility so much more in the end. I look around my house and see all the things I need to baby proof and the floors that I will need to sweep daily. I'm kinda glad I can put off doing it for another 2 months or so. But when she starts moving around I know I will be so happy for it that I won't mind keeping my house clean. I will appreciate every day that she runs around and never wish for her to be back in this cast.

5. I will always have a special place in my heart for my "hip baby". Several women in the HipBaby web group, one in particular that I corrispond with, say they have a special bond with their DDH child. There is just something about going through a rough time and feeling so sorry for your child that binds you in a different way. I'm sure this will be the case for me as well. This dear, sweet, little child is so special.

There... I feel better about another 6 weeks already. I'm sure Shaun is right, once we have moved on to the second phase I will be excited we are on the downhill.

Here is Cecilia in her spica chair (the one thing that makes this doable) with the chain countdown I made behind her. It is really fun to see the chain get smaller everyday. Only 6 colors left! (this was taken a little over a week ago)

Almost three weeks in

Let me just say THIS SUCKS! Ok now that I got that off my chest...
Last week was probably one of the hardest of my life. It was so long that I can't remember the first week Cecilia was in the cast to compare. But she didn't sleep anymore than the first week and it was harder on me because:
1. Everyone says the first two weeks are the hardest. I kept wondering if that meant this is what the rest of the time was going to be like. Up in the middle of the night with a child who cries unless you are holding her and not sleeping for hours and skipping naps on top of it.
2. I was sick. Let's just say I couldn't decide if throwing up would make me feel better or not. I didn't, which given my history is a bit of a surprise. But I spent a lot of time in the bathroom and probably couldn't sleep even if Cecilia was and I certainly wasn't any help to Shaun with her.

It was the worst Christmas ever! No sugar coating this one. She was up for about 5 hours in the middle of the night, a record for her. And I was in and out of the bathroom the whole time. We were at my parents house and they were generous enough to try their hand with her around 4:30 am and to watch her after she got up again at 7 am (after not quite two hours of sleep) while we slept in. They are so sweet and patient with her, I have a lot to learn from them. Anyway let's hope next Christmas will be better. I would say it can't get worse, but I know I would be proven wrong :)

On to the lesson I learned this week. I went to church on Sunday (because she chose to skip a nap). While there I heard several other kids fussing or crying and thought to myself this could be worse. We have a sweet baby who only cries in the middle of the night when she can't sleep and we put her down. Amazingly she hasn't been much more fussy with all of this missed sleep. I'm sure Heavenly Father has his hand in our lives right now on this front. She is still a sweet happy girl and smiles or giggles when she sees us. We are so blessed to have her in our lives and need to remember this is difficult for her too.

One last thing and I'll finish. Cecilia gets punchy when she doesn't sleep. It is kinda funny, except it reminds me she is overtired. Since she got her cast she has started to grin a huge, toothless, cheesy grin. Well last week she started giggling. She has always been a smiler, but getting her to giggle has been a challenge. Until sleep deprivation! Every time Shaun or I walked into the room from being out of sight she would smile huge and start giggling. It was hilarious! We started a game where I would walk away and then come at her and she would just laugh and laugh. It was the silver lining of the week. I was able to get a video, although this doesn't quite do it justice, I guess you just have to experience it for yourself. Anyone is welcome at 2 am to witness it :)

Moving Backwards

This whole experience with Cecilia in a cast has really thrown Shaun and I backwards. We feel like Cecilia is a newborn again. We have to relearn how to hold her, how to diaper her, how to bathe her (sponge), how to dress her and what will fit (nothing really). I have to figure out how to nurse her again. We are back to middle of the night soothing and feeding several times and sleeplessness. Shaun said this morning he can't remember having a worse night with her, not since she was born. It brings back memories of those first few nights when I was up every two hours and had so much adrenaline that I couldn't sleep between feedings anyway. The list of similarities goes on, she can't do the things she used to like sit up on her own, play on the floor by herself, roll over (which she has tried to do several times while I'm changing her diaper and it breaks my heart to see because she just figured it out), kick me when I'm changing her diaper and most precious of all stand up. She cries for no apparent reason and we wonder if life will ever get back to normal or if this is life for three months and we will have to do some major retraining in the end. It is the most surreal experience. One I wish I wasn't having. But reminiscing about her being a newborn is the silver lining. Plus we feel more confident as a parent this time and it is taking us less time to figure it out. I think life will be much better once we are all sleeping better, hopefully.

Day... I don't know I'm so tired I hardly know my name

Today is Friday. That much I remember. So if Cecilia got her cast on on Tuesday this must be day 4. Yeah ok, brain a little slow but it is still there. I remember today is Friday because we took Cecilia back to Primary's to get a CT scan of her hip to make sure it is in the right place. That went well. Everything looks good and we were able to convince the doctor to cut off some of the top of her cast. It came up so high that it dug into her armpits and she could lick the front of it when she sat. He agreed that it was too high and thankfully cut off about an inch and a half (like Shaun said in his post). I joked with the doctor that he does this to all the parents so they feel better about the cast they have in the end. It was very traumatizing for Cecilia, but worth it to get another inch of her cute body.

So on to the reason my brain is so fried. I think Cecilia must have had some muscle spasms last night because she woke up several times crying between 10:30 and 2. We kept going in and rocking her to sleep, then put her down and 10-20 minutes later screaming again. Finally at 2 am I gave her some more Motrin (after Tylenol at 10:30) and rocked her to sleep and and stayed there holding her for about an hour. She would occasionally jump and start crying, which is what many say the signs of muscle spasms are. Poor thing! Finally I think the combination of pure exhaustion and the medicine worked and she slept until 6:30. Shaun and I are running on fumes after three nights in a row of little sleep. But we are tapping into our reserves and hope tonight will be better.

Minor victory

Today Cecilia got her cast off! Well, about an inch and a half of it
anyway. The surgeon agreed with us that it was way too high on her
body so he let the nurse cut off a bit of it. Too bad they could hear
the little one scream from two miles away.

Surgery Day

Well our journey has begun. Cecilia is now in a full body cast. It is much larger than I expected and we all hate it. It also has a bar across the legs which the doctor and nurses say makes it easier to pick her up. Which may be true but dressing her is more difficult and we can't get as close to her.

Anyway her surgery was on Tuesday and it was honestly one of the hardest days of my life. I don't know a mom out there that won't cry uncontrollably when her perfect little baby is taken from her to go into surgery (and continues to cry every time she thinks about it). But thankfully they were able to do the closed reduction and just cut a tendon to loosen the leg to get the perfect fit. The doctor said it sat really well and there was no question as to the open reduction. This is good because the recovery time is a lot less and we were able to bring her home same day. She cried that day more than I think she ever has in her entire life combined. She was mad, and I'm sure in pain, when she woke up. Thankfully they called me back quickly and I was able to nurse her, which calmed her considerably. It was so hard to see her screaming at the top of her lungs and in this HUGE cast and with dilated eyes from the anesthesia. Of course I cried too. Had a hard time stopping since too. But everyone who has gone through this says the first 2 weeks are the hardest. We just have to make it through these two weeks and everything will get better. I just can't help feeling so sorry for my little girl who keeps trying to pull the cast away from her and whom I can't cuddle and comfort. I can't help wishing we found this sooner so we could do the harness which would be so much easier to deal with. I can't keep from crying when I give her a sponge bath on her head and feet remembering when she loved to take baths.

But I'm also grateful that we found it before she was mobile because I know it would be so much harder on her if she knew how to move and couldn't. I'm grateful for her spica chair which will allow her to sit up and play and where we can feed her. I'm grateful for the online group where I can hear others stories and be grateful she will only have this for 3 months and hopefully never again. I'm also so very grateful that Cecilia is an otherwise normal, perfect baby.

At the hospital we had to wait with other families whose children were having surgery. How grateful I am that Cecilia doesn't have a feeding tube and tracheotomy and who is going through her 4th surgery and she is only a year old. How grateful I am that I'm not the mother of the teenager who has a severely scarred face. Or the mother of the 6 year old so skinny that I can carry her in my arms. How grateful I am that Cecilia has a curable condition and after these next 3 months we can look back and never have to worry again.

So day two and we are sad and grateful.

DDH

Cecilia has been diagnosed with a condition called Developmental Dysplasia of the Hip or DDH. Essentially what it means is she was so squished in the womb that the ball of her left femur couldn't fit into the right place in her hip when it was forming and so is not in the right place now. We need to get them together and keep them there so they will stay and grow around each other properly. If we had caught this before she was 6 months old they would have just put her into a harness for up to 3 months and her hip would have grown over the ball. But now that she is older she is too strong for the harness and there is a possibility that tissue has grown between the socket and the ball. This means she will have to have a surgery. They put her under anesthesia and try to place the ball in the socket. They then inject a dye and take an X-ray to see if it "sits" well. If it does then they put a cast on her and they are done. If it doesn't they snip a tendon that can cause the area to be tight and see if they can get a good fit. If still not then they give her an epidural and make an incision and clean out the fatty tissue that is in the way. The first two possibilities are called a closed reduction and the third, more invasive, is called an open reduction. Either way she will have to be in a cast from her belly to her ankles for three months with a cast change at 6 weeks (because she will grow out of the cast).
Shaun and I are obviously upset by this news. A million thoughts go through my head at the same time, so many that I can't express them here. This is a fairly common condition (1 in 1000 births) so there is a lot of information online and a support group for "Hip baby" moms. These resources have been so helpful for us as we come to grips with life over the next three months. The symptoms are pretty clear and the treatment is very standard. Both of these facts comfort us that Cecilia has been correctly diagnosed and will be treated properly. I feel the Spirit has confirmed this to us and put our minds at rest that this is the best for our daughter. Additionally through the support group I can talk with other moms and get advice from them on how to diaper, clothe, clean, feed and entertain Cecilia while she is in a cast.
I'm most concerned with two things. First, sleeping. Many moms say this is the hardest part because it is difficult to keep them comfortable (understandably so). Additionally as you know Cecilia is in love with her swing, which she will not fit into with a cast on. I have renewed and doubled my efforts on that front and we are finally making significant progress. Thank Heavens! But we won't know the position of her legs in the cast until the surgery. They may be straight out, or bent up like an M shape or anywhere in between. This makes it hard to prepare for sleeping positions . We just pray the Lord will help us when the time comes. My second major concern is the number of blowouts Cecilia has on a regular basis. She poops up a storm during her morning nap and frequently the diaper can't hold it all. Regular blowouts in a cast is going to be a nightmare. It isn't like I can take out the cotton lining and wash it. I have done a lot of research on this and hope I found some good pointers for keeping the cast clean. Let's just say feminine products and Depends are used as well as double diapers. I think Heavenly Father is helping me out here too because since we started to feed her more cereal her poop has gotten thicker and says in the diaper better.

Entertainment is going to be tricky, as will taking her anywhere. The vain side me thinks about how many comments we get about how cute she is and knows these will turn into "what happened to her?" But like I said, that is the vain side of me and probably needs to be humbled anyway. Besides she will still be adorable. We bought a chair specifically designed for spica kids (that is the name of the type of cast) and hope she likes it. At least she can sit up and play in it. I recently posted about how she loves to walk now. That will be impossible and will probably frustrate her. We probably never should have done it with her. We'll try to underemphasis it now. Cecilia loves walks outside so we will just have to figure out a way to bundle her up and take lots of walks. Maybe I'll get in shape :)

Everyday we think of another aspect that will change or be more difficult. But we just remember this is what is best for our daughter and 3 months isn't that long. The long term outlook is really good if we get it taken care of. She shouldn't have any problems as she grows up and her hip should grow to be normal. Both of those facts are very encouraging and will sustain us during the hard days. I'm just so grateful we found it now before she is really walking or crawling as it would be much harder. This is the main reason we decided to move forward ASAP. So her surgery will be December 8th at Primary Children's Hospital here in SLC. If she just needs the closed surgery we can take her home same day, if they have to do the open she will come home next day. Please let us know if you know someone who has gone through this as I love to get as much advice as I can. And pray for Cecilia that the surgery will go well and she will adjust quickly to being in a cast.