6 Months!

Somebody stole our tiny baby and gave us this playful half year old.  I can't believe how fast time has gone by and I'd really like to slow it down.  She has changed so much in the last 6 months.  But so far, this has been my favorite age.  Her personality is really shining through.  She's going to be one of those "I do it" kids.  She wants to feed herself with a spoon; she kind of can but it makes a big mess.  She doesn't like me to hold anything for her, she'd rather hold it herself.  She has quite the temper, especially if she is hungry (9 hours of not eating before surgery was scary).  Travis would love to blame the temper on me, but if you've ever seen him play basketball or been at our house on a Sunday during football season, replace a few "wahs" with some other, not so nice, 4 letter words, and the blame evens out a little more. She laughs, but she really makes you work for it.  Peek-a-boo just isn't that funny I guess.  I've had a lot of fun making baby food for her.  Peas are the only thing I've found that she doesn't care for, but if I disguise them by mixing them with sweet potato she eats them. We've gotten some great use out of our zoo pass.  A couple of weeks ago we went with Kevin and the twins; everyone thought Kevin and I had triplets and it was pretty entertaining.   

Favorites:

Toy- sofia the giraffe.  I can't believe we survived 6 months without her.

Food- carrots, pears, and sweet potato 

Song- ABC's especially when I make the sounds instead of say the letter

Family member- Josie

Baby Item: Munchkin fresh food mesh feeder, it has been great for teething relief (still no teeth but I can feel some little bumps coming) and trying new foods.  They can be super messy but she has lots of fun. 

Talents: Who needs rolling and crawling when you can give high fives?

Pre surgery she was a professional roller and getting pretty great at sitting too.  She is definitely annoyed that she can't do those things anymore, but we are sure that she will replace those skills with other ones and once that cast comes off, she will catch up quickly.  

High five- we've already proven some skeptics (aka my dad) wrong!  

Drinks water out of a straw sippy cup

Spica cast scoot- it only took her 2 nights to figure out how to turn herself around in her crib

Spica cast and hips

Well we have 1 hip in and 1 to go.  The worst part is, we have to do this again.  Tuesday/Wednesday was probably one of the hardest couple of days we've ever experienced.  But seeing all of the other kids at Doernbecher was a great reminder that if this is the worst for us, we are very fortunate.  Tuesday was the hardest.  Since they were over 3 hours late starting surgery, because the case before us had some issues, Rilynn went a total of 13 hours without anything to eat or drink.  If you've ever seen our child hungry, you'd understand why we were just waiting for the biggest melt down, but she was surprisingly pretty good, especially since Travis did such a great job of entertaining her.  We got through the night at the hospital changing her diaper A LOT and the nurse giving her pain meds through out the night.  A baby on morphine is no fun; she wasn't herself at all.  Even with all of the diaper changes, being on IV fluid made her pee through the sheets twice in the night.  Wednesday things started getting better until OT/PT came with the car seat and we found out that because of Rilynn's special angle on her right leg she DIDN'T FIT!  So we are the first people at Doernbecher to use the Hope Car Bed.  But wait, there's more... an adult is supposed to ride in the back with her.  I almost died when they told us this and I think Travis was even more annoyed because in my adult years I've become quite the rule follower (shocking I know).  I'm hoping that in 2 weeks when we do the other hip and get a new cast, the new angles will allow for the Hippo car seat instead.  Until then, I'm hoping that the rebel in me comes out and I get the courage to go somewhere with her on my own, but getting somewhere is only half the battle.  The 3 of us are starting to adjust pretty well to things and figuring out what works.  Diaper changes, feeding, sitting, pretty much everything is different and a little more complicated, but doable.  Starting Friday morning, I stopped giving Rilynn her pain medication and she started acting like herself again.  I plan to post information on taking care of a baby in a spica to help others going through this.  We've gotten some amazing help from other blogs and parents on Facebook.  The nurses were amazed at how much more we knew than they did about Spica care at home.  Feel free to ask questions.  I think I'm out of tears and am happy to give anyone information about life with a spica cast baby.  If you know anyone going through this, please send them our way.  I've reached out to a few hip parents and it has been so helpful.  

"Look Mom! No hands!"

First 4th of July at Black Butte!  

Got to wear her 4th of July outfit without a cast.

Dad and Ri swimming at the Butte.

Family swim time!

She likes to sleep on her side or stomach.

See.

"Apparently riding the dog like a small pony is frowned upon in this establishment!"

Prunes! Always better all over your body.

Thanks Uncle Rob and Aunt Ruth for the most comfortable onsie ever!

Big girl in her stroller.

That hair!

Swimming is tiring. 

Sup gansta!

At the zoo with Mimmi!

New beanbag chair... if only she knew why we bought it. 

Loves eating fresh food out of her mesh bag.

Besties!

Date night with my number 1!

Who has surgery today?  This girl!

Waking up.

Not a happy camper. 

Our room for the night.  

Her car bed. 

This is why we bought the bean bag. 

New set up in the changing table; yes this is a blow dryer, part of our new diaper routine.  3 layers of protection. 

She can officially sit in her Keekaroo high chair now that she has an added few inches of neon pink padding. 

Big girls feed themselves.

Getting 2 bottom teeth (that haven't actually popped through the surface yet) is no fun. 

My favorite half year old.

No. More. Pictures!

Aunt Sadie!

Bonding with Josie.

Bumbos!  This is my favorite picture of Dom!

"Rilynn, why is your mom back here?" So embarrassing!

Loving her spoon and sippy cup.

Sofia is her favorite. 

With Uncle David.

The girls' favorite day.

Tyron Creek hiking.

Guess what hip dysplasia, I'm having fun despite you!

Open Reduction take 1: right hip

Longest. Day. Ever.  It wasn't quite as smooth as the closed was, but, it was successful and we have 1 hip already on the path to recovery.  Rilynn slept great last night. I woke her up at 5:30 to feed her and she snuggled with us until about 8:30.  We arrived at 10 for our 11:30 scheduled time.  At 2:45 she finally went back and they started around 3. For not eating for a total of 13 hours, she was a trooper. Everyone loved her and her hair of course. We got to see her around 5:30. She had a coddle which is pretty much a baby epideral and is on pain medication. If her pain is under control, we can go home tomorrow.  She hasn't smiled yet and is sleeping a lot, but the nurses are staying on top of her pain. The right hip, which was the most difficult hip during her closed, went in smoothly after they cut some tendons that were in the way. The surgeons felt that everything went great and put her in a pink cast with half of her left leg freed up until August 12 when we do the left hip.

Open reductions scheduled

Rilynn will have her first open reduction on her right hip on Tuesday, June 22 and her left hip will be on Tuesday, August 12. They will both  be at 11:30 am. We were a little disappointed with the dates because 3 weeks apart means an extra week in the spica and the second surgery wasn't the best timing for Travis's work schedule, but we are glad to have this scheduled. I was also hoping for a 7:30 start time, but we had to take what we could get to get it scheduled this soon. Again, this isn't guaranteed to work, but there's a better chance than the last one and our surgeon is doing everything he can to increase our chances including having his partner assist and doing them in 2 surgeries rather than 1. I have a better feeling going into this one than I did the last. We did find out a couple of reasons her hips did not stay in place. She has shallow sockets, which is probably because her hips were out for so long even while she was still in utero, and they did not have a joint to grow around. And she has super tight tendons and ligaments (probably gets that from me) that are pulling her femur head out.  During this next procedure Dr. Renwick and Dr. Turker will be going in from the front of the hip and can see what's going on to make any cuts to loosen up those tendons and remove any tissue in the way.  They will again place the hip into the socket and cast her. There is not any hardware used for this operation. Her hips are still developing into bone and are too soft to use anything.  Once her hips are in place, we will have regular check ups even after the cast to look to see if her sockets grow around the femur head. If not, around the age if 3 she will have additional operations to help those sockets hold her hips in place. We decided to do these open reductions earlier in hopes to prevent further surgeries in he future. We trust that our surgeons will continue to make decisions that are in Rilynn's best interest and that these upcoming surgeries will be complication free! Thanks again for all of your support!

Closed Reduction Failed

We are home, cast free for now.  It has been quite the day...

Last night:

I cried giving her a bath since I didn't think she'd have one for a few months.  It was 83 degrees in our AC free house so she slept in our room, where we have a window AC unit, in her old rock and play.  I prayed that either both hips would go in OR neither would go in, because if only 1 went in her over all time in the cast would be 5 months which, as I've said before, gives more opportunity for avascular necrosis which is when the hip bone dies and there is permanent damage.  Well, God must have gotten a little confused and thought I said both hips in AND both hips out.  

Today:

The alarm went off at 4:45 and we got ready to go for our 6 am arrival. They took us back and got Rilynn prepped. A family friend, who is the VP of finance for the foundation at Doernbecher, pulled some strings and had the chief of anesthesia as well as another orthopedic surgeon come by and check in with us which was helpful to put our minds at ease. When it was time to say good bye at the kissing corner, I fell apart.   I hated saying good bye knowing that when I saw her again everything would be different.  Rilynn was given a number so we could track her location while we were in the waiting room. We were told to expect at least an hour and a half and they would call after an hour, so that I would feel better knowing what was happening. Travis and I settled into the waiting room where we watched Toy Story with other waiting families. After about 40 minutes I noticed Ri's number had changed colors meaning they were about done. Soon after the surgeon came out to tell us the good news that he got both hips in, everything felt great and she had a pink cast. He ordered an MRI to double check but we could go back to wait with her as she woke up. She was fussy waking up and her voice was raspy from the air tube during the procedure. She wasn't too thrilled when she woke up and realized she couldn't move her legs and she was hungry.  She had some sugar water and baby Tylenol and then she nursed after a bit. We learned how to change her diaper and hold her.  She cried a lot, I cried a lot, and Travis comforted us both.  Our emotions were up and down, but we were excited and hopeful. Everyone said how great the procedure went.  When we went down to the MRI, I went in the room with her and we both wore ear plugs. They prepared me for a lot of crying because of the noise, but I held her hand and she slept through almost all of it and they were shocked (have I mentioned how awesome our kid is).  They checked with the radiologist when they were done and ended up needing more images. That's when worry started to come to the back of my mind that something might not be right. When we got back to our recovery "booth" area I started feeling more positive and we felt like the cast was do able. Our friend Dr. Nicoli (you're welcome Daniel) was able to come see us and that's when Dr. Renwick came back with the MRI results that both hips were back out. It was so disappointing. He immediately got going to remove the cast. He told us that the bilateral part is what makes things more tricky and more unusual.  After today, he has moved up on my scale of doctor quality. He was informative, quick, and empathetic which goes a long way with me. There's nothing more annoying to me than people who act like this isn't a big deal. We know how fortunate we are that she is otherwise healthy, but it doesn't make this less difficult.  Again, we were told she might cry taking off the cast because it takes a bit of time and the saw makes a lot of noise, but our little tough girl didn't mind a bit.  We finally got to go home and were all exhausted by the end of the day. When we got home the 3 of us took a long nap together and when Rilynn woke up she seemed back to normal self. It felt so good the snuggle with my family and know that the 3 of us are in this together.  She is doing amazing! Every time they told me she would cry today, she stayed strong and wowed everyone. 

So now what? Our new plan is to have two open reductions later this month.  Again, she will be put under and they will make incisions in her legs to clear out any tissue blocking the hips from going into the socket.  We will do the first hip later this month, put the cast on, and then do the second hip 2 weeks later.  She will be in the cast a total of 10 weeks.  Of course, I wish we were already on the path to recovery and that we would have been successful with the less invasive procedure today, however we do see some positives and trust that this was God's plan.  We are excited that instead of 12-18 weeks in a cast it will only be 10 weeks.  We are also so thankful that our doctor chose to get an MRI today, not 6 weeks from now, to check that her hips had stayed in place after the cast was put on and that they found out after only 4 hours in the cast that it failed.  This next procedure has a higher success rate, so that has helped put us at ease as well.  Now that we had our trail run today, we know what the expect.  Although we wish we didn't have 2 more surgeries (fingers crossed only 2) ahead of us, we will go in more prepared for what to expect.  Thank you for all of your prayers, thoughts, finger crossing, or voodoo dances.  Everyone's messages and phone calls mean so much to us.  We have such a wonderful family and group of friends.

Pictures from yesterday:

Oh, PS she is getting really good at sitting now!

Cute outfit from Grandma

Trying to escape her crib during her nap.

Pictures from today:

Waking up in recovery.

Dad by her side.

Her crib for the day.

First smile.

Add caption

The spica

4 hours later... good bye spica.  See, she just chilled while he was sawing away.