One Week Out (April 27, 2013)

Yesterday was one week after Lila's surgery, and she is doing so wonderful!!!  Her swelling seems to be almost completely gone - just some swelling between her eyes.  She still has bruising on her forehead and around her eyes, though most people would think her skin is just a little tanned.  She still gets worn out if she does too much, and the doctor said that will continue for another week or two.  Today we ventured out to pick up Nonnie and Scotty from his soccer game (she did some walking there) and then went over to catch the remainder of Benjamin's baseball game.  It was cold out and we were afraid she might get sick, so I took Lila to the van and we watched the game from there.  By the time we got home, she was too tired/sleepy to eat.  She had a snack in the car, and took a good nap once we got home.

The chain Lila made on Monday 4/22 to

count down to when the swelling would be gone.

 

Today, Saturday 4-27-13

Lila and Nonnie - Neither one cooperating with the photographer

Photography by Scotty

 

Yesterday a good friend brought dinner by - homemade Puerto Rican chicken and rice, complete with rolls and homemade triple chocolate chip cookies. She even used low sodium ingredients for Benjamin. I think there is barely enough left for a small bowl. We ate it up!!! Tom's mom had just gotten in and it was a great blessing (not to mention a delicious one)! Thank you, Julia Riveria!!! I don't even have a picture because I thought about it too late - it was practically all gone.

 

This is the hairstyle Lila has been sporting since surgery day.

The surgeon's nurse said we could put conditioner on her hair, so hopefully

the huge knots will be easier to brush out by the time we try (which won't

be for another 2 weeks or so).

 

 

Lila does not like her incision.  She really doesn't like her forehead.  If she knew the words, I know she would say the doctor messed up.  It's just not her forehead.  She had that dip/gap for 4 1/2 years, after all.  She noticed it by Friday night, even with the anesthesia.  Tom and I absolutely LOOOOVVVVVVEEEEEDDDDD her little head just the way it was. It was beautiful and perfect.  I miss it, too, in fact.  If it hadn't been a safety issue, we most likley would have let her decide when and if she would have surgery (which I'm sure she would have by her teen years).  At least the swelling around her eyes has gone away enough that she isn't upset when she looks in the mirror.  I don't think our four-year-old was thinking about beauty, but that she wasn't seeing HER eyes in the mirror before.  The bridge of her nose is still very tender, as is the incision.  Overall, she is doing so amazing that we all can't believe it.  Tom and I thought we would be taking turns this whole week, and maybe some of next week, staying in our bedroom with her while she slept and healed.  Weeelllll, that has NOT been the case.  She played the day she got home a little and more each day since! PTL for her active spirit and personality.  We knew that would help with her recovery. 

 



Home and Doing Great! (April 23, 2013)

Well, the rest of Friday and Saturday were long days sprinkled with okay times for Lila.  She has always been afraid of getting her temperature taken under her arm, and even got to the point where she was done with the little blood pressure cuff.  She slept pretty good Friday night, waking up a few times.  Saturday she felt okay in the morning, but was already saying she wanted to go home.  She missed Daddy, so Tom came up to the hospital early Saturday.  Benjamin missed his baseball game so Scotty could go to his soccer game.  Gagi (Patsy's mom) did great finding her way to the field and entertaining the boys.  The nurse in PICU had her up walking by late morning around the unit, then Lila took a ride in the wagon they had in the unit.

PICU Wagon Ride 4-20-13

Daddy Holding Lila Saturday Morning in PICU 4-20-13

Shortly after surgery (in PICU) 4-19-13

Sweet, sweet little girl 4-19-13

 

Even under anesthesia, Lila had her thumb

and pointer finger ready to suck. 4-19-13

 

After Lila was settled in PICU Friday, Tom spent some time with

Scotty and Benjamin (and Gagi) in the hospital getting lunch and

seeing some of the kids' play areas. 4-19-13

 

Saturday the boys came up so I could spend some time with them while Tom stayed with Lila.  Lila was moved to a regular room on the pediatric floor around 3 pm Saturday.  Unfortunately, they started taking her temp and blood pressure right when we got to the room and the boys were there as she screamed.  We could tell she was feeling achy and just not feeling great before the room change, so that just made things worse.  Tom took them out quickly and they explored the floor.  After getting some IV Tylenol, she settled down and slept for a really long nap.  Benjamin and Scotty got to see her sleeping peacefully before they went home. Tom stayed with us Saturday night and Lila slept really most of the night.  She started getting hungry Saturday night and ate 2 small cans of chicken noodle soup and lots of Sprite.

Sleeping in her new room on Peds floor. 4-20-13

Sunday morning they finally took the IV out of her foot.  It had really started hurting.  But she didn't move a lot and still wasn't talking much.  During the night, her eyes finally swole all the way shut, so that had to be part of the issue.  Of course, that wasn't her favorite thing but she took it in stride.  Aunt Lisa and Uncle Frank stopped by for a visit.  It was great to see them and very sweet of them to stop by.  Dr. Fearon came by while they were there and released her.  We asked if we could please wash her hair at home instead of at the hospital (as the orders showed).  She HATES getting water in her eyes/face and after all the poking and prodding, we just thought it would be less stressful for her at home.  He said that would be fine and so we started packing up.  As soon as Lila realized we were really going home, she perked up a lot.  Her awesome little personality started showing again and she started joking around.  Tom and I realized how sad she had been that morning about still being in the hospital.  In fact, on the way out she wanted to get down and pull her suitcase that she'd picked out for her hospital stay.  Her eyes had little slits for openings, so I held her hand, too.

Lila made this face all on her own when we got ready to leave.

I was so glad to see her silly side back, I joined in. 4-21-13

Glad to be going home! 4-21-13

Lila LOVES Mickey Mouse, so we were glad she was able to see this one in the

hallway on the way out. Her eyes opened a little bit right before we left. 4-21-13

She was even okay getting buckled into her car seat (which is normally NOT the case).  She ended up sleeping some at home, and then we gave her a bath.  I cradled her with her head over the tub while Tom washed her hair.  It was surreal how relaxed and peaceful she was.  We are SO glad we did that at home!!!! She then had a fun, fun bath time. Her eyes closed overnight Sunday but opened again during the day Monday.  She went around the block on a wagon ride with Gagi and Scotty and played at home some.  But today (Tuesday) she woke up with slits open in BOTH eyes!!!!  She definitely is feeling better each day.  Her nose has been really stopped up and still is, but that may not get better until the swelling goes down more.  She played more today and took a shorter nap.  She gets worn out, but is definitely back to her adorable self.  Her incision is sore, as the surgeons said it would be and as we would expect. She has asked a few times what her incision is.  We told her that is how the doctor was able to protect her head.  The incision was done so well that it's hard to locate, even though it goes over the top of her head and down to about 2 inches above each ear. She also does NOT like the way her eyes look right now.  We finally realized she thought they may stay that way, but Tom explained her eyes would get better each day and look the way they did before.  He had the great idea to make a link chain for the time it should take for her eyes to go back to normal, so every day she tears off a link.  I'm not sure she remembers why she has the link chain, but it helped her in the moment when she was sad about her eyes and it sure is fun every morning to rip a paper ring off!

Thank you for all the prayers for Lila, and Benjamin and Scotty, and me and Tom!  Her surgery was "perfect" according to Dr. Fearon (the craniofacial surgeon), and her recovery has been great.  We are SO glad she is doing so well and feeling more like herself again.  Gagi heads home in a couple of days and then Nonnie (Tom's mom) will be here for a week to help.  We don't go back to the surgeon until the first week in June for her follow-up visit. 

Riding in our wagon at home with some "Get Well" gifts 4/22/13



Playing with Gagi 4/23/13 (swelling down a little)

Lila is Out of Surgery

The craniofacial and neurosurgeons came up to talk to us about 11:25 a.m. The surgery went perfect according to the craniofacial surgeon, Dr. Fearon.  Lila was in her room shortly after that in PICU and they called us back just before noon.  I had heard a child crying and said something to Tom about that being a reason children aren't allowed in the PICU (both boys, any child, would have a hard time with that).  We both were sad just hearing it.  Unfortunately it turns out that was our sweet Lila.  I didn't even recognize her cry because her voice was lower due to the tubes used in surgery and surgery congestion (that's what I call it). She was really upset and hurting.  They gave her additional pain medicine two times and moved tubes so I could lay by her.  Our poor baby sat up at one point crying and because she wasn't really awake, she kind of fell back down to the bed before we could help soften her landing.  That really hurt because we found out they shaved the bone graft from the back of her little head.  The awesome nurse got a pillow and that really helped (along with the additional pain meds). 

She is sleeping peacefully now and hopefully will be for a while.  I'm sure it will be a long night.  Dr. Fearon put a small bone graft on the bridge of her nose to help with the hypertelorism since it is so slight.  So her nose, the back of her head, the top of her head (where the incision is), and her forehead are going to be sore.  Please be praying God will give her comfort and that all the medicine and sleep will help her hurt less - even not at all.  Please pray for Benjamin and Scotty because I know they are concerned for their sister.  Tom and Gagi (Patsy's mom) are entertaining them here at the hospital right now - getting them lunch and also going to the gift shop to pick something out for Lila.  But please pray they are able to keep busy with a normal routine and have peace about Lila's surgery.  We are SO very thankful for Gagi and Nonnie being able to come help with so much!!!!  Thank you to our families in Chicago and Missisippi for helping to make that possible!!!  Please also pray for Tom and I to have stamina for Lila and the boys.  Most of you know I can take viewing a lot of medical procedures and things like blood or injuries don't phase me.  But it's always different when it's your child, isn't it?

Surgery Update

Lila will not go to recovery, but straight to PICU to recover after surgery.  Tom just called and the nurse said things are going very smoothly, PTL! They think they will be done in about an hour!  We can't wait to see her. 

More Adventures from Pre-Op (April 19, 2013)

Playing a Bit Before the Next Appointment

Lila the Photographer

 

While we were waiting to go back at the Craniofacial Center, a super nice nurse came rushing out to make sure we saw the baby starfish in their fish tank. We're going to show the boys. They were really cool. This one is the

You can see this one better. Isn't that cool?! 

They are about the size of a pencil eraser.

 

Next, the photographer....and the most beautiful subject.

 Again, she did phenomenal. Anything they asked her to do, she did.

See the balloon glove she is holding that Daddy made for her when she started crying when the anthropologist tried to measure her eyes? The photographer's assistant held a sign up at the beginning of the photo session with her name on it right in front of her chest.  All of a sudden, Lila stuck only the balloon glove up above the top of the sign and started waving it like a hand back and forth and said "Heeeelllllllloooooooooo!"  It was so hilarious we all busted out laughing.  I wish so much we would have had a video going.  

  The photographer and his assistant could NOT believe how great she did and how adorable she is. They let her pick about 30 stickers, and even got out the secret special stash of Sponge Bob stickers (which unfortunately at 4 years old, Lila really likes).

A little more play time before our last appointment.

 

In the waiting room at Dr. Fearon's with her new Teddy Bear and "doctor's kit."

Lila wouldn't look at me for a picture, so Daddy asked her if she wanted to play with this.  He didn't even have anything in his hand, but it worked. She looked over right away and said "Huh?"

 

 No nap and 10 hours later, she is ready to go home

(and so are Daddy and Mommy!)

 

Lila Is In Surgery and Pre-Op Pictures (April 19, 2013)

Lila went to the OR about 7:45 this morning.  It was hard....Daddy cried.  She was surprisingly fine this morning and had a pleasant wait, except for the yucky happy medicine (versed).  After spending 11 hours here yesterday for pre-op appointments, we wondered if she would resist coming back again today. But in her usual happy way, she just went with the flow with a smile. 

On a lighter note, we want Benjamin to meet the pediatric neurosurgeon.  He has long hair in a ponytail and a super nice guy.  There are only 3 in our area, so it would be a great career choice and Benjamin already has the hair for it.

Here are some pictures from yesterday's whirlwind schedule or Pre-Op.  We got to the hospital at 6:15 a.m. and left at 5:15 p.m.

 Small Play Area with a Whale

The Princess and the Whale

 

Singing to Pass the Time

 

Lila's Photography

At the Genetisist with Her New Teddy Bear

(a wonderful group donates these to the children)

 

In the Rocket Chair at the Appointment

with the Anthropologist at the Craniofacial Center

Lila had a choice of her princess dress or a regular outfit if she wanted

to change after her 3 MRI's. She smiled big when she saw her princess dress,

and to our surprise she wore it the WHOLE day!

The anthropologist was nice. We wondered why he was going to measure Lila's head,

until we saw how many measurements he took (about 30).

 

We had seen on a craniofacial parents board how so many of the kids/toddlers cried and cried at this particular appointment - understandably so.  But not Lila.  She complied with every request and smiled a lot....Dr. Kolar couldn't believe it.  It was only until he tried to measure her eyes did she finally get tired of the whole thing.  She doesn't like you to mess with her eyes.  She cried at that point, but it was at the end of the measuring so it went by quickly. 

Can you believe how good she was?!