More Before & After

We had a busy weekend full of birthday celebrations and playing nurse to both our kids. After his totally awesome third birthday William came down with croup. He's doin' it up on the couch in front of the Disney Channel as we speak. Here's hoping it's all gone come Thanksgiving break.

Lucy has been doing well. We've cut back her pain meds to nighttime sleeping only and she seems to be doing just fine as long as we're not trying to get her dressed or lay her down to change her. Extreme torture, you know, even for a baby who hasn't gone under the knife. The only other challenge for us lately is that her antibiotics cause diarrhea and so we've been doing major clean-up every. single. day. 'Nuff said on that topic.

Each day that goes by Brian and I cannot get over how different Lucy looks -- and by that I mean for the better. If you've only ever seen Lucy a few times you might not notice a difference. But I keep saying that I never realized how bad her sagittal synostosis was until it got fixed. Everything just seems so much more proportional. Her forehead isn't as long. Her eyes aren't as wide apart. In fact, I think her eyes are even bigger because some of that pressure from her forehead jutting out has been removed. And the doctors say that her final head shape still won't be for another couple of months.

Before - October 15, 2009

Before - November 12, 2009

After - November 22, 2009

Hey Don't Forget About Me, Guys!

It was a certain someone's birthday today. Lucy did a great job at letting the spotlight shine on her big brother for a little while. We swam, we ate pizza and cake and opened presents. Then we came home and we all fell down.

Happy birthday, William! It has been a supreme privilege being your mommy these past three years. We love you!

Day 5

Last night was pretty good considering it was only her fourth night post operation. She woke up a little after midnight needing some pain meds. They take about a half hour to kick in so she and I wandered downstairs and watched some DVRed "Ellen" and "Oprah" until she started to feel more comfortable. There was something soothing about being awake in the dark and quiet of my own home with my baby girl.

She awoke again around 4:30 a.m. and this time Brian went to comfort her. Again she was in quite a bit of discomfort which is really difficult to watch. She has a tiny whimper accompanied by the biggest crocodile tears you've ever seen. That's how you really know they're hurting. When they can't even muster a cry.

When she got up for the day today I noticed the swelling has gone down quite a bit. We put her to sleep on an incline in her crib and she prefers to sleep on her side. Each time to we put her down we make sure she's on the opposite she was before. This means that her eyes alternate being swollen . It's pretty funny. First she's winking with her right eye. Then she takes a nap and when she wakes up she's winking with her left.

One of the biggest challenges we've been dealing with is that Lucy is currently on a ton of medication -- five, to be exact -- and she hates every single one of them. If she can manage, she spits them right out and into our face. So today I got a little creative and mixed four of them in warm apple juice and some baby cereal. She gobbled it up. So I think that will be the trick from now on.

After her dish of cereal I took some more pictures. These photos are more for me than anything else so that I can see the progression of change in her head but I thought you all would enjoy them as well.

Home!

Lucy finally had her own jammies on. Here she is with mommy ready to bust out of that hospital.

"Let's go, Dad!"

Saying goodbye to the nurses

Grandma welcomed us home with a big roast dinner with Uncle Jim's potatoes and some butternut squash. Goodbye hospital food! Lucy resumed her usual place at the dinner table.

And now for just of taste of the proof that this whole ordeal was worth it. Here's Lucy's before shot on September 17, 2009.

And here she is this evening just three days after surgery. The most noticeable spot is on the back of her head. Her neck, face and scalp are still quite swollen. We are told all the swelling should be gone in three weeks and her final head shape will appear within two to three months.

Both the kids are in bed and Brian just opened a bottle of wine. I think we'll settle in and watch our favorite Thursday night shows. Ironically, it's the exact same thing we did on our first night home after William was hospitalized. Getting back into the swing of things always feels so good.

Horray!

Neuro just gave us the OK to go home! They have to get some paperwork together and take the port out of her neck so it might be a while but it's definitely nice to know we'll be on on our own turf by the end of the day.

Thank you again for all your prayers. I just know Lucy would not have recovered as well and as quickly without all of you.

Therapy Dog Visit

Trooper visited Lucy this morning! He's a golden retriever therapy dog. I really wish William would have been here but Lucy thought it was pretty cool too.

Day 4

Last night was a bit of a roller coaster.

If you've ever had surgery or something similar you know how awesome it is to start feeling a little bit normal. That's how our Lucy girl was last night. She was laughing and giggling and want to jump-jump while standing on our lap.

So we went without her dose of Oxycodone thinking that maybe the Tylenol and ibuprofen would be enough.

But then 10:30 rolled around and she started to have the saddest cry in the world complete with the big lip and real tears. So I requested the Oxycodone again and within twenty minutes she was sound asleep.

The same thing happened at 3:00 a.m. She woke up, I fed her, gave her Tylenol and ibuprofen but it just wasn't doin' it for her. So at 3:30 I again requested the Oxycodone for her. I know a fussy Lucy and this was not her. This was a Lucy that was hurting.

Kids are resilient and our Lucy girl has been no exception. But I think we'll have to keep reminding ourselves that she did just have head surgery a few days ago and she deserves to have that pain managed.

She woke up this morning in great spirits. The swelling has reduced. Her right eye is wide open and she's able to get her left eye open to a slit.

The nurse came in this morning and gave her a warm bath which she loved. She's resting comfortably right now and we're just waiting for the neuro team to make their rounds so that hopefully we'll get an a-OK to go home today! We'll keep you posted.

Bouncing Back

Every time I walk into Lucy's room I want to cry just a little because she doesn't look anything like my baby girl with all that swelling. She looks more like a champion sumo wrestler. But then she wakes up and talks and plays just like her old self and then I'm reassured that this is indeed my little Lucy.

The swelling has come down a bit. She was able to get her right eye open just a slit. As soon as she did that a huge smile went across her face when she saw daddy looking back at her. I just can't believe what good spirits she is in for just having her head cut open 48 hours ago.

Below are a few pictures of her sitting up and playing with her toys. If you compare these pictures with the ones we took right before her surgery you can see how swollen and chubby she looks from all the fluids. We're told every day will be a little better and all the swelling should be gone in a few weeks.

Off with the Wrap

Late last night - As you can tell, the swelling really started to pick up and by night time she wasn't able to open her eyes. A little scary for her at first but she calmed down at the sound of William's voice. I think she was bracing for the accidental hit to the face.

"Dad, I don't want anyone to see me like this!"

Lucy was not a fan of the doctors taking off her wrap and pulling out the drainage tube. I think that was a little painful for the baby girl. She's been sleeping quite a bit this morning and having that off is already helping some with the swelling. We'll start on Ibuprofen this afternoon and she might be able to open her eyes by this afternoon.

Both of lucys eyes have swollen shut so it was a difficult evening. She was awake but couldn't see anything so she was rather scared. Her swelling has increased dramatically since the pictures i posted and her eyes are black and blue. It's not easy to look at but we still think she's pretty cute. When they take the head dressing off tomorrow the swelling should go down. So if we can make it through the night, tomorrow should be better.
Good night!

Happy Girl

Swollen Beauty

As you can see from the photos below Lucy has a lot more swelling today. They gave her some Benadryl to help with the itchy feeling. She fell asleep from the medicine for a long time and when she woke up her left eye was swollen shut. Our little one-eyed bandit.

Thankfully it hasn't really altered her mood. When she's awake and her pain is under control it's easy to tell that she's trying with all her might to have the same personality as she did pre-surgery. She's kicking and trying to sit up and babbling away.

Today has been a pretty boring day. We like boring. Hopefully it will be a quiet night. Tomorrow's plans include removing her head dressing and drainage tubes. All the more closer to going home!

"Hi guys!"

Trying to smile through those massive cheeks!

William's Visit

"Hey Lucy, look at this cool airplane!"

We were just transfered to the general floor. It's so nice to have some peace and quiet in our own room. Send a text or call our cell phones if you're visiting and need her room number.

Had a wonderful night last night. I'm pretty sure shes some sort of prodigy. ODD helped too. Thats an inside joke for Uncle Mike. ANYWAY...she was up and smiling and attempting a giggle this morning. She was ok'd to leave the icu. We should be moved to the general floor around 1:00. I know a lot of you have asked about visiting and rather than respond individually I'll just say here that that should be just fine. Gillette is on the fourth floor of regions hospital. Follow signs to the PICU and then just ask a nurse for lucys room. Thanks again for all the prayers. They clearly were answered!

So excited to find out the preop nurse was wrong. Both brian and i get to sleep right next to lucy in the icu all night. I get to share a hospital bed with her! Hoping she'll sleep soundly with mama right next to her.

Photos From Today

Family picture this morning

Crib nametag

Getting her hospital gown on

"I don't WANNA have surgery!"

Mama checkin' in

Dad's turn

Thanks everyone for your love, support and prayers.

Things are going well. This afternoon went by a lot faster than I thought it would. The ICU is very quiet and peaceful right now -- unlike my tour last Friday. There is one other baby in here who had the same surgery as Lucy a few hours earlier. He is a little fussy right now so I assume that's what's to come for us tonight.

Lucy is currently resting soundly. She's opened her eyes a few times but is still pretty groggy from the anesthesia.

Our nurse is awesome. She'll be with us until 11:30 tonight. She wants to try to give her something for her belly when she wakes up. The morphine will start to wear off and we want to make sure her belly isn't completely empty when she's more alert.

She did throw up a little bit about an hour ago but the pediatrician told me that's very normal when babies (or even adults) are coming out of anesthesia.

That's the only updates we really have at the moment. Right now it's just watch and wait and see what she needs.

Thanks again for everything! We'll update when we have more news.

Lucy in Recovery

Jenny and I think she looks just like William when he was in the NICU. Mom had cold hands and she wasn't a big fan. But she took her nukie and settled right back down. It was a quick visit but we should have her in our ICU room in about 20 minutes.

Dr. Petronio just came to talk with us. He echoed dr. Woods statements. Said she did beautifully. She lost less than average blood. She was stable the entire time. They took out a 2cm strip from her skull. She has opened her eyes a few times and pupils look good. Shes got her beloved nukie. We should see her in a few minutes.

I also forgot to say that dr. Wood told us lucy is the cutest baby he's ever operated on. Well maybe thats what he said in my head.

PS...everytime we get paged brian goes to the phone to get all the info. The he hangs up and starts leafing through a magazine without saying a word like we are waiting for an oil change in our car. I have to say "BRIAN! What did they say?!" Drives me crazy. I'll still keep him though.

Just got paged again. She's in recovery. They will come get us when she starts to wake up. 20 or 30 minutes.

Just spoke to dr. Wood. He said everything went "like clockwork". Dr. Petronio, the ped neurosurgeon, is closing her up now. Still might be another hour or longer until we get to see her.

Just got paged by doc. He is finishing up and we were told to head back to surgery waiting room.

Dear Gillette,
You are a CHILDRENS hospital. Make a place for nursing mothers to pump in private.
Thank you.

Brian just bought the biggest bear claw doughnut i've ever seen so he'll be headed into heart sugery when lucy is finished.

We just had to say goodbye to the little Lucy girl. She was in surprisingly good spirits for not having anything to eat for the past 4 hours. Everyone here has been great and put us at ease. Updates in an hour. Keep her in your prayers.
--Brian

Tomorrow

Thank you so much for all the calls, emails, text messages, Facebook shoutouts and any other form of technological communication I'm forgetting. It warms our hearts to know everyone is thinking and praying for our family.

Tomorrow morning we will arrive at Gillette at 11:30 a.m. Lucy's surgery is scheduled for 1:00 p.m. We are told the actual surgery will last one to two hours but that she'll be gone from us for about four hours once you factor in all the pre-op and post-op work.

Gillette has Wi-Fi so we'll be able to make frequent updates on Brian's laptop as well as through our cell phones.

At this point I'm feeling a lot more calm and at peace than I thought I would. It must be all those prayers. Brian is currently playing poker online so I'm guessing he's doing OK too. Unless that's his way of hiding his fears. Naw...he just really likes Texas Hold 'em.

Anyway keep up the prayers. As a special intention please don't forget to pray for my favorite little boy as well. When I said goodnight to William tonight he expressed some concern about me being away from him for so long. I know he'll do fine but that mommy guilt will always get ya.

Alright I'm off to bed for a good night's rest.

Friday the 13th

Yesterday was not fun.

We had an appointment at Gillette's to have Lucy's blood drawn. She needed her hemoglobin and platelets checked and they needed to know her blood type for her blood transfusion.

Before the blood work the nurse gave me a little tour of preop, recovery, ICU and the general floor rooms. I wasn't super impressed. Having stayed at Children's during William's ordeal for almost two weeks I have a comparison point and Gillette's doesn't really stack up.

It was a little noisy and dingy. There is no where for me to stay on the first night except a very small shared family waiting room that is down the hall from where Lucy will be. This will be uncomfortable not only for sleeping but also the need for me to use my breastpump. On the subsequent nights there is a pullout chair for me to sleep on but nothing for Brian. Children's had full futons in every room -- even the ICU. Maybe someday when we strike it rich I'll donate some futons to Gillette's.

It's weird to me that with two healthy children I even have a comparison of the children's hospitals in the Twin Cities. But that's where we're at and we'll do anything for our kids so we're going to make it work.

After the tour it was time for the blood work.

That just reminded me of this one time when Brian and I were staying with my mom in Alexandria. We wanted to watch a movie one night and Brian made us rent Blood Work. I'm not sure if you've ever seen this little flick but don't let the fact that it stars Clint Eastwood fool you. The movie is beyond bad. Sort of like our blood work experience at Gillette.

Nice segway, eh?

ANYWAY, instead of a nurse doing the draw the anesthesiologist was in charge. It took him three time, THREE TIMES, to find a vein. And we're not talking just a finger prick here. She needed the full intravenous needle.

He tried one leg with no luck. Then he moved to the other leg where he got a little blood before he started to draw air. The third and final draw came from her arm. I was pretty livid especially since my little girl had four shots just three days earlier. By the third stick Lucy was in hysterics and completely drenched in sweat. I almost punched the doctor's lights out but thought that probably wouldn't be a good way to start our whole hospital experience.

When she was finished she looked like a battered child with all the taped up gauze.

On the positive side, Lucy was so tuckered out from all the activity that she took a four hour nap that afternoon.

Hopefully that will be the last time she'll have to be poked. On Monday all of her lines will be inserted after she's been put to sleep.

This weekend we'll be hanging low with the kiddos while we try to rest up for what will probably be a long, restless week.

Cheeky

Pre-Op Shenanigans

Lucy had her 6-month check-up on Tuesday where she was cleared for surgery.

She's in the 20th percentile for weight (14 pounds, 13 ounces) and 75th for height. My little model.

She received four shots and let everyone in the clinic know about it! The H1N1 vaccine wasn't available but she was able to get the seasonal flu vaccine. I'm hoping Gillette might have a dose for her during her stay. I don't want to complicate her recovery by getting stricken with any viruses!

Yesterday the Gillette pre-op nurse called me to cover all the details surrounding the operation.

Somewhere along the line, probably because we've be waiting two months now, I convinced myself that this surgery would be a cake walk. No big deal.

But when the nurse started saying things like "eyes swollen shut" and "a port in her neck" all my fears started rushing back.

When Brian got home from work I reiterated all the details I could remember. When I was finished I sighed and said, "This is gonna suck."

"Yep," he said, "It really is."

I hate that she has to go through this.

I hate that she can't nurse for five hours before the surgery.

I hate that I have to drag out my pump again.

I hate that I can't sleep in her room on the first night.

I hate that Brian can't sleep in her room any of the nights.

I hate that she has to have a catheter and a neck port and an IV and two drainage tubes.

I hate that she has to have a blood transfusion.

I hate that she'll be in enough pain to necessitate morphine.

I hate that she might have to stay in the hospital until Friday when we thought she would probably only stay until Thursday morning.

I hate that I don't get to be with William on his final days as a two-year-old.

Somedays I just need to say how much I hate this out loud so I can get it out of my system to make room for the more positive and optimistic thoughts.

Today is one of those days.

Our Little Lion

Here's our little lion on Halloween.

And our Elephant.

And here's our little circus animals grabbin' some sibling love.

And here's where Brian carved Lucy's future skull incision into her pumpkin. I'm not sure if I should laugh or feel disturbed. I think I'll laugh since I have too many other things to worry about. I'm sure someday I'll look back and think I'm glad we have those memories.

And here's where Lucy tells us how she really feels about her upcoming operation. I didn't realize Lucy's pose until after I uploaded all of my Halloween photos. How funny are babies?!