The surgery is over!

I'm just getting around to posting this, but Lucy's surgery is over now!!! We met with Dr. Mackay around 11:45am and he said that everything went really well. He said she only lost a little blood and the bones came apart very easily and there were only a few little holes in the dura which is the lining in between the skull and the brain.

We got moved up to the pediatric ICU waiting room around 12:45 and shortly after that we got to come back and see her. We're in the room with her now. I wasn't shocked to see her all swollen already, but they said it's probably going to get worse. A lot of times the surgeon will put in a drain tube so that there isn't as much swelling, but our surgeon opted not to do that because he said the babies recover faster without it, even though the swelling may be a little greater at first.

She's still sleeping, but she will squeeze your finger if you put it in her hand and she's moving around a little bit.

Here are the pictures of her ... she's swollen, so if you don't want to see it, don't read any further ...

So we're praying for minimal swelling, that her stomach would be able to take food sooner rather than later, that she wouldn't be scared or frustrated because she can't open her eyes, and that her pain will be very very little. So far, God has answered our prayers over and above what we could ask for, so we expect His faithfulness to continue even in the small things!

Dr. Wrubel is finished!

We just got a call from our lovely O.R. nurse, Denise, and she said that Dr. Wrubel is already finished with his portion and now Dr. Mackay (the reconstructive surgeon) is doing his part. They only expect the surgery to take another hour and fifteen minutes, so probably about 12:15pm she'll be finished (we hope!).

Mom, me, and Wesley are still here waiting. Well, actually, it's just me and mom now. Wesley just got some coffee and went to walk around. Teresa and Clifton are going to walk home (thank goodness we live so close because there is zero chance they could get their parking spot back if they drove home!) and they are going to let Nina out and give her a chance to eat.

It will probably be another hour on top of the hour and fifteen minutes before we can see Lucy. She has to go to a recovery room and then be transferred to the pediatric ICU and get settled before we can see her.

I can't tell you how many messages and comments I've received from my friends and family today, and even people I've never met. You don't know how it feels until you've experienced it, but I have to say that it feels amazing. Like, cry a lot from happiness amazing. Thank you, thank you, thank you!!!

The surgery has started!

Doing her vitals before taking her back.

Our last family picture, pre-surgery.

Gigi, Lucy, and Papa.

My cutie pie.

Well, it has started. She ate for the last time around 12:30am this morning. Then she woke up around 5am and we had to give her the caffeine. She was in such a good mood and was just playing and laughing. We headed here around 5:45am and they took us back to the day surgery room around 6:40am. She started getting a little fussy but after they were done she fell asleep in my arms (a great answer to prayer!!!). We met with the anesthesiologist and our two surgeons and then the OR Nurse (Denise) came and got her. She actually held her arms out to Denise and went willingly with no crying! She took her giraffe Sophie and her pacifier with her. I just got a call from Denise and she said that Lucy went under the anesthesia very well and even though they had a hard time getting an IV in her, they finally got it in and the surgery started and is going well so far.

I'll try to post more as we hear anything.

Pre-op Appointment

Today was Lucy's pre-op appointment. We first met with a patient care technician that just asked us basic questions and took Lucy's weight and height. She is 27 1/2 inches long and I think she weighed about 16 lbs. and 8 oz. If that's true, she has lost a few ounces since her last pediatrician checkup, but since that time she has also started crawling non-stop so I guess I can attribute that little weight loss to the increased activity. Right? :)

Then a nurse came in and just talked over the procedures with us. Basically, she can't have any breastmilk after 1:30am, and she can only have clear liquids like water or Pedialyte until 3:30am. Then we're supposed to give her the caffeine at 5am, and have her at the hospital at 6:00am and then the surgery is going to start at 7:30am. So it sounds like I won't be getting much sleep Thursday night/early Friday morning!

The surgery is supposed to take 5.5 hours, and then it usually takes them about an hour in ICU before we can go see her. That's a long time without my baby!!!! But she will be out of it all that time so it's not like she will know we're not there.

We saw the waiting room today for the family while she is having surgery, and it's a lot louder and more crowded than I thought it would be. Of course it was in the middle of the day today so it will probably be different at 6am Friday morning, but still ... I will definitely be bringing a book and my computer because we can't really leave the waiting room all that much and that's a long time to just be sitting there. Plus, I think I will need some distraction.

They had to take her blood today and that was no picnic because they always have a hard time getting a good vein. After poking around a lot, they finally got enough blood and sent us home.

It was nice to talk with people today that could tell us what to expect. I feel just slightly more ready for the surgery now. I'm just ready for it to be over.

If you want to pray for us on Friday and beyond, here are a few things that I definitely know we'd like to lift up to our Father in prayer:

• Pray for an easy morning with Lucy on Friday and that she won't be super cranky because she's hungry, and that she will go with the nurse easily and with a happy spirit so that my mommy heart can rest assured. (and I won't start crying!)
• Pray for the anesthesiologist to have perfect understanding and wisdom as he doses out the anesthesia.
• Pray for the neurosurgeon (Dr. Wrubel) and the reconstructive surgeon (Dr. Mackay) and the nurses and technicians as they work on Lucy. Pray that the atmosphere will be calm and that God's spirit will just be resting on everyone.
• Pray for Lucy's recovery -- it's very common for the baby's heads to swell up and their eyes swell shut. Just pray for minimal swelling, and no complications as her head heals and as she comes out of anesthesia after the surgery.
• Pray for Wesley and I because I know that seeing our baby with a swollen face/eyes, a bandaged head, and disoriented from the anesthesia is going to make us super sad. Just pray that we'll have grace what lies ahead in the next week!

I really can't thank you enough. I know that Lucy has been covered in prayer since she's been born and we feel the support behind us, like a wind pushing us towards the finish line.

I'll try to keep the blog updated on Friday and the next week as the surgery occurs and we're in the hospital.

To leave on a happy note, here's a picture of my very active little girl with her best (canine) friend, our dog Nina. They are too funny together.

7 months old

Technically, she'll be 7 months old tomorrow, but I had a free moment to blog, so I thought I would just give a little update.

I took her in today for a "shot-only" visit and a follow up to her little E.R. visit from this past weekend for vomiting and they weighed her and I think she weighed 16 lbs, 12oz. I thought I remembered that she weighed 17 lbs.+ at the visit before but a quick check of their records said she had gained weight since the last visit so I guess my memory is wrong. What else is new these days?! haha.

She's doing much better after what appears to be a tummy bug of some kind over the weekend. She is almost back on her normal eating schedule. I haven't been giving her any solid food since Sunday so we may try to re-introduce those in the next few days slowly.

Just a little rundown of Lucy these days:

Likes:

- "Crawling" everywhere. If you put her down, and turn your head for a second, she will have crawled almost across the room. She doesn't get herself all the way off the ground yet ... it's more of a inching across the room by pushing up and flailing forward. :)

- She likes to talk, and her favorite sounds at the moment are "dadadadada", "nanananana", and little whispers like "shhhhh". She laughs all the time.

- Chewing on the dog toys for a second until Mommy notices and takes them away.

- Eating carrot and pear baby food, although Mommy makes her eat other things like sweet potatoes, peas, and apples, too.

Dislikes:

- Having her fingernails clipped.

- Having her nose suctioned for boogies. :)

- Drinking her caffeine twice a day.

- Mommy taking away the dog toys. haha.

Only 24 more days until her surgery. I'm not looking forward to it, but in a way I feel like I've been waiting for this day to be here since she was born so there is an excitement about having the surgery over and done with and having other things to look forward to, like her first Christmas and her first birthday. And after all the times we've had to be in the hospital with her, having a planned surgery and knowing what to expect is almost a blessing. I also hope that after her surgery they will let us take her off the apnea monitor and the caffeine eventually. So those are many things to look forward to.

I will probably update closer to the day of her surgery. We have people that are set to give blood for Lucy, and then we have a pre-op appointment a couple days before Lucy's surgery. By the time Lucy is 8 months old, she will have already had her surgery done!

6 month old stats...

They usually give me a little sheet with her height and weight on it when we have her pediatrician visits, but this time they forgot. So, my numbers may be a little off ... I'm going from memory and my memory these days is a joke.

So I think she weighed 16 lbs, 7 oz. She is 26 inches long, and I can't remember for the life of me what they said her head circumference was. I don't usually pay attention to that number since it's a little off because of her cranio.

She's eating rice cereal and we started sweet potatoes this morning, in addition to her normal nursing schedule. It's really fun being able to feed her food with a spoon, and Wesley enjoys being able to feed her, too.

Well, it's beautiful October weather, so we're off for a walk!

Appt. with the pediatric ophthalmologist

Ask me how long it took me to learn how to spell ophthalmology correctly... ;-)

We had Lucy's visit with the pediatric eye specialist (that takes less time to type than the 'o' word!) that Dr. Wrubel referred us to. I knew that one of Lucy's eye wandered and I just assumed that they would tell us that the surgery would correct it or that she would grow out of it or something. But the first thing that his P.A. said was that both of Lucy's eyes have strabismus (the medical term for an eye that turns outward) but that Lucy is good at controlling it in a sense. She can independently switch from one eye to the other, which she said was good. We saw the doctor and in basic terms he told me that what was wrong with Lucy's eyes was not going to be repaired by her cranio surgery and that it would require an additional, though less extensive surgery. And he said that her vision is probably already set, and even with the surgery she would probably never see with both eyes the way that most people do. She'll be able to see just fine, but it won't be the same "3-D" way that you and I see. It's almost as though you were covering one eye. You can still see everything just fine, but distance and position is a little hard to tell.

The problem with Lucy's eyes is that the muscles holding her eye ball in are just slightly in the wrong place. The surgery would move two of the four muscles back where they are supposed to be and he said that would correct her problem aesthetically. He said it's an outpatient procedure, but the next step is to talk to Dr. Wrubel about whether we should do the eye surgery prior to her cranio surgery or after. He was thinking after, which I believe Dr. Wrubel will probably say also. Another concern is that the surgery would require general anesthesia, and again, with Lucy's recently diagnosed apnea, general anesthesia isn't such a great idea and should be limited to only medically necessary times and as little as possible.

Here's my feelings about all of this: I'm a little disappointed. I thought it was just going to be an easy thing to fix or outgrow. I hate the word 'surgery' and I was sad to hear it again today. But, I don't mind if the surgery has wait even until she's a year old or even older if it's just going to be an aesthetic fix and won't correct or damage her vision either way. I also know that doctors tend to give you the worst case scenario. The cranio surgery may correct it. She may be able to see with both eyes for all he knows! :) I also know the God that made Lucy and I pray daily that He will heal her and make words like "never" seem pointless.

I think it's just been a hard week for me and Wesley as parents. It seems as though the bad things are piling up on our sweet girl and it's easy to get stressed out and fearful about it all. But we just keep reminding ourselves that God is in control and that a year from now, this might all be a distant memory and we won't even remember what it was like to be afraid that Lucy was going to stop breathing or that she wouldn't be able to see correctly.

And I know that we did genetic testing way back when she was a little baby, and it came back that there were no genetic abnormalities present to show that she had any syndrome related to her craniosynostosis ... but the more things that come up with Lucy and the more research we do, I'm not entirely convinced that she may not have a mild case of Crouzon's Syndrome. Of course, if you look up that syndrome and see pictures of the patients, you would think, "No way does Lucy have that!" but that's why I say a very mild case. There are just too many things to think that they just all randomly happened and are not related to something. I e-mailed the geneticist again today just to ask his opinion and to see if there is any way we could have missed something. It doesn't change anything one way or another if she DOES have Crouzon's, but I think it would help doctors to better understand her conditions. It would also let us know that there is a risk that any of our future children may have the same problems, and it would let Lucy know (when she gets old enough to care about this) that there is a chance her children would have it, too. It's not life-threatening, and if she has a mild case then you might never see anything about her that would make you think she had it unless you knew all the other symptoms.

We're ready for all of this to be over! Lucy has her E.R. followup/6 month visit on Monday with her pediatrician and her surgery is right around the corner!