Every day it's a little better

Lucy is doing really great, in my opinion. In fact, if it wasn't for the swelling she still has or the nasty-looking scar/stitches across the top of her head, she seems to be back to her normal self. She is laughing, smiling, playing, sleeping MUCH better, and eating great. She is still pretty mommy-needy but that also may have nothing to do with the surgery. I haven't given her any Tylenol since last Tuesday or Wednesday, I think. It's hard not to be impatient and want the swelling to go down, but I keep reminding myself it may be a full month after the surgery until her swelling is completely gone, and even longer until her head shape is in its settled state.

Here's a picture of her from yesterday. You can see her eyes are still swollen and the top of her head is still swollen, but other than that she looks great!

One week post-op

Her shirt may say "Daddy's Little Girl" but don't be fooled -- this baby is a mommy's girl all the way! (At least for now)

There are those blue eyes peeking out! You can see how much the top of her head is still swollen, but that's to be expected. Our plastic surgeon even said that she may still have swelling at 3 weeks post-op when we go back to see him.

I know I have said this before, but I can't believe Lucy's surgery is over and we are a week post-op. I mean, this time last week she was so swollen and bandaged that we barely recognized her. And although she is still very swollen in the front top of her head (basically where they were cutting and moving things around!) she is starting to open her eyes more and is sloooooowly but surely getting back to her old self and her old routine.

That has been the major challenge of being at home. I knew it would be, thanks to the other blogs of cranio parents. I hope my blog can be the same kind of roadmap for other parents just finding out their baby has craniosynostosis and that surgery is in their future. The hardest part of being home has been that she has been very needy and her sleeping schedule was all out of whack. Last night she didn't want to go to sleep until almost 1:00am and then only because I just put the swing in her nursery and let her swing for a while and she finally fell asleep and then I moved her to the bed. She wants to be held constantly and even when she is being held she is very fussy. I haven't had to give her too much Tylenol -- just about 3 times in the 3 days we've been home, so I think that is pretty good. Today she didn't seem to be in any pain at all. She took better naps today and tonight she went to sleep around 7:30pm and has been asleep ever since (it's 9:30pm now). But my favorite thing is that her little personality is returning. Her happy smiles and babbling and laughter is all I need to reassure me that she is doing fine, regardless of the swelling and scarring and all the other scary things about her right now.

These past few days, for the first time since Lucy was born, I can finally imagine a time where Lucy's head is not a thing of concern. Where trips to the doctors are years apart and only for regular check ups, not for emergencies or surgeries or anything. Any other cranio moms reading this know -- you literally can't think of a future after the surgery until it's over, and then it's like all of the sudden your whole life seems to stretch out before you and it's exhilarating.

I'll keep posting pictures every day so you can see her pretty eyes opening and the swelling going down. I think it's great to have all this stuff written down for posterity -- not only for other cranio parents who are going to go through the same thing, but so we can look back a few months from now, or a year from now, and see how far we've come!

We give thanks.

We really have so much to be thankful for. I know so many of you that read this blog and have been praying for Lucy. At the risk of sounding like a broken record -- THANK YOU! You are high up on the list of things we are thankful for today.

Lucy barely slept last night. She would sleep about an hour, wake up crying and was very hard to console. Then after about an hour or so she would fall back to sleep only to wake up soon after crying again. Wesley was up with her for a while but she is very much a mommy's girl these days and I had to come in to take over. I hate that because I like for her to spend time with other people, especially her daddy and her grandparents, but it seems like in the past few weeks and especially since the surgery she only wants to be with me or be held by me. That's hard for me sometimes because I do have things I need to get done and sometimes I just need a break! But I'm hoping it's a phase.

I don't notice any difference in the swelling today but I'm with her all the time so it can be hard for me to tell.

Wesley and I were in her room late last night and she was just playing and not sleeping so we just sat her in the crib and let her play. She turned around, grabbed the crib railing, and just pulled herself right up to a standing position and then stood there bouncing, like she had known how to do that all along!!! We couldn't believe it. It's so crazy!! I mean, one minute they've never done something in their whole life and then they just do it. She never even seemed the slightest bit interested in pulling up/standing up, so I was really surprised. Of course, after that we realized that we needed to lower her mattress because she could just pull herself right on over the railing. So that is always fun to do at 12:30am when you are tired.

Here are some pictures from yesterday and today. Happy Thanksgiving!!!!

Today (11/25/10) playing happily in her swing.

Yesterday (11/24/10) with the balloons and the soft little teddy bear that Wesley's co-workers sent her! Thank you!!! She loves them.

Yesterday morning (11/24/10) sticking her little tongue out. You can see that one eye is more open than the other.

"Mommy, why can't I open my eyes all the way?"

First full day at home

Last night wasn't too bad. She wouldn't nap in her bed yesterday -- she only wanted to be held. But last night she finally went to sleep in her bed, but much later than she normally would. I wouldn't say it was a great night. She was basically awake from midnight until 4am this morning. Wesley got up with her some, and I was up the rest of the time. I ended up giving her some Tylenol around 2am but I'm not sure that helped. She would fall asleep in my arms but as soon as I would lean over to put her down she would wake up and start crying. I think she just slept in her bed finally from sheer exhaustion.

Today she has been in a much better mood. I let her nap in my arms this morning and this afternoon she finally fell asleep in her bed just now. I am hoping tonight will be better.

Her swelling has gone down just a little more and she can open her eyes about halfway now, which makes her really happy. She still seems to be really mommy-needy.

I just can't wait until her swelling goes down all the way! I'll post some pictures soon.

Wesley's mom is headed home tomorrow so we'll be by ourselves for Thanksgiving. We're used to it because Wesley has always had to work the day after Thanksgiving so we've never traveled. I kind of like it that way, though! No stress or packing. We always go to Waffle House. We may get it to go this year but we'll see.

It's over?!

We're at home now! Surprised? haha.

I can't believe it. It's over. I mean, don't get me wrong -- she still has so much swelling and I know that the road to total recovery is a long one. But now we're at home where we can set our own schedule and we don't have to worry about being attached to five wires and weighing her diapers and trying to convince the nurses that 5 - 6 minutes of nursing on each side is completely normal for Lucy.

I think it's completely due to the prayer that was sent up for us. I've been astonished by how easy this whole thing has been. Would I want to repeat it? Heck, no! My baby has been in pain and been frustrated and I'm tired, but we had to do it, and it's over now. I still can't wrap my head around it. This surgery has been the turning point in the timeline of Lucy's life: pre-surgery and post-surgery. I feel like our post-surgery life has just begun, and I'm so excited.

Lucy's eyes are just barely open, like little slits. But she is SO happy to be able to see. She didn't want to lay down in her bed and nap today, so we let her sleep in the swing. I expected as much from reading other cranio baby blogs. But just now I fed her and laid her down in the bed and she whimpered for a second but then she just went right to sleep on her back, which is unusual for her.

Teresa is going to stay here tomorrow to help me while Wesley works and then she is headed home Thanksgiving Day. I couldn't have done it without her -- literally! She came to the hospital at almost every meal time and let me go eat by myself, even if Lucy was really upset or crying or whatever. What are we going to do without our Gigi? :)

Just barely peeking ....

Hanging out with her best doggie friend at home.

A picture post

These pictures are in reverse order due to my inability to understand Blogger well enough to do anything about it. :)

Daddy holding a sleeping Lucy the evening of 11/22/10. Notice she is wearing a onesie now! We happen to own one onesie that snaps all the way down the front instead of having to pull it over her head. I imagine we will have to buy several more of those until Mommy feels comfortable enough to pull things over the scar.

We said, "Smile for the camera, Lucy!" but it's kinda hard to do that if you don't know where the camera is. (sad)

Lucy playing with Gigi.

My baby girl on the afternoon of 11/21/10.

Sleeping all propped up.

With her daddy -- I think this was taken on Sunday 11/20 maybe...

Covered by the beautiful healing quilt made by the amazing Corinne Cramer.

Covered by her blanket from CappsKids.org -- a wonderful organization that provided so much information and support for me through this whole ordeal!

Listening to Nana and PopPop.

Playing with Mommy on Saturday morning 11/20/10.

I was busy loving my baby.

Sorry I haven't posted more today. Lucy has been super needy, which I don't mind, but it has meant either me holding her or me letting someone else hold her while I eat and use the restroom, so there was no time to blog. Or take pictures apparently because I think we only took two pictures today after Wesley asked me if I had taken any and I realized I didn't.

Lucy slept great (relatively) last night. She was waking up about every three hours and she obviously either didn't make a peep in between those times or I was super tired because I got to sleep during those three hours, too. It seems like the only reason one or both of us woke up was because someone was coming in the room. So I felt refreshed today.

Her swelling has gone down considerably. She took lots of naps today and she is just on Tylenol now, about every 8 hours or longer depending on her level of pain. I know when she's in pain when she's just gotten up from napping, just been fed, and just been changed, and is being held and is still crying or acting miserable. They took out all of her IV's which is so nice.

She tried to open her eyes a few times today, and I think she actually succeeded, but she could only do it a tiny bit and only when laying down. She still can't do it when sitting up. We're letting her sleep basically sitting up and hoping the swelling will go down enough overnight for her to open her eyes enough tomorrow that they can check her out and send us home.

We finally made it to a regular room on the floor today!!! Oh, regular room, how I love thee. Let me count the ways:

1. We can eat food in our room.

2. We can have as many guests as we want in our room.

3. We can come and go whenever we want and not have to "stay in or stay out" from 7-8am and 7-8pm every day while the nurses change shifts like we did in the PICU.

4. She only has to wear a pulse-ox monitor while sleeping and the rest of the time she is totally unplugged.

5. Therefore, she can now wear clothes!

6. We can take her around the hospital like to the garden and the playroom now.

7. Nice crushed ice machine in the family lounge. :)

So we are hoping she will go home tomorrow because all they are waiting on is to see her eyes and make sure it's all okay. I'm not getting my hopes up because I know it very well may be Wednesday because we are totally ready to go, but either way it's soon!

Oh my -- there is a SCREAMING child across the hall from us. I do hope this isn't an all-night thing considering it has been going on for about 45 minutes now.

I will just make the next blog post a picture post to catch you all up.

Hope persists...

Well, Lucy hasn't opened her eyes yet today. I know it was a lot to hope for, but I have a feeling at least by tomorrow night she should be able to open at least one eye a smidge. (Smidge is a Southern unit of measurement, y'all! haha)

The rest of the afternoon she did really well. Being the semi-immature parents that we are, we pretended like Nina (our dog) was in the room and we were like, "Nina, go get your ball" and stuff like that BUT we only did it because Lucy LOVES Nina and as soon as we started saying her name, Lucy started smiling and saying, "Hey" and acting excited. Oh, the things you can get away with when your child can't see temporarily. ;-)

Teresa (her Gigi) stayed with her tonight while Wesley and I went and grabbed some Pad Thai from Doc Chey's for dinner, and then again while we ate the Carvel ice cream cake with my parents who had come back to give me my birthday gift. I got some sweet cards and awesome presents from quite a few people, so you know who you are -- THANK YOU! I won't call this my favorite birthday ever, but I have so much to be thankful for.

This is my first birthday with a baby (I was pregnant last year for my birthday but, you know, my first birthday with Lucy outside the womb!). We're in the middle of a process of healing that will hopefully mean no more surgery and no more problems for Lucybird. So for that, and for the amazing outpouring of love and support I've received, I am thankful and humbled and I can celebrate that any day of the year -- no birthday needed! Plus, Wesley promised we could celebrate my birthday again when we get out of the hospital. His birthday is this coming Saturday (Nov. 27th) so we'll have a double birthday celebration ["Double birthday, double birthday, 'cross the sky, yeah, yeah, yeah, so intense."]

Since Lucy is sleeping now I guess I will try to lay down and get some sleep. No word yet on getting into a regular room. I think we've given up on that. Until tomorrow ....

Happy birthday to me...

A rough start to a good day.

Well, first of all, it's my birthday!!! Yay! I love birthdays (mine and other people's, but mostly mine ... teehee) and even though this year is a little different, it's not a big deal. I've gotten a ton of Facebook messages and texts from people, and I even got balloons and gifts and a ice cream cake that I asked for!

Lucy did well last night. She would wake up and eat and then go back to sleep, but she was a restless sleeper. I got about 2 hours of sleep total. She woke up this morning and she was not a happy camper. She was just crying and she didn't want to eat or snuggle. They said they only wanted to give her Tylenol so they did, but then she just kept crying and crying so they ended up giving her more morphine. She hadn't had any pain medicine since yesterday around 4:00pm.

One of the residents talked about sending her home today and I was like, "Excuse me?!" Not even 48 hours after her surgery? But I think he was saying that because they still don't have a regular room to offer us. But the other doctor, his boss, came in and said they want to keep her until her eyes are open at least.

My parents came by and Wesley's parents are still here and she's sleeping in her Gigi's arms now. I have hope that her eyes will open at least tonight or by the morning time. I'll update once that happens or once we get moved to a regular room.

That's our girl!

My parents are here now visiting. Lucy has been sleeping a lot today on and off. Wesley is at the house with his parents getting some much needed sleep after being with her here last night.

She hasn't had any pain medicine since 6:30am this morning but seems to be doing great without it. I really think that any crying is due to her frustration at not being able to see and the skin itching from being swollen. But when she has been awake she has played with her toys and even did a little "singing" and that made me so happy to see her being her normal self in spite of her current condition. What a blessing.

We're still waiting on a regular room (not in the ICU) ... but the hospital is full so there aren't any beds to spare at the moment. We're here until they have a room free. It's fine with me -- the ICU tends to be quieter and the nurses have less patients so I don't feel as bad if I need them to do something for us.

I'll update next whenever I have more information to share. The prayers are working -- we are so grateful to our Father in Heaven and to our friends and family who have been continuously petitioning on Lucy's behalf. What more could you ask for in life?!

First day post-op

Wow, just writing those words "post-op" are amazing. We are post-op now!!! No more waiting around for a surgery to happen and dreading all that comes after it. We are living it, and by God's grace and His faithfulness, we are doing great.

They decided last night to just give her Pedialyte and see how she did, so Wesley decided to stay with her and I reluctantly went home to get some sleep, knowing it would be the only night I would have that chance. So I went home around 10:00pm last night. It was so hard. Lucy had been pretty upset when I left the hospital just due to pain and frustration and probably hunger, too. I got in the car and just sobbed the 6 minutes it takes me to get home. But I also prayed and I felt a peace and I knew she was in good hands with Wesley, of course! :)

I slept until about 12:30am and then pumped. I set my alarm for 5:30am (at least I thought it was a.m. ....) and proceeded to sleep some more. Well, the next thing I know I wake up and it's 8:30am!!! I accidentally set my alarm for p.m. (duh!). I panicked! I got up and Clifton and Teresa were gone and I couldn't reach anyone on the phone so I was so worried. I just threw on some clothes and just as I was leaving Clifton came back and said he had taken Teresa to the hospital so that Wesley could get breakfast and that Wesley wasn't expecting me until 9am anyway. haha. oh well. I still rushed over.

A lot had happened last night. (This is all from Wesley's information since I wasn't here). They took her head bandages off, and she only needed pain medicine twice last night. Wesley said he got a little bit of sleep. When I got back this morning Lucy was in a good mood. I think honestly that the fact her eyes are swollen shut is frustrating her more than anything else. But they finally said I could breastfeed her this morning, so I did. I think that improved her mood like 95%. Afterwards she was saying "Hey" (her favorite "word") and sort of just moving around like her normal self. I had to go pump again since she only wanted one side, and when I got back she was sleeping like a champ. She's still sleeping now and by the snores I hear from behind me, I think Wesley is sleeping, too. :)

They think that she may go to a regular room today, which is great. It allows for more flexible visiting and just generally more flexibility overall. My prayer for today is that Lucy can get into a nice eating/playing/sleeping pattern and that the swelling will continue to decrease and by tomorrow morning we'll see a huge improvement I hope. God has been so faithful and everything we have asked people to pray for He has shown up in a big way. I don't know why I expected any different, though!

I will post some pictures of this morning. Her head looks a lot worse than it is because there is a lot of dried blood which makes it look awful but if you disregard that you can see that her incision is so neat and clean and it looks great. I'll post the pictures below, so just go bye-bye if you think they will bother you. :) Also, I look awful today, so just disregard that, too! haha.

Giving her some Pedialyte this morning before they let me feed her.

Crazy, I know. She looks so swollen -- but it's part of the process so we embrace it!

Getting worse before it gets better

She is definitely more awake now and has started crying and it's such a pitiful sound. Her eyes are also swelling up quite a bit more and are turning black and blue. It's so hard for me to see her like this and know there is nothing I can do except comfort her. Just pray that she will continue to heal quickly and that she won't get too upset or be in pain.

Wesley may stay here tonight instead of me since I'm not sure they are going to let me feed her. We'll see how she's doing around that time, I guess.

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.