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!

6 months and more of the hospital ...

Sorry for the delay and not posting on the 27th, which was Lucy's 6 month birthday. We were in the hospital instead! No fun, but here's the story...

You know we had that scare about two weeks ago with her. Ever since then she was fine at home. We were excited about taking the monitor off 24/7 after two weeks. On Saturday we took the monitor off and she was only wearing it to sleep. She did great being watched by her Gigi and Papa while her mommy and daddy went on a date.

On Sunday morning, Teresa (her Gigi) was holding her and she was sleeping. I happened to look over at her and noticed that she had slumped over more and had started turning blue around her lips and even into her nose area. Of course it was super scary and we started doing all we could to get her to wake up and respond to us. She came around after a while. We didn't know what to do. We knew this had happened before, but we had no idea what it meant that it happened again. She seemed to be okay and was tired so we pulled out the Pack and Play and put it in the living room so she could nap there and we could watch her. We also put the apnea monitor back on her since it was off during the day. Clifton and Teresa left to go back to Thomasville. Lucy woke up from her nap probably not even 15 minutes after they left and Wesley was playing with her on the floor. She was sitting up, playing with her toys, when she just slumped over again and turned blue. This time we were freaking out. It had happened twice within about 30 minutes. The second time the apnea monitor didn't even go off when she had the episode. We tried to call the apnea monitor company, and I tried to call the pediatrician only to get a number for Children's Healthcare of Atlanta at Egleston. I had to wait on the line to get a nurse. Wesley spoke to her and after hearing everything, she said we should take Lucy to the E.R. I was so upset. I did not want to go to the hospital again. I just knew they were going to do all these tests and send us home with no answer again. But I was scared, so after packing a bag this time, we headed to the E.R. When we got there, there were several other families with kids in the waiting room so they gave us a number. While we were waiting, I was holding her, and she slumped over again in my arms and turned blue and I was calling, "Somebody please help me!" and these nurses ran out and grabbed her and rushed her into the trauma room. We finally got in there and they got her on oxygen and they were trying to get an I.V. on her and everything. While they were working on her, she started going splotchy in her face and then started turning blue again on the table. They quickly put an oxygen mask on her instead of the little nasal things and she came around. By this time, Wesley and I were both in tears and so fearful for our little girl. We didn't know why this was happening and how long it was going to keep going on. We were just so scared.

After about an hour or two in the E.R., they got a bed ready for her in the Pediatric ICU. We went up there. They didn't know what was wrong. At one point that night, while sitting up in the bed, she had another episode and her oxygen saturation got down to 17. Just to give you an idea, everybody's oxygen saturation should be right at 100, as in 100% of your blood is oxygenated. 17 means that for a few seconds, Lucy was only at 17% of what she should be at. They told us it might be something wrong with her heart, so they wanted to do an echocardiogram the next morning.

They did that test, and everything was normal (including another chest x-ray ... this girl has had a lot of radiation in her short life!). They told us they wanted to do a sleep study to see if she had obstructive sleep apnea. I guess there are two types of apnea -- one that you can have while asleep and one you can have while awake. They came around 8:30pm that night to put all the wires on her. There must have been 40 wires, no joke. Her head was all wrapped up and they had things on her nostrils and on her lips and her eyes and almost everywhere you can think of. So yeah, that's probably the best way to get a baby to go to sleep, right?! WRONG! haha. Let's just say that she would only sleep for about 10-15 minutes at a time, and only if I was standing there holding her arms and legs down. If I didn't, she would flail her arm and pull out a wire or wake herself up. So basically from about 9pm until the test was over at 3am, I stood beside her bed holding her down while she cried and didn't sleep. I guess that she slept enough, though, because the sleep study did show that she had both types of apnea.

The obstructive kind can happen when something is blocking the airway, in most basic terms. It could be the way her nasal cavity is shaped, or her airway, or something like that. They said there is not much they can do to fix that. They think the surgery may fix that some. The other kind of apnea happens because she has periods of time when she breathes, then doesn't breathe for anywhere from 5-13 seconds, then breathes again, and repeats that for a minute or so. What happens is that with the first delay in breathing, her oxygen levels drop some. With the second breath, she can't recover up to what she needs to be at. So with the second delay in breathing, her oxygen levels just drop even more. If she does that for a minute, her oxygen levels are so low that's why she turns blue and goes limp. They said they usually treat this with plain old caffeine. Yep, caffeine! I guess it speeds up her respiration and brain function just enough to keep her body breathing at a normal pace. So they started her on caffeine that day. It's just a syringe full of clear liquid caffeine that we squirt in her mouth and she (mostly) swallows.

That night, even though she didn't have all the wires on her, she just wouldn't go to sleep. I think the most she slept at a time was an hour. The rest of the night it was like 15-20 minutes of sleep then waking up crying. Finally, around 6:30am, I think the nurse felt so bad for me having not slept the whole night that she took Lucy out of the room and let the other nurses entertain her while I slept. I think I slept for 2 hours and she said Lucy fell asleep after a while, too, and got about an hour of sleep.

That morning, the doctors came in and told us that we could go home that day! I was so surprised because I thought they were going to move us to the general floor but the doctor said that all they would do there is just continue to monitor her and give her caffeine, and that's stuff we could do at home. So on Wednesday around lunchtime we packed up and went home.

Lucy still has to wear her apnea monitor 24/7, and she gets caffeine twice a day. We'll just continue that indefinitely but for sure until after her surgery I'll bet. It's annoying. The apnea monitor is a pain for her to wear and it's bulky to lug around. She hates swallowing the caffeine and I worry what side effects it's having on her digestive system. But it's better than having a baby that turns blue and goes limp and unresponsive, that's for sure.

We're very blessed to have an unimaginable number of people in our lives that prayed for Lucy and for us while we were in the hospital. I probably had hundreds of Facebook comments, and lots of texts and voicemails from our friends and family, telling us they were praying for us and asking if there was anything they could do for us. People were asking to bring us food and snacks and to watch Lucy so I could sleep. I just don't have the right words to say thank you. People even made their Facebook statuses things about Lucy, asking their friends (who don't know us) to pray for Lucy. How incredible. It's humbling, really. We don't deserve such an outpouring of love and support. But I will take every second of every prayer that people pray for Lucy's healing and recovery because I want it so badly also.

So her six month birthday came and went without much fanfare or celebration. I have no height or weight stats to share with you (oops, not true. She is 24 inches long. I know that because they had to measure her for the sleep study). We had a 6 month well visit scheduled for Monday, but we had to reschedule until next Monday for a well visit/ER followup.

Lucy also has her appt. with the pediatric ophthalmologist tomorrow morning. I'm not expecting to learn much -- it's mostly just a chance for this doctor to see her and get an idea of how she is pre-surgery so that he will know better what is different post-surgery.

We joked while in the hospital that Lucy is just like her mommy and wanted to check out the hospital floors she was going to be on after the surgery so she could plan better. :) Well, we've seen the PICU and we've seen the 5th floor East, so we're all set. I just hope after her surgery we get a room with a better view than the ones we've had previously (parking garage and blank brown wall, respectively). I also know what things we really need in the hospital (good toilet paper, juice that's not from concentrate, and comfy socks) so we can pack those things when we go in next. After this year, I never want to see Children's Healthcare of Atlanta - Egleston again!!!! No offense to the hospital, but I have seen QUITE enough of you!!!

Here's a picture of Lucy after she fell asleep on one of the nurses the morning she was being entertained while I slept:

A little scare.

This past Saturday started out really normally. Lucy ate around 7am and then went back to sleep for about 45 minutes then started fussing. Wesley offered to go get her and then he brought her back into the room and we all played with her in the bed for a little while. Then Wesley took her to the living room to entertain her while I got a tiny bit more sleep. As I was waking up (around 9am) he was changing her diaper. All the sudden I hear him saying, "Lucy, what's wrong?" and then in the next second, "Babe! She's not breathing and her lips are turning blue!" Of course everything starts moving in slow motion. I jumped out of bed and threw my glasses on and he was holding her and she was really limp. Even though it seemed like forever, by the time I got in the nursery she was breathing again but she just kept acting like she was falling asleep and she wasn't really responding to us and she was still acting like she wasn't getting any air, even though I knew she was breathing. We had even checked her mouth just to be sure by some freak chance she had grabbed something small and choked on it. Nothing. We decided to call 911 because she was still just acting so strange. They got there in about 3-4 minutes and she had started to just move around a little more after we put on flat on the couch per the 911 operator's instructions. They checked her blood sugar by pricking her toe and I guess it came back normal. Then they asked us which hospital we were going to take her to. I was really surprised -- I guess I hadn't thought about having to take her to the hospital. Since she's been to Egleston before and it's right around the corner from our house, we decided to take her there. They said she didn't need to ride in the ambulance but that we could take her ourselves if someone sat in the backseat to watch her. We just literally threw on our shoes and headed to the ER. They got her checked in and when they put in back in a room she started to have another episode where her oxygen levels went down and she was very limp and unresponsive. So they moved her to a bigger room and put her on oxygen. I don't know all they did in the next few minutes ... I know there were at least 3 doctors and 4 nurses in there. They drew her blood and gave her an I.V. and the whole time she's just screaming and it was so hard for me to hear that. But her screaming was better than her being limp and unresponsive! They finally let me hold her after they had done all their tests. They did a chest X-ray, a CT scan, and a lumbar puncture to rule out meningitis. They let me hold her and just wheeled us both around to get the CT scan. She was a trooper. Even during the lumbar puncture she basically fell asleep while they were doing it (after crying during the initial insertion of the needle). Nothing was showing up, so they said they at least wanted to keep her overnight for observation. They also wanted to do an EEG so they could see if it might have been a seizure. They gave her I.V. antibiotics in case it was an infection.

It was like deja vu, having to rush in to the hospital with her wearing basically pajamas and not knowing what was wrong with our baby. I cried a lot for a few hours. Then eventually they said she was doing well enough that she could go straight to a room on the regular unit, and not have to go to the ICU. So that afternoon we went up to the regular floor and they took her off oxygen since she seemed to be doing better. They also let me start nursing her which definitely made me and her feel better. This was about 2pm and she hadn't eaten since 7am that morning -- she had only had the IV since about 9:15am. I think when we got to the regular room and they took her off oxygen and I was able to feed her I calmed down a ton and just prepared to stay. Wesley went home and let our dog out and got us some clothes and toiletries.

What was cool (if you can call anything about that situation cool) is that the floor we were on at the hospital is the same floor she'll be going to after her surgery to recover. It's the "neurological" floor they called it. She will have the same nurses and a similar room. It was really good to know that. I have to say, I HATE going to the hospital with Lucy, but I cannot say enough good things about Children's at Egleston and their doctors and nurses. They are so supportive and so perfect to work with kids and their parents. One nurse hugged me in the E.R. and all the other doctors and nurses make sure to ask if you understand everything that's going on and they know it's frightening and they just try to make it better. Like letting me hold Lucy while they transported us everywhere instead of just making her lay alone on the bed.

The only test they were waiting on was the EEG, which I guess can't be done on the weekends unless it's an extreme emergency. So we knew it would be Monday before we could have that done, but we were hoping we could come home and then go back to do it outpatient. But the doctors said they wanted to keep her in the hospital through Monday just to be sure nothing happened again since they said if it was going to happen again, the greatest chance would be within 24-48 hours after the original incident. So we were stuck there until Monday afternoon. But I have to thank our friends Drew and Diane (and little Anna!), and Jeri, and Sarah and Jarrett for coming to visit us. It definitely made things easier and just less boring and overwhelming. I'm sure visiting a hospital on the weekend isn't their idea of a fun thing, so we really appreciate it.

Lucy slept great both nights and the only thing that bothered her was this hard splint on one arm to keep the I.V. in and the fact that the nurses and doctors were always in and out at odd times checking her out and getting her vitals. Wesley went home both nights to sleep since there was only one pull-out couch bed in the room. (I'm guessing this will be what happens when she is recovering from her surgery, too.)

So the end of the story is that we just don't know what happened. Nothing showed up -- everything was normal. They are making her wear an apnea monitor for about 2 weeks 24 hours a day (except for bathtime) and then for about a week just when she's napping/sleeping/in the car seat. It's just a band that goes around her chest that has electrodes in it that measure her heart rate and her breathing. It's really annoying because it has to be plugged in as much as possible so wherever we go, even from room to room, I have to carry the big pack around and all the wires, etc. The wires are always getting tangled up in her legs, too! But it gives me some peace of mind knowing that God forbid, if something should happen in the next few weeks, the monitor would let us know immediately. I'm hoping nothing will happen and nothing will show up!

They also made us take an infant CPR class yesterday before going home. It was really good for Wesley and I to learn about how to do CPR on Lucy should we ever need to. It just gives me confidence that we at least know what we're doing but I hope we never need to use it!

So we're back at home and just enjoying all that means ... our own beds and homecooked food and only a few wires attached instead of lots of wires. I'll be glad when we can take the monitor off, too!

Another good thing is that we thought we didn't know her blood type, but while we were there I asked about it again and they looked in her records from her previous hospital visit and the blood type was there: O+! So now we know and we can find people to donate since neither Wesley or I are a match (B+ and A+ respectively). But we know Lucy's Gigi is a match and we have lots of O- volunteers, too, which is a blood type she can receive.

So, you know, just another eventful weekend in the Fielding household! Looking forward to this weekend and all it's boringness! :)

Lucy in the hospital -- everyone remarked on how happy she was and how friendly she seemed to be. :) Our little sunshine.


Wires: the fall's hottest baby accessory.

5 months old

I usually post on the 27th of each month, but Lucy had her regular doctor's appointment today instead of Friday so I waited. :)

So we took her today for a regular visit, complete with a shot. She did very well and the only side effect I noticed is that she took an extra long nap late this afternoon.

She weighed 15lbs and 5oz! I was so surprised. I only expected her to weigh almost 15lbs, but not over it! Awesome. They didn't take her length or head circumference since it was a "vaccine-only" visit.

We still haven't gotten her blood typed yet. I'm procrastinating because I don't want to have to watch her get her blood drawn, but I know I need to do it so I'm just going to force myself to take her in the next week or so.

The only other doctor update is that we made an appointment with a pediatric opthalmologist on October 1st so he can check out her occasionally wandering eye and get an idea for what it's like pre-surgery so he can better assess her post-surgery needs.

I feel like she is just growing up so quickly. She is eating about every 3 hours during the day instead of 2 hours like she had been. I think next month we might start introducing rice cereal and then other baby foods. She is also trying to sit up on her own and "talks" more.

And since no post would be complete without a picture, here we go! :)


Eating her toes is a new fun activity.



She loves to "sit up" and we keep letting her practice in safe places and we feel like she'll get it on her own soon!