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!

4 months old

Lucy is 4 months old today! She had her 4 month check up, and she was 13 lbs. 10 oz, and she is 25 1/4 inches long. Here's a picture of my beautiful (sleeping) growing girl.


And here's a picture of her swimming with her Aunt Kayla.


Nothing new on the medical side of things. We got an order today from our pediatrician that we have to take to Children's Healthcare to get Lucy's blood typed, so we know who will match with her.

Thanks to everyone for keeping up with us.

A date for the surgery

I got a call from Dr. Wrubel's surgery scheduler yesterday ... we have a date!

Barring any obstacles or changes, the surgery is set to take place on Friday, November 19th, at 7:30am at Children's Hospital of Atlanta at Egleston.

It feels great to finally have a date in my hand that is tangible. She said that we would need to do a lot of pre-op stuff around 14 days before the surgery. Once we know Lucy's blood type, we'll have to find people that are a match (we hope Wesley and I will be a match, but you never know) and we'll have to give blood that they can use in case she needs a transfusion during the surgery.

It means I'll spend my birthday (November 21st) in the hospital with her, but I can't think of a better birthday present than seeing my baby girl finally be done with surgery and on her way to recovery. It also means we'll be getting out of the hospital on or around Thanksgiving Day, but again ... we will have so many things to be thankful for this year!

I am also thinking that I would love to set up a system where people can sign up to pray for her in 15 minute increments the whole time she is supposed to be in surgery. I know that's a lot of 15 minute increments since the surgery will probably last 5-6 hours, but I think it would be awesome to know that people everywhere are praying for her the whole time she's in the operating room. I'll try to set that up closer to the date of the surgery.

Here she is at 3 months old ... she's getting so big and growing up so fast!

First visit with Dr. Wrubel

The visit today with Dr. Wrubel went very well! Wesley and I actually got to enjoy eating breakfast together at Einstein's Bagels because we got to the appt. so early. Lucy was a complete angel -- even though she hadn't eaten since 6:30 this morning. She got through the whole appointment without crying and I was able to feed her in the car before we went home.

Another nice thing was being in the waiting room and seeing a lot of other young couples with their babies who have other problems, too. We couldn't tell if any of the other babies had craniosynostosis (I think some of them might have) but everyone just seemed really positive and it helped me to remember again that we're not the only ones going through this.

We met with Dr. Wrubel's physician's assistant first, a really nice young lady. She just asked some preliminary questions and then we met with Dr. Wrubel. There wasn't a lot that we hadn't already talked about with Dr. Mackay. He said he was going to refer us to a pediatric opthamologist because Lucy's eyes are not exactly straight and they can kind of wander or not be looking in the same direction all the time. I asked him about the orbital advancement (the additional procedure where they move the bone around the eye sockets forward to compensate for how far back that part of her face is now). I didn't know how her eyes would look if they just moved the bone forward, but he explained that the lining around the eye sockets is attached to the bone so when they move the bone forward, the eye sockets will come along, too. He said that her eyes might look a little "funny" until everything has kind of grown into the right place, but then it should be okay.

I asked him about the possibility of having to go back in and do an additional orbital advancement or having to fill in the bone ... when the surgeons do the orbital advancement, they are making an educated guess about where to place the bone based on the child's facial growth and how they think it should look and where it should be. But I had heard recently from a lot of other parents whose children had that same procedure that almost all of them had to have a second surgery to put in bone or tissue to fill in the gaps where the bone did not grow like the surgeon thought it would. He said that it's about a 10% chance that she'll have to have another total orbital advancement and about 15-20% that they'll just have to go in and do some filling in for more cosmetic reasons. I'm praying it's going to be 0%. :)

He said that her head is really growing up a lot (he called it "towering"), and if that continues then they may have to reshape the back of her head, too, when they do the surgery. And he confirmed that the surgery would take place in November or December. Before we left, we met with his surgery scheduler and she asked us if we had any particular date that we wanted, or that we wanted to avoid (especially since it will be the holiday season!). We just told her the sooner the better! So if we're unavailable for Thanksgiving or Christmas this year, I'm sure everyone will understand why. :)

We probably won't see either doctor again until right before the surgery date, unless there is a reason for us to. I'll try to update this blog every month just with how things are progressing and add pictures of Lucy as she grows ... so everyone can be updated and for us to have a record of how she has changed.

Thank you to everyone who continues to support us, pray for us, send us sweet messages and encouraging Scriptures. You will never know how much it strengthens my heart and Wesley's heart to know that we're not doing this alone and that so many people care about us and about our treasure, Lucy. God is very powerful and His word never returns void, so we just continue to pray Scripture over her and we believe it to be true!

First visit with Dr. Mackay

Today was our follow up visit with Dr. Gregory Mackay, who does the reconstruction part of the surgery for Lucy's condition. We got there in plenty of time but we ended up having to wait for at least 40 minutes to see him. Why do doctors make you wait so long? I would even be okay if they were honest and said, "It's going to be 40 minutes before we can get you back there" because I would know that I had time to nurse her or change her diaper or whatever. Instead they leave you hanging and then you never know when they might come a'callin'. Oh well. That is totally unrelated to the visit and totally related to my pet peeves.

Dr. Mackay's PA saw us first and she took some pictures of Lucy's head from all different angles. Then Dr. Mackay came in and just talked to us for a while. He basically said what we already knew -- that the surgery would take place anywhere from 9-11 months old. He said they waited because the later they wait to do the surgery the less chance that she would have to have another surgery again. He was glad to hear that her genetic tests came back normal. What I think is a huge praise to God's healing in Lucy already is that he said she has a lot of midfacial retrusion and bicoronal craniosynostosis, both which are usually associated with a syndrome of some kind. But he said they can both also happen randomly, too, and it appears that in Lucy's case those two things are random (assuming the genetic test results are valid, and I am assuming they are!). But it just makes me really glad to know that she has two things that normally go along with another kind of syndrome, but she doesn't have a syndrome.

But because of the midfacial retrusion the surgery will be just a little bit more extensive than a normal craniosynostosis surgery. They will actually have to take the bone around her eye sockets and move it forward so it can match the growth of her forehead. He said he would almost overcompensate when he places the bone so for a while it will look funny until the rest of her face catches up with where it's supposed to be. But he said that it was pretty common to have to do that. He said she might have to have another surgery around her eyes when she is 7-9 years old, but that sure is a lot of time to pray and for God to answer our prayers that she won't have to have another surgery.

So the encouraging thing is that he was very reassuring -- he's been doing this since 1995, and he said he's never ever had a complication -- and he showed me a bunch of pictures of kids that he has done surgery on and they all look completely normal and you would never be able to tell they ever had anything wrong. He said that we would set a date soon for the surgery and it would probably be sometime in November or December unless Dr. Wrubel (the neurosurgeon) thought it wise to do it earlier based on her brain growth or swelling, etc. The part that's hard is that the surgery is a little more extensive and she might not look completely "normal" for a little while longer than we thought. Also, he made it sound like they would do the surgery and then it would be a lot of "wait and see" -- waiting to see how the bones in her skull fuse on their own, and if they don't they have to go back in and basically put in some artificial bone ... waiting to see if her head will conform to the shape they want it to be and if it doesn't they will have to go back in and do more surgery. So there are a lot of what if's, but I believe in a God that is in control of all the what if's and I trust that if He can form the entire world, He can certainly mold my baby's head to the correct shape (and even unfuse the sutures still if that is what He desires!).

Wesley was able to go with me and it was really nice to have him there, both emotionally and logistically (he can help carry all the stuff ... haha). I'm so glad I have such a strong and loving husband, not only just to go through life with but to go through trials with.

I'll end this post by saying that I've been reading a lot of blogs lately of other families whose children have conditions that are much more serious than anything Lucy has, and it has given me such a new outlook on my attitude. Yes, finding out that Lucy had craniosynostosis was a huge shock and it was emotional and hard and there are lots of emotions that I share in common with these other moms whose stories I am reading. But Lucy can have surgery and then it will be almost as though nothing was ever wrong. These other families are facing much more painful decisions -- like if their child will make it to her first birthday. It's amazing when I pray for them that my own problems pale in comparison and I am grateful for the smallest things that I have. It's also amazing to see their strength and humor and faith in the midst of these trials.

I joined a women's summer Bible study and it is going to be on the book of James. I started reading the first chapter to get prepared and this verse stood out to me and I will end this post with it:

"Consider it a sheer gift, friends, when tests and challenges come at you from all sides. You know that under pressure, your faith-life is forced into the open and shows its true colors. So don't try to get out of anything prematurely. Let it do its work so you become mature and well-developed, not deficient in any way." -- James 1:2-4, The Message

Great news!

I finally heard back from the geneticist today. This was after I left her three messages asking for our test results that were due. I guess it pays to be persistent sometimes.

They just tested her blood for mutations in the FGFR2 gene. Here's a little bit about that from Wikipedia (not that I get my medical information from Wiki, but you know it's helpful sometimes):

"Fibroblast growth factor receptor 2 (FGFR2) is a receptor for fibroblast growth factor encoded on a gene residing on chromosome 10. Mutations in this gene are associated with Crouzon syndrome, Pfeiffer syndrome, Craniosynostosis, Apert syndrome, Jackson-Weiss syndrome, Beare-Stevenson cutis gyrata syndrome, Saethre-Chotzen syndrome, and syndromic craniosynostosis."

Like I said previously, they were concerned that her craniosynostosis might be a result of a genetic mutation since we do have another family member who had it. But everyone in the hospital was pretty confident, just based on the way she looked and the lack of any other obvious symptoms, that there was no genetic mutation.

So, the geneticist finally called me back today (on the way to the mall!) and she said that the test results came back and they are normal!!!!! It wasn't a big shock to me, really, but it was comforting to know just the same.

She said that we can schedule an appointment and they can decide then what other tests they want to run, if we want them to. But Wesley and I both agree that there's really no need to run any more genetic tests. We're pretty sure that nothing else is wrong with her and it makes us feel better that doctors said the same thing. I don't want to put her through any unnecessary poking with needles if we don't have any suspicions.

That's great news!