I knew it had been awhile since I had posted, but wow....almost a month, unbelievable! Leah has grown and changed so much in such a short time. She turned 9 months on the 17th. She is now attempting to walk...actually took her first step on Thursday! Let go, one step and then down on her bottom. But hey, it was still a first step. It happened at my mom's house as my mom and I were both watching!
Leah now has 3 teeth and 2 more coming in. OH...THE BIGGEST NEWS....SHE STARTED SLEEPING THROUGH THE NIGHT!!! I MEAN THIS IS HUGE!! She'd never gone more than 4 hrs or so at a time before now. Her first night was Sunday, October 5th; so it will be 3 weeks tomorrow. She hasn't missed a night! And when I say sleep through the night, she is now going 11-12 hrs every single night!! Woo Hoo!! I am still trying to catch up on my sleep. Trying to get myself to bed earlier to get the benefit of a longer night sleep. She gets up every morning around 7am, which is a bit early for me. I got used to getting up with her between 3-5am, and then she would sleep until 8am.
She can wave...she does it when you wave at her or if you tell her to wave. And it is a cute "royal princess" wave. If you clap your hands or tell her pattycake, she will clap her hands together. She also will pat, pat something when you tell her pat, pat. Really out of all 3 of my girls, she seems to be doing everything much earlier, EVERYTHING. And the way she is trying to walk, I would not be surprised if she gets efficient before her first birthday. She is that determined. She does not sit still for a second. She can crawl and get across the room quickly. She is always underfoot....wants to be right in the action. There are times I have been convinced that her first word was, "Hi." If I say it to her, many times she says it back. So cute!! And she just LOVES her daddy! If she hears his voice, she starts looking for him and smiles when she sees him.
She has now been in her helmet for almost 5 complete months (on the 28th). Her head looks beautiful (other than where she has a slight protrusion on the side of her forehead...a dissolvable screw is dissolving). It is common for it to stick out while doing that. She technically only has another month in the helmet (Nov 28 will be 6 complete months). But I think she will be done with her helmet when she outgrows this one. Which probably only makes it an extra 2-3 weeks at most. Her head is slowing in growth, which is normal. My prediction is by mid December, she'll be out. A third helmet has never been brought up, but hubby and I are both in agreement that if it is left up to us and we are given an option, we will not be going into another helmet. Her head is as close to perfect as you're going to get.
We will be continuing to do the therapy at home 5x times a day until she is 2 yrs old for her Torticollis. We are also headed back to see her neurosurgeon (Dr. Heger) on November 24th for a routine follow-up appt.
I'll post some new pictures as soon as I get a chance! She is getting so much hair, and it is getting curly! When Ken sees her without her helmet, he always tells her that he wouldn't be able to pick her out of a line-up. LOL! We are that used to her in the helmet! We also had her dedication at church on October 11th. What a joyful time, and we are SO glad we are able to celebrate Leah's life and thank God for all He has done for our family! Leah (like our other girls) has a special plan to her life. "For I know the plans I have for you, declares the Lord. Plans to prosper you and not to harm you. Plans to give you a hope and a future." Jeremiah 29:11
Sunday, October 26, 2008
Sunday, September 28, 2008
Updated slideshow
I just added some new pictures to the slideshow below...pictures from the past 3.5 weeks. Leah is now 8 1/2 months old....I can't believe how fast time is flying! She is now ALL over the place. Perfecting her crawling and getting faster, pulling up ALL the time, practicing balancing herself (standing) without holding on etc.
In fact, at church last night they had to ask me her age. They were very surprised she was only 8 1/2 months. They move them up to the next room around 11 months. They were suggesting that she move up because that room is better equipped for babies that are moving. The room she is in is more for stationary babies they told me.
I'm going to wait....I'm not ready for her to move up. She's not ready either...that room is much more crowded (which means more germs!), and just because she is starting to move, I don't want her in there with babies that are skillful at walking and possibly clonking her on the head with toys. No....she's still a baby even if she is advancing a bit early. At this rate though she'll probably be walking sooner than later. It is becoming childproof central around here!
The new pictures I added: we took Leah swimming for the first time on Labor day. Don't know if being submersed startled her or if it was just too cold. But it took awhile for her to really enjoy herself. She just seemed unsure for awhile.
The last three photos were from yesterday...she pulls up on the coffee table (chest) all the time so I came up with the idea to cover it with a quilt. The chest has sharp corners, and also a metal latch in the front. So far this had been a great fix!! I knew those corner covers never stayed on with my other girls...plus this can be removed when we have people over. Now I am jumping up less to grab her and she has more freedom!
Did I share about the bottom tooth that popped in 3 weeks ago? We think the one next to it is coming in also.
GREAT NEWS.....Leah now only has to get her therapy every other week which means we can do away with the weekly drives to Ft. Lauderdale! We are back to every other week for therapy which can be done when we are there for the helmet adjustment appointments anyway! I still have to do the therapy with her 5 times a day here at home. But it will be nice to reclaim some of life back!! Those trips take up most of the day and we certainly have other things we'd rather be doing.
Leah also had yogurt for the first time this week. She really likes it and I mix fruit in with it.
Remember to leave us comments! Have a great week! I'll definately try to update here more often than I have been....things have just been super busy. We are preparing for Leah's dedication coming up in 2 weeks. We're definitely very excited about that.
In fact, at church last night they had to ask me her age. They were very surprised she was only 8 1/2 months. They move them up to the next room around 11 months. They were suggesting that she move up because that room is better equipped for babies that are moving. The room she is in is more for stationary babies they told me.
I'm going to wait....I'm not ready for her to move up. She's not ready either...that room is much more crowded (which means more germs!), and just because she is starting to move, I don't want her in there with babies that are skillful at walking and possibly clonking her on the head with toys. No....she's still a baby even if she is advancing a bit early. At this rate though she'll probably be walking sooner than later. It is becoming childproof central around here!
The new pictures I added: we took Leah swimming for the first time on Labor day. Don't know if being submersed startled her or if it was just too cold. But it took awhile for her to really enjoy herself. She just seemed unsure for awhile.
The last three photos were from yesterday...she pulls up on the coffee table (chest) all the time so I came up with the idea to cover it with a quilt. The chest has sharp corners, and also a metal latch in the front. So far this had been a great fix!! I knew those corner covers never stayed on with my other girls...plus this can be removed when we have people over. Now I am jumping up less to grab her and she has more freedom!
Did I share about the bottom tooth that popped in 3 weeks ago? We think the one next to it is coming in also.
GREAT NEWS.....Leah now only has to get her therapy every other week which means we can do away with the weekly drives to Ft. Lauderdale! We are back to every other week for therapy which can be done when we are there for the helmet adjustment appointments anyway! I still have to do the therapy with her 5 times a day here at home. But it will be nice to reclaim some of life back!! Those trips take up most of the day and we certainly have other things we'd rather be doing.
Leah also had yogurt for the first time this week. She really likes it and I mix fruit in with it.
Remember to leave us comments! Have a great week! I'll definately try to update here more often than I have been....things have just been super busy. We are preparing for Leah's dedication coming up in 2 weeks. We're definitely very excited about that.
Sunday, August 24, 2008
Thursday, August 14, 2008
Torticollis and Leah's Therapy
We went to Leah's first therapy appointment this past Tuesday. Her therapist is the same woman that does Leah's helmet adjustments every two weeks. We really like her and so does Leah.
Leah (like most babies) did not enjoy being held down for the exercises that were needed for her neck. There are 2 exercises that we need to do FIVE TIMES A DAY!! I was surprised as last week the assistant mentioned 3x a day. Every time we do the exercises we have to remove her helmet. We hold each exercise (stretch) for a count of 10-15 seconds and do 3 repetitions of that exercise. We repeat that 5x a day. At the end of the night she will have 40 minutes without her helmet instead of an hour since she will have it off periodically throughout the day.
Tuesday's appointment was the longest because the therapist was showing me how to do the exercises, as well as giving Leah other therapy as well. So for now we drive to Ft. Lauderdale every week, and hopefully in a month we will graduate to doing the therapy at the office every other week so we can get it down while we are there for her helmet anyway. Thankfully the therapy appears to be covered by the insurance!
Leah's next appt. will be next Tuesday (19th) for a helmet fitting. Her new (2nd) helmet should be in by then. We will be able to do her therapy while we are there.
Leah (like most babies) did not enjoy being held down for the exercises that were needed for her neck. There are 2 exercises that we need to do FIVE TIMES A DAY!! I was surprised as last week the assistant mentioned 3x a day. Every time we do the exercises we have to remove her helmet. We hold each exercise (stretch) for a count of 10-15 seconds and do 3 repetitions of that exercise. We repeat that 5x a day. At the end of the night she will have 40 minutes without her helmet instead of an hour since she will have it off periodically throughout the day.
Tuesday's appointment was the longest because the therapist was showing me how to do the exercises, as well as giving Leah other therapy as well. So for now we drive to Ft. Lauderdale every week, and hopefully in a month we will graduate to doing the therapy at the office every other week so we can get it down while we are there for her helmet anyway. Thankfully the therapy appears to be covered by the insurance!
Leah's next appt. will be next Tuesday (19th) for a helmet fitting. Her new (2nd) helmet should be in by then. We will be able to do her therapy while we are there.
Monday, August 11, 2008
Update
Sorry I haven't updated in awhile. We have been having a great summer! I can hardly believe Leah is almost 7 months old! She has been scooting around on her belly for almost a month now, aka "the army crawl." About 2 weeks ago she got up on her hands and knees and is learning to crawl. She is getting really good, but isn't really crawling yet.
Leah has been fussy a bit the past week or so. We think she is teething, but nothing has come through yet. She still isn't sleeping through the night, but at least when she wakes she is quick to go right back to sleep. I guess she is in the habit of night wakings. Some nights only twice (once while I'm asleep), and other nights up to 5 times. My oldest daughter Sarah says, "Mom, one day you'll sleep again."
In Cranio News:
Leah had a helmet appt. last week. She has been in her helmet a little over 2 months, and they wanted to rescan (measure) her head to see the progress she has made. There has been A LOT of progress! It was amazing to see the difference in a computerized scan.
We met with Leah's plastic surgeon, Dr. Stelnicki, for the first time since she has been wearing a helmet. He was very pleased with how symmetrical her face looks especially her eyes. He said they are completely even. Though she has made a lot of progress, it was evident to all of us that she would need one more helmet to finish rounding out her head. Since she has almost outgrown this helmet, another helmet has been ordered for her. We will get it next week.
We also found out that Leah has a mild case of Torticollis. Basically it means that one neck muscle is slightly longer than the other, which means she favors one side over the other. We have never noticed it before, so it must be really mild. Nevertheless it still needs to be addressed, so she will start therapy tomorrow and will have to go weekly for the first month. After that we hope to only have to go every other week while we are there for her helmet appt since it is over an hour away. Tomorrow they will teach me exercises to do with her. I will have to do the exercises 3 times a day with her. In all my spare time....haha!
I'll post pictures soon. It's amazing how much she's grown. She is really long, and weighs around 15 lbs. Leah really is a happy baby, and we all get so much enjoyment out of her.
Leah has been fussy a bit the past week or so. We think she is teething, but nothing has come through yet. She still isn't sleeping through the night, but at least when she wakes she is quick to go right back to sleep. I guess she is in the habit of night wakings. Some nights only twice (once while I'm asleep), and other nights up to 5 times. My oldest daughter Sarah says, "Mom, one day you'll sleep again."
In Cranio News:
Leah had a helmet appt. last week. She has been in her helmet a little over 2 months, and they wanted to rescan (measure) her head to see the progress she has made. There has been A LOT of progress! It was amazing to see the difference in a computerized scan.
We met with Leah's plastic surgeon, Dr. Stelnicki, for the first time since she has been wearing a helmet. He was very pleased with how symmetrical her face looks especially her eyes. He said they are completely even. Though she has made a lot of progress, it was evident to all of us that she would need one more helmet to finish rounding out her head. Since she has almost outgrown this helmet, another helmet has been ordered for her. We will get it next week.
We also found out that Leah has a mild case of Torticollis. Basically it means that one neck muscle is slightly longer than the other, which means she favors one side over the other. We have never noticed it before, so it must be really mild. Nevertheless it still needs to be addressed, so she will start therapy tomorrow and will have to go weekly for the first month. After that we hope to only have to go every other week while we are there for her helmet appt since it is over an hour away. Tomorrow they will teach me exercises to do with her. I will have to do the exercises 3 times a day with her. In all my spare time....haha!
I'll post pictures soon. It's amazing how much she's grown. She is really long, and weighs around 15 lbs. Leah really is a happy baby, and we all get so much enjoyment out of her.
Sunday, June 29, 2008
Monday, June 23, 2008
Almost a month in her helmet!
Leah is growing up so fast!! She was 5 months old on June 17th. She rolls a lot and manages to scoot fairly well. In no time, it seems she will be "moving." We are not ready for that!
She still doesn't seem to mind her helmet. During bathtime she grabs at the water. Today she discovered her feet for the first time! She was waking up a lot at night a couple weeks ago, and I finally realized maybe it was time to start solids. Leah started with organic rice cereal June 4th. A few days later she had her first fruit...bananas. She liked the bananas a lot better than the rice cereal. Since then she's also had pears, sweet potatoes and apples. I've made some of her food, but we are also giving her Gerber organic. She is now eating 2 meals a day of solids in addition to nursing. She is only waking up once between 11:30pm and morning (which varies btwn 6:40 and 7:30am). This is a HUGE blessing!!! I am finally getting a few solid chunks of sleep.
I was reflecting the other day at how well Leah is doing. The first 3 months of her life she was a very fussy baby that needed to be held a lot. Though the cat scan showed no ICP (intracranial pressure), one wonders if her happy temperament now is because she has had the surgery or just developmental (the passing of time...getting older, etc). Leah likes attention...sure...but she is just as happy hanging out in her exersaucer or on her playmat. She is a very happy, easy-going baby...all smiles...everyone notices and comments. Whatever the reason...it sure is a welcome change! Life is definitely easier with a baby that doesn't need to be held 24/7.
She still doesn't seem to mind her helmet. During bathtime she grabs at the water. Today she discovered her feet for the first time! She was waking up a lot at night a couple weeks ago, and I finally realized maybe it was time to start solids. Leah started with organic rice cereal June 4th. A few days later she had her first fruit...bananas. She liked the bananas a lot better than the rice cereal. Since then she's also had pears, sweet potatoes and apples. I've made some of her food, but we are also giving her Gerber organic. She is now eating 2 meals a day of solids in addition to nursing. She is only waking up once between 11:30pm and morning (which varies btwn 6:40 and 7:30am). This is a HUGE blessing!!! I am finally getting a few solid chunks of sleep.
I was reflecting the other day at how well Leah is doing. The first 3 months of her life she was a very fussy baby that needed to be held a lot. Though the cat scan showed no ICP (intracranial pressure), one wonders if her happy temperament now is because she has had the surgery or just developmental (the passing of time...getting older, etc). Leah likes attention...sure...but she is just as happy hanging out in her exersaucer or on her playmat. She is a very happy, easy-going baby...all smiles...everyone notices and comments. Whatever the reason...it sure is a welcome change! Life is definitely easier with a baby that doesn't need to be held 24/7.
Wednesday, May 28, 2008
Leah got her helmet!!
I am late getting this posted, but I adjusted the date to show the date she actually got her helmet (May 28). As of today (June 7), she has been in her helmet 10 days and has actually already had an adjustment appt. since then (yesterday). Leah has adjusted to her helmet well....no issues whatsoever....which is a HUGE blessing!! She doesn't seem to notice when it has to come on or off. Leah has to wear her helmet for the next 3-6 months for 23 hours a day. She sleeps in it and takes all her naps in it. Some have worried how that must feel for her, but her therapist showed us the soft foam lining inside her helmet that cushions her head. Honestly, Leah really doesn't seem to know she has it on...I am surprised myself!
I went to Michael's to get stickers to decorate her helmet. I'll include some pictures of Leah in her new helmet. The stickers came off after a few days even though I used the tip of painting over them with clear nail polish. I have to get some more and redo her helmet.
Everyday Leah gets an hour break from her helmet. I take it off for about 40 minutes sometime in the late afternoon and clean it with alcohol and set it in front of a fan to dry. I make sure to get a lot of snuggle time in with her sweet little noggin during this time. Then at night, Leah gets another 20 minute break while I give her a bath. Leah sure does love her bath time! She seems mesmerized by the water and smiles a lot! Leah is 4 months old in these photos.
Leah right after she got her helmet
Leah happy in her helmet!
Leah in her decorated helmet - she LOVES her thumb!
I went to Michael's to get stickers to decorate her helmet. I'll include some pictures of Leah in her new helmet. The stickers came off after a few days even though I used the tip of painting over them with clear nail polish. I have to get some more and redo her helmet.
Everyday Leah gets an hour break from her helmet. I take it off for about 40 minutes sometime in the late afternoon and clean it with alcohol and set it in front of a fan to dry. I make sure to get a lot of snuggle time in with her sweet little noggin during this time. Then at night, Leah gets another 20 minute break while I give her a bath. Leah sure does love her bath time! She seems mesmerized by the water and smiles a lot! Leah is 4 months old in these photos.
Leah right after she got her helmet
Leah happy in her helmet!
Leah in her decorated helmet - she LOVES her thumb!
Sunday, May 18, 2008
One Month Post Op!!!
Wow....sorry I haven't updated in awhile! It is unbelievable how fast time is flying now. We are back to living a "normal" life and I was in shock when I realized this past Wednesday that we are now ONE MONTH post op!! I am SO glad surgery is behind us!Leah's scars have completely healed. Obviously you can still see them, but all her stitches are gone now...the last bit came off yesterday.
I have been meaning to post about Leah's post op appts from May 5th and May 6th. Plus, I took pictures of her with both her surgeons at those appts. If I don't get a chance now hopefully I will soon. Leah is napping and once she wakes up I won't be back online for a bit. Then LIFE will swallow us up again. We've had so many other things crop up this past week or two:
1) Our a/c broke a week ago this past Friday. We were blessed to have it attended to and fixed within a few hours by a friend of Ken's from his Bible study!!
2) Our kitchen faucet is leaking (barely a year old) and we discovered it was leaking below the sink. I've called and they are sending a new one free of charge (of course), and Ken will replace it when it gets here. In the meantime, at least he was able to rig it so we could still use it without it leaking. Otherwise, no running water in the kitchen and that really would be a pain.
3) I had an ear infection which never happens and had to fit in a doctor appt for me (in our already busy schedule). It was very painful. And it came after a cold that I had for a few days with full blown symptoms. I felt horrible! I am usually quite healthy.
4) Ken had to fix our slide out trash can cabinet. He's become quite the handyman!
5) A full day we couldn't get our computer to boot up. Thankfully, my mom was able to get it working.....THANKS Mom!!
6) Ken was out of town for 4 days last week and will be traveling again tomorrow for an overnight trip.
7) They called to reschedule Leah's helmet appt. It was supposed to be this coming Thursday May 22 and because they are relocating their office Leah won't get her helmet until Wed. May 28th. We'll be driving to Ft. Lauderdale instead of Hollywood. I was completely bummed about this because the sooner we get her in the helmet, the sooner she gets out. Now we are delayed a full 6 days!
In addition to these things we've had normal life:
The girls finished up their AWANA year and we are finishing up our 2nd year with our Keepers group (similar to Girls Scouts) this Tuesday with our end of the year Tea Party. Sarah will be awarded with the pins (badges) she's earned for the year: candle making, soap making, counted cross stitch, latch hooking, first aid, watercolors, sign language, and a couple more I can't think of at the moment.
We signed Sarah up for a 4 week writing class with a published author. She is enjoying it.
Well Leah is up....I'll post about her appointments soon! Hope all is well with everyone! Drop us a comment if you have the time.
I have been meaning to post about Leah's post op appts from May 5th and May 6th. Plus, I took pictures of her with both her surgeons at those appts. If I don't get a chance now hopefully I will soon. Leah is napping and once she wakes up I won't be back online for a bit. Then LIFE will swallow us up again. We've had so many other things crop up this past week or two:
1) Our a/c broke a week ago this past Friday. We were blessed to have it attended to and fixed within a few hours by a friend of Ken's from his Bible study!!
2) Our kitchen faucet is leaking (barely a year old) and we discovered it was leaking below the sink. I've called and they are sending a new one free of charge (of course), and Ken will replace it when it gets here. In the meantime, at least he was able to rig it so we could still use it without it leaking. Otherwise, no running water in the kitchen and that really would be a pain.
3) I had an ear infection which never happens and had to fit in a doctor appt for me (in our already busy schedule). It was very painful. And it came after a cold that I had for a few days with full blown symptoms. I felt horrible! I am usually quite healthy.
4) Ken had to fix our slide out trash can cabinet. He's become quite the handyman!
5) A full day we couldn't get our computer to boot up. Thankfully, my mom was able to get it working.....THANKS Mom!!
6) Ken was out of town for 4 days last week and will be traveling again tomorrow for an overnight trip.
7) They called to reschedule Leah's helmet appt. It was supposed to be this coming Thursday May 22 and because they are relocating their office Leah won't get her helmet until Wed. May 28th. We'll be driving to Ft. Lauderdale instead of Hollywood. I was completely bummed about this because the sooner we get her in the helmet, the sooner she gets out. Now we are delayed a full 6 days!
In addition to these things we've had normal life:
The girls finished up their AWANA year and we are finishing up our 2nd year with our Keepers group (similar to Girls Scouts) this Tuesday with our end of the year Tea Party. Sarah will be awarded with the pins (badges) she's earned for the year: candle making, soap making, counted cross stitch, latch hooking, first aid, watercolors, sign language, and a couple more I can't think of at the moment.
We signed Sarah up for a 4 week writing class with a published author. She is enjoying it.
Well Leah is up....I'll post about her appointments soon! Hope all is well with everyone! Drop us a comment if you have the time.
Monday, May 5, 2008
Slideshow Updated!!
I couldn't resist...I have been wanting to get it done. I've updated Leah's surgery slideshow below. Now the pictures go all the way until she gets home. The song will end before the slideshow has ended...you can scroll down to the bottom and restart the song. I haven't figured out a better way to do it.
Sunday, May 4, 2008
Time is really flying now.....
Wow! I can't believe we are almost 3 weeks post op (tomorrow)....it is unreal. I have been meaning to update for some time now. The first couple weeks home Leah's sleep patterns were all out of whack. She is doing much better with that now! The surgery seems like a lifetime ago and her scars are already looking so much better.
We are seeing her doctors this week...tomorrow we have an 11:15am appt with her neurosurgeon, Dr. Heger, for a post op check. Then on Tuesday we have a 3pm appt with her plastic surgeon, Dr. Stelnicki. I am pretty sure she will be getting her head measured for her helmet. He said once they take the measurements...it is all computerized and her helmet will be ready in 7-10 days. I can't really picture her wearing the helmet and dealing with it since we were so focused on the surgery. Hopefully she is still young enough that she won't mind wearing it. We were told she would be wearing it for 3-6 months...it is an orthotic device to help shape and mold her head. I'll post pics when she gets it!
Leah is ALL smiles these days and starting to laugh more. She's 3 1/2 months now and really getting more and more interested in the world around her. She smiles at us all the time. I will post some recent pictures soon. I am also going to update her slideshow so that it takes you all the way through to recovery pictures....just a matter of finding the time.
Sometimes I feel like I walk around in a "dream", a dream that the surgery is now behind us...it is a wonderful feeling and one that I don't ever want to forget. At a most trying time in my life....God showed up in a huge and powerful way....He walked beside me and took over in moments I felt weak and couldn't do it. I've had people tell me they could never go through what we've been through with Leah's surgery...that it is unimaginable to them. I've told them it is God that took me through it. When we are at our weakest, He is at his strongest. His power and courage and strength worked through me and in me and as a result I feel loved, blessed and amazed at His love for me!!
*I added in a post entitled "Day 3 Post op" below the slideshow in order to better preserve our memories of the week.
We are seeing her doctors this week...tomorrow we have an 11:15am appt with her neurosurgeon, Dr. Heger, for a post op check. Then on Tuesday we have a 3pm appt with her plastic surgeon, Dr. Stelnicki. I am pretty sure she will be getting her head measured for her helmet. He said once they take the measurements...it is all computerized and her helmet will be ready in 7-10 days. I can't really picture her wearing the helmet and dealing with it since we were so focused on the surgery. Hopefully she is still young enough that she won't mind wearing it. We were told she would be wearing it for 3-6 months...it is an orthotic device to help shape and mold her head. I'll post pics when she gets it!
Leah is ALL smiles these days and starting to laugh more. She's 3 1/2 months now and really getting more and more interested in the world around her. She smiles at us all the time. I will post some recent pictures soon. I am also going to update her slideshow so that it takes you all the way through to recovery pictures....just a matter of finding the time.
Sometimes I feel like I walk around in a "dream", a dream that the surgery is now behind us...it is a wonderful feeling and one that I don't ever want to forget. At a most trying time in my life....God showed up in a huge and powerful way....He walked beside me and took over in moments I felt weak and couldn't do it. I've had people tell me they could never go through what we've been through with Leah's surgery...that it is unimaginable to them. I've told them it is God that took me through it. When we are at our weakest, He is at his strongest. His power and courage and strength worked through me and in me and as a result I feel loved, blessed and amazed at His love for me!!
*I added in a post entitled "Day 3 Post op" below the slideshow in order to better preserve our memories of the week.
Sunday, April 20, 2008
We're Home!!
Sorry I haven't updated before now but things have really been busy. Leah was discharged from the hospital Friday! I smiled all the way home!! It is still unbelievable to me that we are on the other side of her surgery! She's doing really well but her sleep schedule is all mixed up. She barely got any sleep at all today and is overtired! In fact, she is sitting in my lap right now; wide awake at 12:30am!
As you can see in her new avatar picture (small picture in the top right corner) her swelling has come down a lot and she is feeling much better. That picture was taken today! I plan on adding the rest of her hospital details and adding more pictures to her slideshow when time permits. Please pray Leah starts sleeping better soon...I am exhausted!
As you can see in her new avatar picture (small picture in the top right corner) her swelling has come down a lot and she is feeling much better. That picture was taken today! I plan on adding the rest of her hospital details and adding more pictures to her slideshow when time permits. Please pray Leah starts sleeping better soon...I am exhausted!
Thursday, April 17, 2008
Day 3 Post op
adding this in for a more detailed account of our hospital stay:
Thursday April 17, 2008
Leah will be going home tomorrow!! She had a really good day today. Her eyes have opened up (her left one really wide). Dr. Stelnicki came by this afternoon and he said that when their eyes open it is a sign that everything is back to "normal" on the inside! Dr. Heger, our neurosurgeon likes to discharge from the picu....the spike in her low grade fever turned out to be a blessing in disguise....we have been able to stay in our private room and not have to move to the regular ward at all.
Her fever subsided last night and never came back today. She is now only on regular tylenol for pain "as needed" and hasn't needed it all day. We gave her a dose tonight when she was going to bed. Her appetite has really increased now that she is done with the narcotics. She nursed really well today. She had 3 bowel movements (which you know is a good sign after any surgery) and many wet diapers. She got the drainage catheter out of her head today and one of her IVs out. Now she just has a heplocked IV in her arm, the oxygen monitor on her toe, and the leads on her chest.
She seems back to herself today with regular active periods again, kicking her legs and trying to coo and "talk" to us, very active...as much as a 3 month old can be. And she is 3 months old today!! When she is awake awhile she gets fussy signaling she is tired. We are feeling SO blessed to have our sweet Leah back!! She has been through a lot this week but bounced back as quickly as they say babies do. It sure is a miracle of God!! I am just so relieved to be on the other side and now having the surgery behind us and our little girl here is just more incredible than words can express!! God is SO good!!
Yesterday both eyes were swelled shut and we were monitoring a low grade fever hoping it didn't spike back up and today she is well enough to go home with both eyes opening (and open tonight). Her neurosurgeon just wanted to keep her in the additional 24 hrs for monitoring to make sure she really was on the mend. They sure take great care of their children and even the parents here at the Joe DiMaggio Childrens Hospital!! Leah has received wonderful love and care!!
The girls have had such a great time with my mom this week!!! They did all kinds of special and fun things together and were totally "spoiled" while we were gone. Though they will be happy to see us I know they will be sad when their adventures with Grandma end this week. It was so nice that they received such great care and I didn't have to worry one bit about them. We sure did miss them though and it will be great to be home all together again tomorrow!! I know they also missed their baby sister.
Thanks again for all your love and prayers....Ken and I have had amazing strength and stamina this week and we know it is due to all the prayers said on our behalf. We are eternally grateful!!
Thursday April 17, 2008
Leah will be going home tomorrow!! She had a really good day today. Her eyes have opened up (her left one really wide). Dr. Stelnicki came by this afternoon and he said that when their eyes open it is a sign that everything is back to "normal" on the inside! Dr. Heger, our neurosurgeon likes to discharge from the picu....the spike in her low grade fever turned out to be a blessing in disguise....we have been able to stay in our private room and not have to move to the regular ward at all.
Her fever subsided last night and never came back today. She is now only on regular tylenol for pain "as needed" and hasn't needed it all day. We gave her a dose tonight when she was going to bed. Her appetite has really increased now that she is done with the narcotics. She nursed really well today. She had 3 bowel movements (which you know is a good sign after any surgery) and many wet diapers. She got the drainage catheter out of her head today and one of her IVs out. Now she just has a heplocked IV in her arm, the oxygen monitor on her toe, and the leads on her chest.
She seems back to herself today with regular active periods again, kicking her legs and trying to coo and "talk" to us, very active...as much as a 3 month old can be. And she is 3 months old today!! When she is awake awhile she gets fussy signaling she is tired. We are feeling SO blessed to have our sweet Leah back!! She has been through a lot this week but bounced back as quickly as they say babies do. It sure is a miracle of God!! I am just so relieved to be on the other side and now having the surgery behind us and our little girl here is just more incredible than words can express!! God is SO good!!
Yesterday both eyes were swelled shut and we were monitoring a low grade fever hoping it didn't spike back up and today she is well enough to go home with both eyes opening (and open tonight). Her neurosurgeon just wanted to keep her in the additional 24 hrs for monitoring to make sure she really was on the mend. They sure take great care of their children and even the parents here at the Joe DiMaggio Childrens Hospital!! Leah has received wonderful love and care!!
The girls have had such a great time with my mom this week!!! They did all kinds of special and fun things together and were totally "spoiled" while we were gone. Though they will be happy to see us I know they will be sad when their adventures with Grandma end this week. It was so nice that they received such great care and I didn't have to worry one bit about them. We sure did miss them though and it will be great to be home all together again tomorrow!! I know they also missed their baby sister.
Thanks again for all your love and prayers....Ken and I have had amazing strength and stamina this week and we know it is due to all the prayers said on our behalf. We are eternally grateful!!
Wednesday, April 16, 2008
Day 2 Post Op
I didn't have a chance to update the blog yesterday as things were very busy. I did manage to create a gmail account and email some of you. I also uploaded pictures to the laptop and resized them for email. I had intended to have everyone's email address with me but because I have not been able to log into bellsouth I haven't been able to retrieve them all. If you didn't get an email from us we will be able to once we get home which will either be today or tomorrow. The details that follow are what I sent in the email yesterday. I will then be posting updates today and hopefully pictures of Leah.
Leah developed a fever last night (Tuesday night) which I have been told is common with surgery and doesn't necessarily mean she has an infection. Nevertheless they are ruling it out. They took blood today and are doing a blood culture to check for infection. We'll find out that tomorrow. They took a urine sample. And they did a chest x-ray to see if her lungs were clear. Her neurosurgeon came by this morning to check on her. He told me she has a little bit of bruising on her brain but he did not seem concerned at all. He wants to keep her in picu as he likes to discharge his patients directly from picu so hopefully we will stay in here the duration. Because of her fever she may stay in here until Friday (originally we were told probably Thursday but as you know there are no guarantees with hospital stays).
Leah is keeping down food which is breastmilk or pedialyte for her. She has an appetite and I have been able to nurse her once yesterday and once today. Other feedings have been by bottle since that doesn't involve moving her out of the crib. I held her for 45 min today and will again later. Ken probably will too. The nurse just came in and Leah's temperature this afternoon now that the tylenol has worn off is "low-grade" so they will not be giving her any more pain meds until she starts to become inconsolable (if she does). Her last dosage of tylenol 3 was at 10:30am so she was due for another at 2:30pm...it is now almost 4pm and she is sleeping comfortably!!! So that is a praise!
She is on antibiotics every 6 hrs (strong ones) as a preventative. They anticipate taking out her drainage catheter (from her head) tomorrow morning.
Thanks again for all your prayers and support! I'd love to hear from you when you get a chance. I'll also be updating Leah's blog later and probably posting a few pictures there when time permits. Hope you enjoy the pictures...the swelling is completely normal but she sure looks pitiful!! Don't forget to add your comments to Leah's blog. She'll enjoy reading them in her scrapbook someday!!
Leah developed a fever last night (Tuesday night) which I have been told is common with surgery and doesn't necessarily mean she has an infection. Nevertheless they are ruling it out. They took blood today and are doing a blood culture to check for infection. We'll find out that tomorrow. They took a urine sample. And they did a chest x-ray to see if her lungs were clear. Her neurosurgeon came by this morning to check on her. He told me she has a little bit of bruising on her brain but he did not seem concerned at all. He wants to keep her in picu as he likes to discharge his patients directly from picu so hopefully we will stay in here the duration. Because of her fever she may stay in here until Friday (originally we were told probably Thursday but as you know there are no guarantees with hospital stays).
Leah is keeping down food which is breastmilk or pedialyte for her. She has an appetite and I have been able to nurse her once yesterday and once today. Other feedings have been by bottle since that doesn't involve moving her out of the crib. I held her for 45 min today and will again later. Ken probably will too. The nurse just came in and Leah's temperature this afternoon now that the tylenol has worn off is "low-grade" so they will not be giving her any more pain meds until she starts to become inconsolable (if she does). Her last dosage of tylenol 3 was at 10:30am so she was due for another at 2:30pm...it is now almost 4pm and she is sleeping comfortably!!! So that is a praise!
She is on antibiotics every 6 hrs (strong ones) as a preventative. They anticipate taking out her drainage catheter (from her head) tomorrow morning.
Thanks again for all your prayers and support! I'd love to hear from you when you get a chance. I'll also be updating Leah's blog later and probably posting a few pictures there when time permits. Hope you enjoy the pictures...the swelling is completely normal but she sure looks pitiful!! Don't forget to add your comments to Leah's blog. She'll enjoy reading them in her scrapbook someday!!
Tuesday, April 15, 2008
Day 1 Post-Op
Thank you everyone for your love and prayers!! It has been SO nice reading your comments on Leah's blog. I have not been able to log into my email account like I normally can and I'm not sure what the issue is. So it has been a blessing and comfort to us to know you all are thinking and praying for us!
We had an amazing night last night!! Leah slept so peacefully even though the nurses were in here checking on her every hour. She is eating regularly (breastmilk from bottle) and keeping it down. She has been sleeping a lot today also. They heplocked her IVs (she has 2...one in her arm and one in her foot). Her catheter came out this morning so we are changing diapers again. We also did some incision care today. As each line comes out we are one step closer to going home.
Her surgeons came by this morning to check on her. Her vitals are good, her blood counts normal and the surgeons and nurses are VERY pleased with Leah's recovery so far. She is probably well enough to move out of picu, but our surgeon said as long as they don't need this room we will probably get to stay here again tonight. It would be nice if that were the case because I had a good nights sleep here last night...the first one in a long time. The nurse was quiet when she came in every hour and even did Leah's feeding while I slept. I didn't even hear her! So I had the first 5 hour stretch of sleep since before she was born. I am usually up with her about once a night. I hear it is best to get a good sleep the first night as tonight she may be much more awake.
We will be able to hold Leah today. Actually they were encouraging us to hold her yesterday but I really didn't want her jostled about. She knows we are here...hears our voices and feels our touch....but I know right now the best thing for her is to sleep and be comfortable. That way she won't feel as much pain.
Her surgeon ordered a cat scan to serve as a baseline. This will help for the months come as she is wearing her helmet. They will have a comparison. Her head already looks great...like a normal forehead but she IS swelling today. Her right eye more swollen than her left and may be almost closed. I have heard the swelling gets worse 2 days post op so it will be interesting to see her tonight and tomorrow. I will post pictures eventually but not sure if I will be able to get to that while we are still here. Leah will start to be more awake and active in these next few days.
Again...THANK YOU!!! We are so grateful to have such caring friends and family. Your prayers have been felt and we are experiencing abundant blessings from God as this week unfolds!
We had an amazing night last night!! Leah slept so peacefully even though the nurses were in here checking on her every hour. She is eating regularly (breastmilk from bottle) and keeping it down. She has been sleeping a lot today also. They heplocked her IVs (she has 2...one in her arm and one in her foot). Her catheter came out this morning so we are changing diapers again. We also did some incision care today. As each line comes out we are one step closer to going home.
Her surgeons came by this morning to check on her. Her vitals are good, her blood counts normal and the surgeons and nurses are VERY pleased with Leah's recovery so far. She is probably well enough to move out of picu, but our surgeon said as long as they don't need this room we will probably get to stay here again tonight. It would be nice if that were the case because I had a good nights sleep here last night...the first one in a long time. The nurse was quiet when she came in every hour and even did Leah's feeding while I slept. I didn't even hear her! So I had the first 5 hour stretch of sleep since before she was born. I am usually up with her about once a night. I hear it is best to get a good sleep the first night as tonight she may be much more awake.
We will be able to hold Leah today. Actually they were encouraging us to hold her yesterday but I really didn't want her jostled about. She knows we are here...hears our voices and feels our touch....but I know right now the best thing for her is to sleep and be comfortable. That way she won't feel as much pain.
Her surgeon ordered a cat scan to serve as a baseline. This will help for the months come as she is wearing her helmet. They will have a comparison. Her head already looks great...like a normal forehead but she IS swelling today. Her right eye more swollen than her left and may be almost closed. I have heard the swelling gets worse 2 days post op so it will be interesting to see her tonight and tomorrow. I will post pictures eventually but not sure if I will be able to get to that while we are still here. Leah will start to be more awake and active in these next few days.
Again...THANK YOU!!! We are so grateful to have such caring friends and family. Your prayers have been felt and we are experiencing abundant blessings from God as this week unfolds!
Monday, April 14, 2008
Leah's surgery update!!
Will post more details later but just wanted to thank everyone for your love, support and prayers......LEAH IS SUCCESSFULLY ON THE OTHER SIDE OF HER SURGERY as they say on my "Cranio" message board (online cranio support group) !!!!!!!!!!!!!!!
The surgery went really well. Leah lost 40 ccs of blood and did require a transfusion which is normal. She is doing really well tonight. They already removed her arterial line this evening and they will probably remove the drainage catheter tomorrow along with the catheter. She is in the picu (pediatric intensive care unit) which is again "common" for this surgery. Her pain is being managed with morphine and tylenol with codeine 3 which has kept her sleeping peacefully this evening. She had a bit of pain this afternoon while they figured out how much pain medication she needed.
She already kept down a 2 ounce bottle of pedialyte for a couple hrs which meant we then gave her breastmilk out of a bottle. She kept that down also!! That is great since the anesthesia and/or morphine can cause naseau and vomiting which she has had none of!
Her head is wrapped in a turban but we have already seen her 2 incisions and her forehead is flat now (no bulge or dent). The helmet will finish the reshaping.
We weren't able to get a cell phone or internet connection today during surgery so we are sorry we weren't able to update sooner. We are able to get both connections from the picu room!
Going to bed now as I have been up since 3am!! Leah and I did not get much sleep last night...she must have known something was up or maybe because we weren't at home in her regular bed. We are SO happy that Leah's surgery is behind her and we will try to update daily and eventually post pictures of Leah. We were blessed with a visit from our pastor today even though we are an hour from home. God sure has been good to us even down to the tiniest details of today! We praise Him and thank Him for Leah's successful surgery!!!
The surgery went really well. Leah lost 40 ccs of blood and did require a transfusion which is normal. She is doing really well tonight. They already removed her arterial line this evening and they will probably remove the drainage catheter tomorrow along with the catheter. She is in the picu (pediatric intensive care unit) which is again "common" for this surgery. Her pain is being managed with morphine and tylenol with codeine 3 which has kept her sleeping peacefully this evening. She had a bit of pain this afternoon while they figured out how much pain medication she needed.
She already kept down a 2 ounce bottle of pedialyte for a couple hrs which meant we then gave her breastmilk out of a bottle. She kept that down also!! That is great since the anesthesia and/or morphine can cause naseau and vomiting which she has had none of!
Her head is wrapped in a turban but we have already seen her 2 incisions and her forehead is flat now (no bulge or dent). The helmet will finish the reshaping.
We weren't able to get a cell phone or internet connection today during surgery so we are sorry we weren't able to update sooner. We are able to get both connections from the picu room!
Going to bed now as I have been up since 3am!! Leah and I did not get much sleep last night...she must have known something was up or maybe because we weren't at home in her regular bed. We are SO happy that Leah's surgery is behind her and we will try to update daily and eventually post pictures of Leah. We were blessed with a visit from our pastor today even though we are an hour from home. God sure has been good to us even down to the tiniest details of today! We praise Him and thank Him for Leah's successful surgery!!!
Saturday, April 12, 2008
Surgery Day Details
Yesterday and today I was on the phone with the hospital. Everything is a "go" for Leah's surgery. We have preauthorization from our insurance for her surgery. We are preregistered at the hospital. And today we heard from hospital billing and another call to give us our pre-op instructions. Billing was calling us to let us know how much we had left to pay of our deductible and that after that we are responsible for 20% (which we knew). We will be receiving a bill a couple weeks after the surgery and they said we could make payments.
Pre-op instructions are as follows: No breastmilk after 3:30am Monday morning. Leah can have water or pedialyte between 3:30-5:30 if we need to and nothing after 5:30am. We have to be at the hospital at 5:45am to check in. At this point we don't know if they will be doing bloodwork that morning before the surgery but there were no instructions from the surgeons for that. She said a lot of times with healthy babies they just draw that during "prep." I guess that makes better sense because by then they will be under and not feel the stick of the needles. I am thankful so far that she has not had to have any pre-op visits for labs/bloodwork.
We will be in a "holding" area with her. We will be able to stay with her until surgery time at 7:30am. Nurses will be available for questions and right before the surgery at 7:30 the surgeons and anesthesiologist will come in for any questions we may have. I am thankful Leah is the first surgery Monday morning....we won't have too long to wait with her being hungry...and we may be able to keep her asleep. She sleeps well that time of morning.
Our surgeons will be fresh off of a weekend and our plastic surgeon just came back from vacation. That is kind of nice.
So we'll drive down Sunday afternoon...get settled in the Conine Clubhouse....grab some dinner and try to get to bed EARLY!! I am not sure how much sleep we will get but Leah usually sleeps well between 9-1 or 2 so I should take advantage of that time frame though I am not normally able to go to sleep that early. I will wake to feed her her last feeding around 3pm and hopefully she will go back to sleep right away like she normally does (though she hasn't the past 2 nights!!). I am praying she will sleep well these next 3 nights so that I can get caught up on some sleep before next week.
We also found out today that though the PICU rooms are private that the regular pediatric rooms are NOT! They said sometimes if they are not busy they will keep the babies in the PICU for the rest of their stay. They put a request in for me for a private room since I am nursing but there are no guarantees. Pray that we are able to stay in a private room for the duration because this thing is stressful enough without worrying about Leah's crying keeping another family awake or them keeping us awake. We've always had private hospital rooms for all my births and when I've stayed in the hospital with Rebecca for a week when she was 2 months old. I really can't imagine how hard it would be caring for Leah and not having privacy...privacy to nurse, pump, sleep etc.
Tomorrow we have a lot of loose ends to tie up...cleaning, laundry, packing, paying bills, etc. I pray Leah takes better naps so we get it all done.
Remember to leave your comments for us....we LOVE hearing from you and will be printing these out for Leah's scrapbook! Or drop us an email. THANKS again for all your love and support.
Pre-op instructions are as follows: No breastmilk after 3:30am Monday morning. Leah can have water or pedialyte between 3:30-5:30 if we need to and nothing after 5:30am. We have to be at the hospital at 5:45am to check in. At this point we don't know if they will be doing bloodwork that morning before the surgery but there were no instructions from the surgeons for that. She said a lot of times with healthy babies they just draw that during "prep." I guess that makes better sense because by then they will be under and not feel the stick of the needles. I am thankful so far that she has not had to have any pre-op visits for labs/bloodwork.
We will be in a "holding" area with her. We will be able to stay with her until surgery time at 7:30am. Nurses will be available for questions and right before the surgery at 7:30 the surgeons and anesthesiologist will come in for any questions we may have. I am thankful Leah is the first surgery Monday morning....we won't have too long to wait with her being hungry...and we may be able to keep her asleep. She sleeps well that time of morning.
Our surgeons will be fresh off of a weekend and our plastic surgeon just came back from vacation. That is kind of nice.
So we'll drive down Sunday afternoon...get settled in the Conine Clubhouse....grab some dinner and try to get to bed EARLY!! I am not sure how much sleep we will get but Leah usually sleeps well between 9-1 or 2 so I should take advantage of that time frame though I am not normally able to go to sleep that early. I will wake to feed her her last feeding around 3pm and hopefully she will go back to sleep right away like she normally does (though she hasn't the past 2 nights!!). I am praying she will sleep well these next 3 nights so that I can get caught up on some sleep before next week.
We also found out today that though the PICU rooms are private that the regular pediatric rooms are NOT! They said sometimes if they are not busy they will keep the babies in the PICU for the rest of their stay. They put a request in for me for a private room since I am nursing but there are no guarantees. Pray that we are able to stay in a private room for the duration because this thing is stressful enough without worrying about Leah's crying keeping another family awake or them keeping us awake. We've always had private hospital rooms for all my births and when I've stayed in the hospital with Rebecca for a week when she was 2 months old. I really can't imagine how hard it would be caring for Leah and not having privacy...privacy to nurse, pump, sleep etc.
Tomorrow we have a lot of loose ends to tie up...cleaning, laundry, packing, paying bills, etc. I pray Leah takes better naps so we get it all done.
Remember to leave your comments for us....we LOVE hearing from you and will be printing these out for Leah's scrapbook! Or drop us an email. THANKS again for all your love and support.
Friday, April 11, 2008
Only a few more days.....
I can't believe Leah's surgery is right around the corner! I mean in 3 days we will be driving down to the hospital and in 4 days she'll be in surgery. This day is now much anticipated...not because we want Leah to go through this...but because it means the "wait" will be over. The quarantine will end for the girls the minute we leave on Sunday and they will be able to get back out into public, see friends and their normal lives. The worry of Leah getting sick and having surgery postponed and fretting about every little germ will be over! It also means Leah will be on the road to recovery and we won't have the strain of this surgery hanging over our heads anymore!
I have been told by other "cranio" moms that though handing her over to the surgeon was the hardest thing they'd ever done, that there is also a sense of relief....no more worrying, no more waiting. Relief that nothing happened to cancel or postpone the surgery. Knowing it is out of our hands now and turned over to skilled surgeons and ultimately God's hands! Though I dread the pain Leah will experience and the recovery process for her I will be relieved to see her get to the "other side" of this surgery!
The blessings I have experienced these past 2 weeks have been incredible! I am thankful for your prayers and support! I thought for sure the 2 weeks before surgery I would be a basket case. I was surprised to find that it has been the exact opposite! I can feel God's presence and the peace that can only come from Him....a peace that passes all understanding. He has given me comfort, strength and assurance that Leah will be fine! I am amazed that I am so calm and rational. It truly is a miracle.
Now I know it will be hard saying goodbye to my girls on Sunday since it will be 4 days before I see them again...the longest I've ever been apart from them. I also know that I will start to get nervous the night before and especially the morning of surgery. But thankfully I also know that God will be standing right there beside us and we will not be going through this alone. Most importantly God will be with Leah and He will be guiding the hands of the surgeons as He is the Ultimate Physician!!
I have been told by other "cranio" moms that though handing her over to the surgeon was the hardest thing they'd ever done, that there is also a sense of relief....no more worrying, no more waiting. Relief that nothing happened to cancel or postpone the surgery. Knowing it is out of our hands now and turned over to skilled surgeons and ultimately God's hands! Though I dread the pain Leah will experience and the recovery process for her I will be relieved to see her get to the "other side" of this surgery!
The blessings I have experienced these past 2 weeks have been incredible! I am thankful for your prayers and support! I thought for sure the 2 weeks before surgery I would be a basket case. I was surprised to find that it has been the exact opposite! I can feel God's presence and the peace that can only come from Him....a peace that passes all understanding. He has given me comfort, strength and assurance that Leah will be fine! I am amazed that I am so calm and rational. It truly is a miracle.
Now I know it will be hard saying goodbye to my girls on Sunday since it will be 4 days before I see them again...the longest I've ever been apart from them. I also know that I will start to get nervous the night before and especially the morning of surgery. But thankfully I also know that God will be standing right there beside us and we will not be going through this alone. Most importantly God will be with Leah and He will be guiding the hands of the surgeons as He is the Ultimate Physician!!
Pre-surgical clearance!
I've been trying to get on here and post for the past couple days! Leah has had a great week taking regular naps. She has been quite the charmer and talking and cooing with us. She is also starting to take an interest in her toys, but the past 2 days she has required a lot more attention and her afternoon naps have been a lot shorter. Hence I have not been able to get this blog updated!
We went yesterday (Wednesday April 9) for Leah's pre-surgical clearance appt. with her pediatrician. Ironic that we have to take her into a pediatrician's office...where sick children visit daily....to get clearance that she is "healthy" enough for surgery! Especially after having her isolated from others, now I have to take her to a germ hot spot!!
I took many measures to help ensure she didn't pick anything up while we were there. I was blessed enough to have my mom watch my other 2 girls so that they weren't there touching everything and picking up germs. Leah was in her car seat practically the whole time and I was a fanatic about washing my hands while there. Her pediatrician was very careful and before we left I scrubbed up and washed Leah's hands since she likes to stick her WHOLE hand in her mouth these days! When we got home I was sure to change my clothes and I gave Leah a bath.
She is healthy and got her clearance for surgery!! Now just a few more days to get through and to keep her healthy. Thank you for all the prayers in this area! Leah weighed 12 lbs 8 oz and was 24 inches long.
We went yesterday (Wednesday April 9) for Leah's pre-surgical clearance appt. with her pediatrician. Ironic that we have to take her into a pediatrician's office...where sick children visit daily....to get clearance that she is "healthy" enough for surgery! Especially after having her isolated from others, now I have to take her to a germ hot spot!!
I took many measures to help ensure she didn't pick anything up while we were there. I was blessed enough to have my mom watch my other 2 girls so that they weren't there touching everything and picking up germs. Leah was in her car seat practically the whole time and I was a fanatic about washing my hands while there. Her pediatrician was very careful and before we left I scrubbed up and washed Leah's hands since she likes to stick her WHOLE hand in her mouth these days! When we got home I was sure to change my clothes and I gave Leah a bath.
She is healthy and got her clearance for surgery!! Now just a few more days to get through and to keep her healthy. Thank you for all the prayers in this area! Leah weighed 12 lbs 8 oz and was 24 inches long.
Sunday, April 6, 2008
New Pictures of Leah
Leah is 9 and 10 weeks old in this photos. You can't tell in the pictures but her eyes are very blue. In one of them she is playing with the new toy she got in her Easter basket. Click picture to enlarge.
Leah is Loved!
I wanted to add some pictures of Leah with her family. Click on the picture to enlarge it.
Tuesday, April 1, 2008
In Quarantine!
As of yesterday we are now in quarantine!! Since we are only 12 days away from Leah's surgery we need to keep her healthy....they won't operate if she so much as has a runny nose! Since we homeschool it will be easy enough to keep the girls and Leah home. In addition to normal schooling we have some other fun activities to keep the girls from boredom....playing board games together, watching family movies, taking neighborhood walks, etc.
In won't be too hard for me since I am a bit of a homebody...though I do like to get out to our normal activities and we will miss those! But I will get more quality time with my girls and get a lot more done around the house...it will be nice to catch up on some odds and ends on the to-do list.
Leah is less fussy this past week and taking regular naps during the day which is so nice! I am able to get a lot more accomplished. For awhile there if we were home she wasn't napping well and wanted to be held a lot! She will be 11 weeks old on Thursday and I can't believe surgery is just around the corner. We are all ready to have it behind us! Thanks for the prayers and don't forget to add your comments here. We will be printing them out for Leah's scrapbook and I know she'll enjoy reading them someday!!
In won't be too hard for me since I am a bit of a homebody...though I do like to get out to our normal activities and we will miss those! But I will get more quality time with my girls and get a lot more done around the house...it will be nice to catch up on some odds and ends on the to-do list.
Leah is less fussy this past week and taking regular naps during the day which is so nice! I am able to get a lot more accomplished. For awhile there if we were home she wasn't napping well and wanted to be held a lot! She will be 11 weeks old on Thursday and I can't believe surgery is just around the corner. We are all ready to have it behind us! Thanks for the prayers and don't forget to add your comments here. We will be printing them out for Leah's scrapbook and I know she'll enjoy reading them someday!!
Sunday, March 30, 2008
Prayers for Leah!
Saturday night after our church service we met with one of our pastors at the front of the church. He brought over an elder and they prayed over Leah for her surgery, God's healing and peace for us during this time. The pastor annointed her with oil. It was a special time and we felt God's presence and peace. This is a scary time but we are not alone!! God is with us, walking beside us and holding our hand. We are very blessed indeed!
Then this evening we met with our small group from church....friends we've known for a long time. We were blessed as they gathered around us and prayed for Leah and her surgery. We feel loved and are SO grateful to have all of your prayers and support! I know without a doubt the strength I feel on a daily basis as I care for my family is a direct result of prayer. Thank you as you continue to pray for Leah and our family!
Please pass Leah's blog to others!!!
Then this evening we met with our small group from church....friends we've known for a long time. We were blessed as they gathered around us and prayed for Leah and her surgery. We feel loved and are SO grateful to have all of your prayers and support! I know without a doubt the strength I feel on a daily basis as I care for my family is a direct result of prayer. Thank you as you continue to pray for Leah and our family!
Please pass Leah's blog to others!!!
Wednesday, March 26, 2008
Last craniofacial appt. before surgery
Yesterday we met with Dr. Stelnicki again. He basically went over what we could expect with the surgery and what he would be doing. No real surprises. He said they would be making 2 incisions (possibly 3). One would be on the top of her head and one on her right side (where the suture is fused). The incisions would be V-shaped.
He said that she has a 40% chance of needing a blood transfusion. It would be a 70% chance if we were having the traditional "open" CVR surgery. He mentioned "direct donor" blood for Leah and told us how to go about having people donate blood for her. We still have to find out Leah's blood type and I was told it was as simple as calling our pediatrician. I'm working on finding out her blood type. I also have to call the blood bank (in Hollywood, FL) to find out exactly when the donations should take place. So far the information they gave me at the surgeons says at least 72 hrs. before the surgery but no more than 5 days before. If that is the case that is a very small window of Wednesday and Thursday before the surgery. Also people would have to drive down to Hollywood to donate as they will not be transporting the blood. So much to think about. As soon as I get all the details I will post here in case anyone wants to donate blood for Leah. Even if I am a match they will not allow me since I am within 6 months of having given birth.
He said they would be putting in a drainage catheter. The will be using dissolvable screws. The surgery will last 4-5 hours and that will also be the amount of time she is under anesthesia. Afterward her head will be wrapped in a turban-style bandage and that will be removed a day or 2 later.
My mom went with me this time since Ken was out of town (overnight) on business and was coming home later that day. Dr. Stelnicki's office is right there at the hospital where Leah is having her surgery so I made it a point to take a tour of the hospital. I basically wanted to see where the OR was and the waiting area as well as the pediatric ICU and the pediatric rooms. It definitely helps me mentally and emotionally prepare for surgery day. I can now picture where we will be waiting while she is in surgery, where we will be getting updates by phone and where the surgeons will walk out to say it's finished! I don't know why it helps me, but it does. I will be getting enough new information thrown my way as soon as we arrive and over the time we are there.....the less I have to assimilate that day the better! This way I'll have my bearings.
I met some nice volunteers up in the pediatric ward. An older married couple volunteers in the family lounge/playroom area and they told me we've come to the best place for surgery and how great the hospital and staff are. They said Leah will be in the best of care!
It is hard to believe that in just 17 days we will be heading down there for her surgery. There are many hurdles to cross before that day....the main one which is keeping her healthy. If she gets sick (so much as a runny nose) they will postpone surgery. The minimally-invasive method can only be used on younger infants so if her surgery gets moved she possibly won't be able to have this method.
Pray that Leah stays healthy!!!!!
He said that she has a 40% chance of needing a blood transfusion. It would be a 70% chance if we were having the traditional "open" CVR surgery. He mentioned "direct donor" blood for Leah and told us how to go about having people donate blood for her. We still have to find out Leah's blood type and I was told it was as simple as calling our pediatrician. I'm working on finding out her blood type. I also have to call the blood bank (in Hollywood, FL) to find out exactly when the donations should take place. So far the information they gave me at the surgeons says at least 72 hrs. before the surgery but no more than 5 days before. If that is the case that is a very small window of Wednesday and Thursday before the surgery. Also people would have to drive down to Hollywood to donate as they will not be transporting the blood. So much to think about. As soon as I get all the details I will post here in case anyone wants to donate blood for Leah. Even if I am a match they will not allow me since I am within 6 months of having given birth.
He said they would be putting in a drainage catheter. The will be using dissolvable screws. The surgery will last 4-5 hours and that will also be the amount of time she is under anesthesia. Afterward her head will be wrapped in a turban-style bandage and that will be removed a day or 2 later.
My mom went with me this time since Ken was out of town (overnight) on business and was coming home later that day. Dr. Stelnicki's office is right there at the hospital where Leah is having her surgery so I made it a point to take a tour of the hospital. I basically wanted to see where the OR was and the waiting area as well as the pediatric ICU and the pediatric rooms. It definitely helps me mentally and emotionally prepare for surgery day. I can now picture where we will be waiting while she is in surgery, where we will be getting updates by phone and where the surgeons will walk out to say it's finished! I don't know why it helps me, but it does. I will be getting enough new information thrown my way as soon as we arrive and over the time we are there.....the less I have to assimilate that day the better! This way I'll have my bearings.
I met some nice volunteers up in the pediatric ward. An older married couple volunteers in the family lounge/playroom area and they told me we've come to the best place for surgery and how great the hospital and staff are. They said Leah will be in the best of care!
It is hard to believe that in just 17 days we will be heading down there for her surgery. There are many hurdles to cross before that day....the main one which is keeping her healthy. If she gets sick (so much as a runny nose) they will postpone surgery. The minimally-invasive method can only be used on younger infants so if her surgery gets moved she possibly won't be able to have this method.
Pray that Leah stays healthy!!!!!
Saturday, March 22, 2008
Leah's Surgery
For more specific information on Leah's surgery click here and here.
These are the two main craniofacial teams that specialize in the exact endoscopic method of surgery that Leah will be having. One of these teams will be performing Leah's surgery. In most endoscopic cranio surgeries the surgeons just go in and release the suture by removing a strip of the skull and then the patient is in the helmet for 12-18 months.
In Leah's surgery they will be "reconstructing" her skull shape while in there and this will give immediate results in the shape of her head and shorten the time in the helmet. This is the traditional "CVR" surgery (cranial vault reconstruction) but done the with an endoscope in a "minimally-invasive" fashion.
We feel so blessed that our pediatrician caught this early enough to qualify for the endoscopic method. If a baby is over 4 months of age they have to perform the traditional method of surgery. In this method they have to make an ear to ear incision and actually remove the skull plates they are working on, reshape them and put them back.
These are the two main craniofacial teams that specialize in the exact endoscopic method of surgery that Leah will be having. One of these teams will be performing Leah's surgery. In most endoscopic cranio surgeries the surgeons just go in and release the suture by removing a strip of the skull and then the patient is in the helmet for 12-18 months.
In Leah's surgery they will be "reconstructing" her skull shape while in there and this will give immediate results in the shape of her head and shorten the time in the helmet. This is the traditional "CVR" surgery (cranial vault reconstruction) but done the with an endoscope in a "minimally-invasive" fashion.
We feel so blessed that our pediatrician caught this early enough to qualify for the endoscopic method. If a baby is over 4 months of age they have to perform the traditional method of surgery. In this method they have to make an ear to ear incision and actually remove the skull plates they are working on, reshape them and put them back.
Neurosurgeon appointment and surgery info
We met with Leah's neurosurgeon, Dr. Ian Heger, on March 10. It was this appt. that we brought Leah's cat scan with us. He viewed her scan before meeting with us. The good news is that it was confirmed that Leah only has ONE suture fused! This is a huge blessing as there are more issues when more than one suture is closed. He also told us that Leah's brain was "perfect." In other words she has no intracranial pressure and his opinion was that she looked great in that capacity!
Dr. Heger has been doing this surgery for awhile now and seemed very confident and skilled. We had many questions for him about the surgery. One thing that was a huge source of comfort is that Leah will be operated on by a "craniofacial team" which means that they work together on a regular basis. Her team will consist of her 2 surgeons (Dr. Heger, pediatric neurosurgeon and Dr. Stelnicki, pediatric plastic surgeon), a pediatric anesthesiologist, pediatric nurses etc. Dr. Heger and Dr. Stelnicki have been performing surgery together for 5 years and we have been told that there are many, many benefits to having a craniofacial team! They are like a well-oiled machine and all know what they are doing and what to expect. We are grateful our pediatrician led us to the right surgeons and that Leah will have the benefit of a craniofacial team. Some babies and families have to fly hundreds or thousands of miles away for the right specialists.
Leah's surgery will last 4-5 hours. The first 1.5 hrs are surgery prep...putting her under, etc. Then they will perform the operation which entails making 2 small incisions on each side of her forehead. They will then use an "endoscope" to see what they are doing as they cut or release the fused suture. They will then reshape her skull bones using special tools and will doing a lot of work reconstructing her forehead and eye socket.
The nurse will be making phone calls to us while we are in the waiting room and give as hourly updates. And we will be able to see Leah about 45 minutes after surgery is completed. She will spend the first 24 hrs in the pediatric intensive care unit. They said it is very likely she will need a blood transfusion.
Leah will be in the hospital for 4-5 days after her surgery. We will be staying with her and have free lodging at the "Conine Clubhouse (listed in link section)." She will be on morphine for the first 24 hours post-op and then gradually weaned to tylenol. We are told that there will be substantial swelling after the surgery and her eyes may very well swell shut for a couple days. It is all very scary but we have met very reassuring "cranio" parents online whose babies have already had the surgery and come through fine. We are spending these next 3.5 weeks with equal amounts of anticipation and dread. We dread what they are doing to her but at the same time we are anxious to get to the "other side" of the operation.
Leah will then be fitted with a molding band or helmet that she will have to wear for 23 hours out of everyday. We are told that she will be in this helmet for 3-6 months to help mold her head as it continues to grow. We were blessed to find out that our health insurance will cover the costs of these helmets (about $3,000 each and she would need 2-3 as her head will continue to grow); but only because Leah's condition is associated with a surgery and it is considered part of her treatment. This is a huge blessing since Leah's surgery is going to be a huge out of pocket expense for us! Though we have health insurance we have a very high deductible to meet and then still have to pay the remaining 20% of the surgery, hospital and all related costs. And since we are still paying on the medical bills for her birth the timing couldn't be worse. Prayer in this area would be greatly appreciated!
Despite all the stress we are under right now we are still managing to find JOY in the journey! God has used this situation to bring our family closer than ever before. Things of little importance quickly fade to the background as we cling to what is important in life....our faith, our family and our friends! While Leah's deformity was certainly a surprise to us, we know that nothing is a surprise to God...He knows all and He made her just the way she is. She is in His hands and we trust Him completely!
Dr. Heger has been doing this surgery for awhile now and seemed very confident and skilled. We had many questions for him about the surgery. One thing that was a huge source of comfort is that Leah will be operated on by a "craniofacial team" which means that they work together on a regular basis. Her team will consist of her 2 surgeons (Dr. Heger, pediatric neurosurgeon and Dr. Stelnicki, pediatric plastic surgeon), a pediatric anesthesiologist, pediatric nurses etc. Dr. Heger and Dr. Stelnicki have been performing surgery together for 5 years and we have been told that there are many, many benefits to having a craniofacial team! They are like a well-oiled machine and all know what they are doing and what to expect. We are grateful our pediatrician led us to the right surgeons and that Leah will have the benefit of a craniofacial team. Some babies and families have to fly hundreds or thousands of miles away for the right specialists.
Leah's surgery will last 4-5 hours. The first 1.5 hrs are surgery prep...putting her under, etc. Then they will perform the operation which entails making 2 small incisions on each side of her forehead. They will then use an "endoscope" to see what they are doing as they cut or release the fused suture. They will then reshape her skull bones using special tools and will doing a lot of work reconstructing her forehead and eye socket.
The nurse will be making phone calls to us while we are in the waiting room and give as hourly updates. And we will be able to see Leah about 45 minutes after surgery is completed. She will spend the first 24 hrs in the pediatric intensive care unit. They said it is very likely she will need a blood transfusion.
Leah will be in the hospital for 4-5 days after her surgery. We will be staying with her and have free lodging at the "Conine Clubhouse (listed in link section)." She will be on morphine for the first 24 hours post-op and then gradually weaned to tylenol. We are told that there will be substantial swelling after the surgery and her eyes may very well swell shut for a couple days. It is all very scary but we have met very reassuring "cranio" parents online whose babies have already had the surgery and come through fine. We are spending these next 3.5 weeks with equal amounts of anticipation and dread. We dread what they are doing to her but at the same time we are anxious to get to the "other side" of the operation.
Leah will then be fitted with a molding band or helmet that she will have to wear for 23 hours out of everyday. We are told that she will be in this helmet for 3-6 months to help mold her head as it continues to grow. We were blessed to find out that our health insurance will cover the costs of these helmets (about $3,000 each and she would need 2-3 as her head will continue to grow); but only because Leah's condition is associated with a surgery and it is considered part of her treatment. This is a huge blessing since Leah's surgery is going to be a huge out of pocket expense for us! Though we have health insurance we have a very high deductible to meet and then still have to pay the remaining 20% of the surgery, hospital and all related costs. And since we are still paying on the medical bills for her birth the timing couldn't be worse. Prayer in this area would be greatly appreciated!
Despite all the stress we are under right now we are still managing to find JOY in the journey! God has used this situation to bring our family closer than ever before. Things of little importance quickly fade to the background as we cling to what is important in life....our faith, our family and our friends! While Leah's deformity was certainly a surprise to us, we know that nothing is a surprise to God...He knows all and He made her just the way she is. She is in His hands and we trust Him completely!
Friday, March 21, 2008
Leah's Scan Images
In the front view you can see that her left coronal suture (right side for us as we are looking at her) is open and that her right coronal suture is close or fused together. When you look at the side views below you will see it more clearly. In these pictures you can also see that her left eye socket is smaller than her right and her nose is slightly crooked. During the surgery they will be fixing her eye socket as this can cause problems for her later in life.
The suture down the middle of the forehead is called the Metopic suture. When it is fused together the forehead will have a prominent ridge down the middle and the head will look triangular from above. Hers is open.
From the top view you can see how misshapen her head is and the bulge on her forehead. The suture on top of the skull is the saggital. Hers is open but the saggital suture is the most common to be fused.
Her right coronal suture is closed as you can see below.
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Her left coronal suture is open as you can see below.
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Some babies have multiple sutures that are closed which can cause intra-cranial pressure (ICP) and affect their brain development. It is rare for this to happen in single suture cases but can be a possibility.
When a suture is closed it affects the direction the brain will grow and causes the head to be misshapen or deformed. The sutures are supposed to close at later dates as we get older, some in childhood and some don't even close until adulthood.
We found Leah's scans fascinating and though we wish we weren't in this situation at all, we have found we are quickly becoming experts on craniosynostosis. Surprisingly we have found through meeting other parents online that a lot of pediatricians don't know much about craniosynostosis and many moms have had to push to get referrals to get their baby's head checked out.
Craniosynostosis affects 1 in 2,000 babies and though that seems rare to me I have found through the online community that it is quite common. The only way to "fix" cranio is through surgery. Unless it is a type of cranio that is associated with a syndrome (Leah's is not), craniosynostosis happens sporadically with no known cause and is not genetic.
Will post soon about Leah's upcoming surgery and her visit with the neurosurgeon on March 10th.
Leah's Cat Scan
Leah had a 3D cat scan on Feb 21st. Thankfully we were able to get the scan without Leah needing sedation. Since she is still very young we were just able to coordinate her feeding and nap schedule so that she would be hungry and tired. Once at the hospital I was able to nurse her and then she quickly fell asleep. The scan only took minutes and I was relieved that they did not have to sedate her! I have a few photos of that day. Leah was only 5 weeks old that day!
The last photo was taken after the cat scan while I was waiting for the images to be on the cd.
The last photo was taken after the cat scan while I was waiting for the images to be on the cd. Thursday, March 20, 2008
A few recent pictures and Leah's 2 month well visit
Leah is growing so fast! She just turned 2 months old this past Monday and had her well check up this past Tuesday. Leah is now 11 lbs 8 oz and 23 1/2 inches tall. She is starting to coo at us and likes to look at herself in the mirror when we are changing her diaper. She sleeps well at night only waking to eat twice and going right back to sleep! Leah can be fussy and we sometimes wonder if she is having headaches due to the cranio. It will be interesting to see how she is doing after surgery.
Leah's first time at the beach last week...she is 7 weeks 6 days.
Leah last Friday....she was 8 weeks 1 day.
Leah is such a blessing to us!!
Leah's first time at the beach last week...she is 7 weeks 6 days.
Leah last Friday....she was 8 weeks 1 day.
Leah is such a blessing to us!!Saturday, March 15, 2008
Craniosynostosis
Craniosynostosis is the premature fusing of one or more plates in the skull. Leah has right coronal cranio. The coronal suture (area between the 2 plates that should be open) runs from ear to ear at the front of the head. Leah's right suture is closed/fused together which caused the forehead above her left eye to bulge out. The right side of her forehead (where the suture is fused) is flat and kind of dented in.
This also caused her left eye socket to be smaller than her right and her nose is slightly crooked. Though her deformity is noticeable in this photo taken at 7 wks 4 days, cranio is especially noticeable from a bird's eye view.
For more information on craniosynostosis click here
In the upcoming posts I will be sharing about Leah's 3D cat scan as well as photos from it, information about Leah's upcoming surgery, recent pictures of Leah and other updates. We hope you'll continue to visit Leah's blog!
This also caused her left eye socket to be smaller than her right and her nose is slightly crooked. Though her deformity is noticeable in this photo taken at 7 wks 4 days, cranio is especially noticeable from a bird's eye view.For more information on craniosynostosis click here
In the upcoming posts I will be sharing about Leah's 3D cat scan as well as photos from it, information about Leah's upcoming surgery, recent pictures of Leah and other updates. We hope you'll continue to visit Leah's blog!
Thursday, March 13, 2008
Part 2
Ken was out of town the 3 days when we first found out about Leah's condition. I was 2 weeks postpartum so I was very emotionally vulnerable. I had a hard couple of days and I just couldn't believe this was happening to us! Thankfully we have older girls and that helps to serve as a huge distraction. Life must go on. I called and scheduled our appt. with Dr. Stelnicki (our craniofacial doctor otherwise known as a plastic surgeon) for February 14 which was the soonest we could get in. Ken scheduled the time off work so he could go with me.
Even though the pediatrician had already told us the radiologist report said "craniosynostosis" it wasn't an official diagnosis until we saw a plastic surgeon or neurosurgeon with the x-rays. I researched during the 10 day wait and learned all about craniosynostosis as well as plagiocephaly (which is a misshapen head that can be fixed without surgery) hoping that would be our diagnosis. Of course many things I saw and read online confirmed it would be cranio. I saw pictures of other babies that looked exactly like Leah. Basically by the time we went to see Dr. Stelnicki I had already figured out which suture had fused.
After the initial shock that Leah may need surgery wore off, we tried to live life as normally as possible during our 10 day wait. We knew that if surgery were part of God's plan He would sustain us through this time and that He would take care of Leah!
Ken and I drove down to the appt. on Valentine's Day with Leah while my mom stayed home with our older girls. We were calm and enjoyed our time together. The whole drive down we discussed the situation and hoped we would get a diagnosis that would not require surgery. As soon as Dr. Stelnicki walked in he could tell with 100% certainty that Leah had coronal craniosynostosis. He did have x-rays to confirm and he looked at them, but he was able to tell just by looking at her. The first words out of my mouth were, "Oh no, I was hoping it was plagio." His eyes were warm and kind as he gently said no. Though we were expecting that diagnosis it was still a bit of a surprise. All the research had prepared me and I was thankful for that, but nothing can really prepare you to hear your infant is going to need surgery on her skull!
He said her case was moderate to severe and told us we had 2 options but both entailed surgery. I had already read about both surgeries online but was not sure if the "minimally-invasive endoscopic" method would be available to us. They have to be under 4 months of age at the time of surgery (which Leah will be), but we were not sure which sutures could be fixed this way. Dr. Stelnicki spent a lot of time with us and never made us feel he was in a hurry. He answered all of our questions in a calm and reassuring manner. Even though this diagnosis was huge and scary to us, it was everyday "work" to him.
He told us that we didn't need to decide that day but if we were leaning toward the "endoscopic" method that we would want to walk out with a surgery date since time was of the essence. Leah was 4 wks old at the time of this appt. and she would need the surgery before 4 months if we went this route. He said we could always change it later. He was very thorough and sent us to get all our information and appts. scheduled with his surgery assistant. We were very impressed with us office as they were very organized and tried to take all the other stresses off the parent.
Ken and I walked out with a surgery date of April 14. Our friends and family had been praying for us that day and I know it helped tremendously. We were able to remain calm and strong, ask the right questions and remember the visit with clarity later.
In my next post I'll explain craniosynostosis in detail.
Even though the pediatrician had already told us the radiologist report said "craniosynostosis" it wasn't an official diagnosis until we saw a plastic surgeon or neurosurgeon with the x-rays. I researched during the 10 day wait and learned all about craniosynostosis as well as plagiocephaly (which is a misshapen head that can be fixed without surgery) hoping that would be our diagnosis. Of course many things I saw and read online confirmed it would be cranio. I saw pictures of other babies that looked exactly like Leah. Basically by the time we went to see Dr. Stelnicki I had already figured out which suture had fused.
After the initial shock that Leah may need surgery wore off, we tried to live life as normally as possible during our 10 day wait. We knew that if surgery were part of God's plan He would sustain us through this time and that He would take care of Leah!
Ken and I drove down to the appt. on Valentine's Day with Leah while my mom stayed home with our older girls. We were calm and enjoyed our time together. The whole drive down we discussed the situation and hoped we would get a diagnosis that would not require surgery. As soon as Dr. Stelnicki walked in he could tell with 100% certainty that Leah had coronal craniosynostosis. He did have x-rays to confirm and he looked at them, but he was able to tell just by looking at her. The first words out of my mouth were, "Oh no, I was hoping it was plagio." His eyes were warm and kind as he gently said no. Though we were expecting that diagnosis it was still a bit of a surprise. All the research had prepared me and I was thankful for that, but nothing can really prepare you to hear your infant is going to need surgery on her skull!
He said her case was moderate to severe and told us we had 2 options but both entailed surgery. I had already read about both surgeries online but was not sure if the "minimally-invasive endoscopic" method would be available to us. They have to be under 4 months of age at the time of surgery (which Leah will be), but we were not sure which sutures could be fixed this way. Dr. Stelnicki spent a lot of time with us and never made us feel he was in a hurry. He answered all of our questions in a calm and reassuring manner. Even though this diagnosis was huge and scary to us, it was everyday "work" to him.
He told us that we didn't need to decide that day but if we were leaning toward the "endoscopic" method that we would want to walk out with a surgery date since time was of the essence. Leah was 4 wks old at the time of this appt. and she would need the surgery before 4 months if we went this route. He said we could always change it later. He was very thorough and sent us to get all our information and appts. scheduled with his surgery assistant. We were very impressed with us office as they were very organized and tried to take all the other stresses off the parent.
Ken and I walked out with a surgery date of April 14. Our friends and family had been praying for us that day and I know it helped tremendously. We were able to remain calm and strong, ask the right questions and remember the visit with clarity later.
In my next post I'll explain craniosynostosis in detail.
Wednesday, March 12, 2008
Journaling our Journey
After much anticipation Leah was born on January 17, 2008 after a fairly quick labor. We were all in awe of her sweet presence and her sisters loved coming to the hospital to meet her! We spent our first couple weeks getting to know her and settling into life as a family of five. Those 2 weeks were blessed and happy weeks....we had no idea what was waiting around the bend.
It was at Leah's 2 week well visit that our pediatrician noticed a slight bulge on the top left hand side of Leah's forehead. I had just noticed it a day or so before but thought nothing of it. Leah had been born with some swelling on her left side of her forehead with her left eye swollen shut.
It was at Leah's 2 week well visit that our pediatrician noticed a slight bulge on the top left hand side of Leah's forehead. I had just noticed it a day or so before but thought nothing of it. Leah had been born with some swelling on her left side of her forehead with her left eye swollen shut.
Our pediatrician sent us to get x-rays. I was surprised....x-rays? He downplayed it saying just to be on the safe side. My oldest daughter was there and she got really concerned. I calmed her down saying that Leah was fine and that we were just getting things checked out. Since the imaging office was across the street and we didn't need an appt I went ahead and took her right over for the x-rays. I figured I wanted to know as soon as possible.
Leah did well while they took her x-rays. The women were surprised at how still she laid and didn't cry. They expressed what a sweet baby she was. I left there feeling good that we'd gotten it out of the way, starting to worry a bit but trying to think positively. I called Ken to let him know. He was out of town on business that day.
Our pediatrician called at 5:30 that evening saying that something was showing up and we'd need to take her to see a specialist....a neurosurgeon! He told me not to let that freak me out and gave me the name of a specialist that was covered under our insurance. He could tell I was worried and reassured me that it was best to get things checked out and he was doing what he would want done if it were his daughter. We later found out that this was our "craniofacial" doctor or plastic surgeon. This was the first time I'd heard the term "craniosynostosis." I had him spell it for me as I knew I would be googling it as soon as we hung up. This all happened on Monday February 4th....what should have been a normal 2 week well baby visit turned into the shock of my life!
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