As many of you already know BrynLee spent the weekend trying to get teeth! Friday started with low grade fevers and fussiness, Saturday just slowly got worse and Sunday was miserable! She still had a pretty low fever, but she kept getting belly aches and was just so uncomfortable! Even with medicine she was just miserable! She just sat in my arms and moaned!
I couldn't sit down.
I couldn't stand still.
I had to walk. And bounce. All day long!
Sunday night when I put BrynLee in the bathtub I just knew. I knew she had another infection. I knew it was going to be a long night! She's usually so happy and plays and kicks and splashes, even when she's not feeling the best, but not last night! She just laid there. Laid there and looked at me with eyes that said, "Mom, make it better!" Oh how I hate seeing those eyes!
I got her to bed by 9ish and she woke up at midnight. This is very uncommon, but since Friday she's got up 2-3 times a night. (I really hope once she feels better she'll go back to her regular schedule!) She didn't have a fever and ate pretty well, so I put her back to bed..
3:00AM on the dot.. That cry. Her cry. The one I know very distinctly as PAIN! She doesn't even really cry, she just moans. It's horrible. It's heartbreaking!
As soon as I picked her up I knew. She was so HOT! I took her temperature with our ear thermometer and it said 100.6! I litterally wanted to throw it against the wall. I knew she was hotter than that. I went to the bathroom and dug through the cupboard to find my regular digital thermometer! I positioned it in her armpit, wrapped her up (she hates that thermometer, why it makes any difference I don't know, but she screams!) and paced the floor while I waited! It STARTED at 100. Waited 101.3. Waited 102.7. Waited. 103.2. Waited and finally it beeped. 103.7! Again. That dreaded number!
I got a pedialyte bottle and we sat in the rocker. She will throw up formula when she's that hot and I knew she needed all the hydration she could get! With every rock back and forth I thought of how I was going to get her to the hospital! Did I wake up my husband and have him go with us so I could hold BrynLee all the way to town!? There's no way I could make her sit in her carseat and scream for 45 minutes in that condition! If he went with me that meant we'd have to find someone to come sit with the other kids at 3AM! I didn't want to do that! And I couldn't go alone! I can't drive that far and hold her and at that time she needed held! I rocked and rocked! She ate, she burped, she cried and after a while she finally slept. And I rocked! I couldn't put her down! I couldn't let her go! She was still so hot! I took her temperature again and it was 102.9. It had gone down! Not much, but anything was progress!
I rocked.
Whenever I hold her I'm constantly kissing her forhead! Just out of habit. Alot when she has a fever, to check her temperature, but it's just something I always do. 4:30AM, I kissed her forhead and it was cold! I took her temperature again, somehow without waking her up, and it was 98.6. Right on the money! I was finally comfortable putting her back in bed!
I was hoping to get another 30 minutes of sleep, but that didn't happen. I ended up in the shower at 5:15 and ready to go by 7. The doctor's office doesn't even open until 8!
The soonest they could get her in was 10:45 and we were there by 10:30. Went in, sat down, waited! After talking to her pediatrician, and him talking to her urologist, we decided we were going to try to cath her. Today was the first time since her post op checkup with Dr. Wallis at Primary Childrens. At that time he wasn't able to get anything because her bladder wasn't holding any urine and she was leaking constantly! I've noticed over the last few weeks that she only urinates when she cries, or pushes, so I knew her bladder was holding urine! And yesterday I found her urethra! Ya, sounds weird huh! You'd just have to see to understand. Anyway, knowing all this, we decided that getting the cleanest urine sample meant to cath!
So we did.
And we got it. We got her bladder. We got urine! : D SUPER HUGE BIG AWESOME HAPPY SMILEY FACE!!!
This is great news! I literally almost jumped up and down I was so excited! Not only did we get her bladder, not only did we get urine, but we got 10 CC OF URINE, and the nurse actually stopped before her bladder was empty, so that's even better! She's holding AT LEAST 10cc of urine, most likely more! WOOHOO! Really, that's so awesome and I couldn't be happier!
The downside to all this is yes, BrynLee has another infection. She got a shot today and has to start up antibiotics again tomorrow and we'll touch base with her urologist on where to go from here. To stay on the same prophylaxis, or change to something else. Something stronger! I believe what she is on now is as strong as they can go, but I may be wrong! We'll know more in a few days!
I just hope my sweet baby starts feeling better! I can't wait to have my happy little monkey back! :)
Monday, October 31, 2011
Wednesday, October 26, 2011
Thursday, October 20, 2011
Look Beyond The Defect
I have been reading a book called "Living With Bladder Exstrophy" and I wanted to share something with you out of the book! The first part is a story from a mother (who is also a nurse) of a little boy named Geoffery that has Bladder Exstrophy..
When I was reading this my jaw literally dropped! I am so very thankful to my family and friends for their wonderful support and for seeing BrynLee for more than her defect! You are all so amazing and caring! BrynLee is a beautiful, wonderful, happy baby and I'm told this by many people every single day!
I have spoken to many parents of children with exstrophy and the following is just one example of the initial reactions to their child by others. "After she was born and we knew that her condition was treatable, no one ever said to me or to my wife, 'Congratulations! You had a baby girl!'." As a mother of a child with exstrophy I have had similar experiences. Four months after Geoffery was born, my pediatrician said, "Geoffery is really cute, but I guess you hear that all the time." I was shocked by her statment. No one, not even my friends or family, had ever said Geoffery was cute. I began to realize we were guilty of viewing Geoffery in terms of his defect rather than as a cute, normal, healthy baby."How others view a child with exstrophy often colors the view of the parents. Feeling shocked, angry, sad, and powerless is common. The family further gets stressed by demands of the child's specialized medical needs. As a result, it is easy to understand how the family's views and actions impact the child with exstrophy. In a non-supportive environment, the psychosocial and medical aspects of a child with exstrophy will be exacerbated. However, the impact will be lessened in the supportive surroundings."
When I was reading this my jaw literally dropped! I am so very thankful to my family and friends for their wonderful support and for seeing BrynLee for more than her defect! You are all so amazing and caring! BrynLee is a beautiful, wonderful, happy baby and I'm told this by many people every single day!
Tuesday, October 18, 2011
Left Wondering
Of course, nobody can predict the future.. Nobody knows what's in store for themselves! Nobody knows what's in store for their children! I constantly find myself wondering what life is going to be like for BrynLee. Questions run through my head every day!
Will she walk on time?
Will she walk normally?
Will she walk at all?
Will she ever ride a bike, or a horse?
When will her next surgery be?
How many more surgeries will she have to have?
Will she ever gain continence?
Or will she have to cath the rest of her life?
What will school be like, will she be made fun of?
How will she deal with dating, boys and the the gym locker rooms?
Will she get married?
Will she ever get to have babies of her own?
If she does have a baby, will it have Bladder Exstrophy too?
I know the answers to these questions are years away, but they still pop into my head every day! Every time I look at her!
BrynLee is so beautiful! (Maybe I'm biased because she's mine, but I just think she's such a pretty little girl!) And not just on the outside, but on the inside as well! She's so happy and easy going! She's so laid back! She's content doing just about anything and she loves EVERYONE!
There are different ways people handle Bladder Exstrophy! Some people keep it a secret and tell only the closest of family members and friends! They hope to keep the child from being made fun of and spare them the shock of people finding out about their disorder!
Some people are open and tell the world! I'm one of those people.. If everyone knows, there's no opportunity for shock when people find out. Everyone will already know, and it will be nothing new to them! Everyone will already be supporting her I think the best way for BrynLee to handle this is to be open about it! We don't have to share every single detail with everyone, but share the basics and keep everyone informed about what's going on and what progress she's made with each step down the road!
I love my little girl so much and no matter what she does or doesn't do in her life, she'll always be my little angel! My little miracle baby!
Will she walk on time?
Will she walk normally?
Will she walk at all?
Will she ever ride a bike, or a horse?
When will her next surgery be?
How many more surgeries will she have to have?
Will she ever gain continence?
Or will she have to cath the rest of her life?
What will school be like, will she be made fun of?
How will she deal with dating, boys and the the gym locker rooms?
Will she get married?
Will she ever get to have babies of her own?
If she does have a baby, will it have Bladder Exstrophy too?
I know the answers to these questions are years away, but they still pop into my head every day! Every time I look at her!
BrynLee is so beautiful! (Maybe I'm biased because she's mine, but I just think she's such a pretty little girl!) And not just on the outside, but on the inside as well! She's so happy and easy going! She's so laid back! She's content doing just about anything and she loves EVERYONE!
There are different ways people handle Bladder Exstrophy! Some people keep it a secret and tell only the closest of family members and friends! They hope to keep the child from being made fun of and spare them the shock of people finding out about their disorder!
Some people are open and tell the world! I'm one of those people.. If everyone knows, there's no opportunity for shock when people find out. Everyone will already know, and it will be nothing new to them! Everyone will already be supporting her I think the best way for BrynLee to handle this is to be open about it! We don't have to share every single detail with everyone, but share the basics and keep everyone informed about what's going on and what progress she's made with each step down the road!
I love my little girl so much and no matter what she does or doesn't do in her life, she'll always be my little angel! My little miracle baby!
So Sweet
It's been 3 weeks 4 days since BrynLee's last urinary tract infection! Thankfully it wasn't too bad of an infection and like I said in the last post, my husband and I are really getting better at seeing the signs of an infection coming on! Last week BrynLee's urine output had decreased significantly and her urine smelled aweful! Those are the first signs, and at that stage, it's still reversable! I made her formula less concentrated so she was getting more water, took her off her rice cereal (we were using that to thicken because she was spitting up so much) and within 2 days she was back to normal wet diapers and the smell had disappeared! We're making progress! :)
The longest she's ever gone without an infection without antibiotics is 3 weeks! This stretch without antibiotics (just her prophylaxis) is only 1 week 4 days, but we're going to make it passed that 3 week mark! The countdown is on!
I can't believe how much BrynLee has grown! She's a little chunk monkey! Well ok, she's far from chunky, but she's HEALTHY! She's talking constantly, she's started giggling and she likes to be held, but she's also content just laying on the couch or playing in her bouncer! Last week I shaved all the long stringy hairs off to match the length of her hair coming in underneath and it's all even and growing nicely now! She's so pretty and looks exactly like her big sister! The only difference between the two is Aybri's dimple is on the right cheek and BrynLee's dimple is on the left! I can't wait until they are running around together and playing! It's going to be so much fun! BrynLee doesn't care too much for tummy time, but she does love her jumper we have up! She'll just lean back and kick her feet off the floor which makes her swing around! She is content in the jumper for hours! She just hangs out, literally! :)
BrynLee has an appointment with her local pediatrician next week and I'm so excited to see how much she's grown! Every single morning when I look at her I swear she's changed a litte more just overnight! She has the sweetest little spirit and really is such a blessing to our family!
The longest she's ever gone without an infection without antibiotics is 3 weeks! This stretch without antibiotics (just her prophylaxis) is only 1 week 4 days, but we're going to make it passed that 3 week mark! The countdown is on!
I can't believe how much BrynLee has grown! She's a little chunk monkey! Well ok, she's far from chunky, but she's HEALTHY! She's talking constantly, she's started giggling and she likes to be held, but she's also content just laying on the couch or playing in her bouncer! Last week I shaved all the long stringy hairs off to match the length of her hair coming in underneath and it's all even and growing nicely now! She's so pretty and looks exactly like her big sister! The only difference between the two is Aybri's dimple is on the right cheek and BrynLee's dimple is on the left! I can't wait until they are running around together and playing! It's going to be so much fun! BrynLee doesn't care too much for tummy time, but she does love her jumper we have up! She'll just lean back and kick her feet off the floor which makes her swing around! She is content in the jumper for hours! She just hangs out, literally! :)
BrynLee has an appointment with her local pediatrician next week and I'm so excited to see how much she's grown! Every single morning when I look at her I swear she's changed a litte more just overnight! She has the sweetest little spirit and really is such a blessing to our family!
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| Oct 14, 2011 |
Thursday, October 13, 2011
More Infections
After BrynLee's hernia repair surgery it was only 2 1/2 weeks later before she got another infection. My husband and I are getting better at knowing the signs and when she started with a fever at 6PM on September 23, I knew exactly what was going on. I gave her some tylenol, she fell asleep for a few hours and I checked her again at 9 and she was 102.9. Basically we had 2 options... Head to the hospital now, or wait till 3AM when I'm freaking out! So we went in and got it over with.
The same doctor was there so that was nice! He knew her condition, he knew what needed done! We got in and out alot faster than the first time and they were even ALOT busier! Blood draw, urine sampe, and shot of antibiotic and we were on our way! About 2 days later she was back to herself! :)
Dr. Wallis (BrynLee's Urologist) called me the next Monday morning with her suceptibility report and she's developing resistance to each new prophylaxis antibiotic we put her on. (This is NOT good!) She's currently on the strongest antibiotic we can give her, so if her next infection is resistant to this new med, I'm not sure where we go from there! She's been off her "actual" antibiotic and back on her prophylaxis for 1 week today, so we'll see how long it lasts! I've been VERY careful to keep her clean! I'm about to start wiping her lil bum with clorox wipes if I have to! LOL.. Just kidding, but that's how bad I want her to stay infection free!
The same doctor was there so that was nice! He knew her condition, he knew what needed done! We got in and out alot faster than the first time and they were even ALOT busier! Blood draw, urine sampe, and shot of antibiotic and we were on our way! About 2 days later she was back to herself! :)
Dr. Wallis (BrynLee's Urologist) called me the next Monday morning with her suceptibility report and she's developing resistance to each new prophylaxis antibiotic we put her on. (This is NOT good!) She's currently on the strongest antibiotic we can give her, so if her next infection is resistant to this new med, I'm not sure where we go from there! She's been off her "actual" antibiotic and back on her prophylaxis for 1 week today, so we'll see how long it lasts! I've been VERY careful to keep her clean! I'm about to start wiping her lil bum with clorox wipes if I have to! LOL.. Just kidding, but that's how bad I want her to stay infection free!
Wednesday, October 12, 2011
Progress
Ok, everything is working correctly for ME, but things might still have kinks for others.. If there is ANYTHING that's not working correctly for you please let me know so I can get it fixed ASAP!
Thanks!
Thanks!
Tuesday, October 11, 2011
In Transition
If links aren't working correctly or if pictures aren't showing up, etc... please be patient with us as BrynLee's page is in transition from a "blog" to a "private domain." This transition should be completed within the next 2 days! Thank you all for your continuted support and helping us spread the word about BrynLee2Boston!
Monday, October 10, 2011
Sunday, October 9, 2011
Hernia Repair
Dr. Wallis, BrynLee's urologist, called me 3 days after we got out of the hospital in Twin Falls. We got out Friday and he called Monday morning! He was checking on her to see how she was feeling and if her antibiotics were helping! The doctor from the emergency room at Cassia even called to check on her! I love her doctors! They are amazing and they all act like they care so much! It's such a great feeling!
After we discussed how she was feeling he told me we needed to get in and fix her hernias as soon as possible! My heart sank instantly! My gut was in my throat! How could this be possible? How could I send my baby back into surgery again already? It had only been 10 weeks since the last surgery! I know this is something I probably need to get used to, but I definately wasn't ready for it that day! BrynLee was just starting to feel good and be happy, I didn't want to just make her miserable again! But, I knew she needed it so we got everythin scheduled!
We went to Salt Lake on a Tuesday for tests and to meet with Dr. Wallis and her surgery was scheduled for Wed morning at 9. All went well on Tuesday and we even got to meet up with another family we had met while BrynLee was at Primary's the first time. It was so nice to see them and to see their baby doing so well! I have a love/hate relationship with that hospital! I hate it because I see so many sick kids when I'm there.. Some obviously sick, some leave you guessing, but all the same, sick kids! But I love that hospital because I know how many of those sick kids get better there! I know how many miracles happen there every single day! When we were there for BrynLee's initial stay every time I'd hear a helicopter come in I'd just cringe because I knew it was another sick baby, another premature baby!
BrynLee's surgery went well, and fast! It was only about an hour and 20 minutes! Short compared to her first surgery! While we were in the waiting room a surgeon came in and pulled a family aside into the consultation room.. I looked at my husband and said, "That can't be good if they take them in the consultation room!" Dr. Wallis came in about 10 minutes later and asked us to come into the consultation room next them! My belly knotted up instantly! My husband had gone to the bathroom so I was alone, I followed him into the room and I couldn't even sit down! He said he wanted to wait for my husband and when he saw the look on my face I think he knew what I was thinking! He said, "The surgery went fine and BrynLee is doing great!" He knew what I needed to hear! He told us that he scoped her previous repair and everything looked great and healed perfectly! She was even holding small amounts of urine! We were very pleased to say the least! : )
They took me back to recovery about 10 minutes later and my husband joined us about 20 minutes after that! BrynLee was very sleepy and fussy, but she was doing great! I got her to eat a little bit of pedialyte and her vitals all looked great, so about 2 hours after surgery we headed home!
After we discussed how she was feeling he told me we needed to get in and fix her hernias as soon as possible! My heart sank instantly! My gut was in my throat! How could this be possible? How could I send my baby back into surgery again already? It had only been 10 weeks since the last surgery! I know this is something I probably need to get used to, but I definately wasn't ready for it that day! BrynLee was just starting to feel good and be happy, I didn't want to just make her miserable again! But, I knew she needed it so we got everythin scheduled!
We went to Salt Lake on a Tuesday for tests and to meet with Dr. Wallis and her surgery was scheduled for Wed morning at 9. All went well on Tuesday and we even got to meet up with another family we had met while BrynLee was at Primary's the first time. It was so nice to see them and to see their baby doing so well! I have a love/hate relationship with that hospital! I hate it because I see so many sick kids when I'm there.. Some obviously sick, some leave you guessing, but all the same, sick kids! But I love that hospital because I know how many of those sick kids get better there! I know how many miracles happen there every single day! When we were there for BrynLee's initial stay every time I'd hear a helicopter come in I'd just cringe because I knew it was another sick baby, another premature baby!
BrynLee's surgery went well, and fast! It was only about an hour and 20 minutes! Short compared to her first surgery! While we were in the waiting room a surgeon came in and pulled a family aside into the consultation room.. I looked at my husband and said, "That can't be good if they take them in the consultation room!" Dr. Wallis came in about 10 minutes later and asked us to come into the consultation room next them! My belly knotted up instantly! My husband had gone to the bathroom so I was alone, I followed him into the room and I couldn't even sit down! He said he wanted to wait for my husband and when he saw the look on my face I think he knew what I was thinking! He said, "The surgery went fine and BrynLee is doing great!" He knew what I needed to hear! He told us that he scoped her previous repair and everything looked great and healed perfectly! She was even holding small amounts of urine! We were very pleased to say the least! : )
They took me back to recovery about 10 minutes later and my husband joined us about 20 minutes after that! BrynLee was very sleepy and fussy, but she was doing great! I got her to eat a little bit of pedialyte and her vitals all looked great, so about 2 hours after surgery we headed home!
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| In Dr. Wallis' office! |
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| Laying on the bed at the room the night before surgery! |
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| Aren't these little gowns so cute! |
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| Just out of surgery! |
Fighting Infections
BrynLee was only home a week before she got her first infection. We are seeing a pediatrician in Twin Falls so that we don't have to drive down to SLC for everything that goes wrong! Dr. Hansen is very good and he works closely with Dr. Wallis, which I absolutely LOVE! It shows that he really does want the best for BrynLee!
I took BrynLee to Twin to see Dr. Hansen and we got a urine sample (which is pretty tricky with her!) and sure enough it was a UTI.. This was our first experience with a UTI so we were a little clueless, but we're getting alot better at knowing what's going on with her! He put her on some antibiotics and sent us home! I could tell she was feeling better a few days later and life went back to "normal!"
2 weeks later was the county fair! Our oldest son was taking his first hog for 4-H so this was all new to us! He had already missed 3 weeks of working with his hogs because of our stay at Primary Children's with BrynLee so we really were just "winging" it! We had to stay at the fairgrounds in a motorhome because our house is 40 miles away, so it was like camping for the kids! Camping in town! :) Thankfully, the hospital is only a block away from the fairgrounds!
BrynLee's last dose of antibiotic was 2 days before fair. The first day she was really good, but the second day of fair she was fussy! It was hot and she was miserable! I really just thought it was the change, not being home, and the heat, but that 2nd night she woke up and had a fever! I've learned to just pack a thermometer with her everywhere we go, so I took her temp and it was 103.7! For a 6 week old baby, that is very high! I didn't even get dressed, just slipped on my flip flops, wrapped her in a blanket and told my husband I was going to the hospital! It was 1:30AM...
I was very surprised at the hospital how prompt and genuinely worried they were! I guess it was her condition, but I've been in the hospital before with a baby that has a high fever and they're usually looking at you like, "Seriously? You're here for this!?!" But the nurses and the doctor that night were all amazing! I didn't have to wait for anything! Labs came right in, then x-ray, then we got a urine sample and next thing I knew the doc was saying her UTI was getting worse! The previous 2 weeks of antibiotics did no good! They basically had held her off from getting any sicker, but didn't make her any better! So the 4 days after we stopped her meds, it just built up to the point where she now had a serious kidney infection! : (
They started an IV, pushed fluids and gave her a strong IV antibiotic and sent us back to the fairgrounds! They left the IV in and told me to get her to her pediatrician in Twin the next afternoon. By the time I got back to the motorhome it was 5AM.. She was finally asleep so I laid her in her bed and slept till 6:30. BrynLee got up, ate and I let my husband and son go take care of the pigs and when they got back I headed to my grandma's house (who lives close by) to catch up on some sleep and then she was going with me to the dr that afternoon!
When I headed to her house it was 8AM and that's what time the pediatrician's office opens so I called to get an appointment. The only thing they had was 9:15AM and 4PM. I know the hospital told me that afternoon, but looking at my baby, I knew we couldn't wait til 4PM so I told them I'd be there at 9:15. I still had to get ready and Twin is 40 minutes away! Let's just say I had to skip the shower part! : (
When we got to Twin BrynLee's temp had gone back up to 103.3.. Dr. Hansen took one look at her and said, "We're admitting her!" It was during her hospital stay that they found her hernias that she had repaired last month. That's another story!
We were there 3 days.. I missed my son showing his pig! I know he understood, but I still felt horrible!
Even when we got back I kept BrynLee at my grandma's house most of the time so she could continue to get better.
BrynLee is one tough little girl! Here are a few pictures of her during our 2nd hospital stay!
I took BrynLee to Twin to see Dr. Hansen and we got a urine sample (which is pretty tricky with her!) and sure enough it was a UTI.. This was our first experience with a UTI so we were a little clueless, but we're getting alot better at knowing what's going on with her! He put her on some antibiotics and sent us home! I could tell she was feeling better a few days later and life went back to "normal!"
2 weeks later was the county fair! Our oldest son was taking his first hog for 4-H so this was all new to us! He had already missed 3 weeks of working with his hogs because of our stay at Primary Children's with BrynLee so we really were just "winging" it! We had to stay at the fairgrounds in a motorhome because our house is 40 miles away, so it was like camping for the kids! Camping in town! :) Thankfully, the hospital is only a block away from the fairgrounds!
BrynLee's last dose of antibiotic was 2 days before fair. The first day she was really good, but the second day of fair she was fussy! It was hot and she was miserable! I really just thought it was the change, not being home, and the heat, but that 2nd night she woke up and had a fever! I've learned to just pack a thermometer with her everywhere we go, so I took her temp and it was 103.7! For a 6 week old baby, that is very high! I didn't even get dressed, just slipped on my flip flops, wrapped her in a blanket and told my husband I was going to the hospital! It was 1:30AM...
I was very surprised at the hospital how prompt and genuinely worried they were! I guess it was her condition, but I've been in the hospital before with a baby that has a high fever and they're usually looking at you like, "Seriously? You're here for this!?!" But the nurses and the doctor that night were all amazing! I didn't have to wait for anything! Labs came right in, then x-ray, then we got a urine sample and next thing I knew the doc was saying her UTI was getting worse! The previous 2 weeks of antibiotics did no good! They basically had held her off from getting any sicker, but didn't make her any better! So the 4 days after we stopped her meds, it just built up to the point where she now had a serious kidney infection! : (
They started an IV, pushed fluids and gave her a strong IV antibiotic and sent us back to the fairgrounds! They left the IV in and told me to get her to her pediatrician in Twin the next afternoon. By the time I got back to the motorhome it was 5AM.. She was finally asleep so I laid her in her bed and slept till 6:30. BrynLee got up, ate and I let my husband and son go take care of the pigs and when they got back I headed to my grandma's house (who lives close by) to catch up on some sleep and then she was going with me to the dr that afternoon!
When I headed to her house it was 8AM and that's what time the pediatrician's office opens so I called to get an appointment. The only thing they had was 9:15AM and 4PM. I know the hospital told me that afternoon, but looking at my baby, I knew we couldn't wait til 4PM so I told them I'd be there at 9:15. I still had to get ready and Twin is 40 minutes away! Let's just say I had to skip the shower part! : (
When we got to Twin BrynLee's temp had gone back up to 103.3.. Dr. Hansen took one look at her and said, "We're admitting her!" It was during her hospital stay that they found her hernias that she had repaired last month. That's another story!
We were there 3 days.. I missed my son showing his pig! I know he understood, but I still felt horrible!
Even when we got back I kept BrynLee at my grandma's house most of the time so she could continue to get better.
BrynLee is one tough little girl! Here are a few pictures of her during our 2nd hospital stay!
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| Shortly after being admitted |
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| She always like her face covered! |
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| They brought her toys the 2nd day because she was feeling better! They had to move her IV to her head after 6 veins ruptured, this one finally held! |
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| (3rd day!) I think this look says, "Ok, I wanna go home!" |
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| Finally, we're on our way home! |
Saturday, October 8, 2011
Pictures
Here are a few pictures of BrynLee while she was at Primary Children's Hospital in Salt Lake City, UT. I appologize for the low quality of the pictures as they were taken on cell phone!
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| Austyn with her new baby sissy just before surgery |
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| Koby with his new baby sissy just before surgery |
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| After surgery |
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| Trying to open her eyes! |
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| First moments off the vent! |
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| High flow oxygen |
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| Alert, happy baby! One week after surgery |
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| They put her on her belly for an ultrasound and she fell asleep so we left her like this and let her sleep! |
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| Mommy holding BrynLee! |
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| She was always covering her face and hiding! |
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| Picture taken on the way out the door to go home! |
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| The lovely "carbed" she had to use while she had her splints! |
BrynLee's First Surgery
BrynLee's first surgery (July, 1 2011, 2 days old) was a very long, invasive surgery! There were several procedures that needed done.. They had to close the bladder, pull the pubic symphisis bones together and suture, fix the ureters, put stints in the ureters that lead to tubes coming through the abdominal wall into bags, place a suprapubic catheter in her bladder, also coming through the abdominal wall, make her a new belly button, and close the hole in her belly! That is ALOT to do to a brand new baby.. It was a 5 hour surgery!
Dr. Wallis said when he got in there her bladder was smaller than he'd expected and her ureters had to be re-routed, but other than that, everything else went as expected! Because her bladder is so small, he isn't sure if it will ever grow with the rest of her body. If it doesn't, she will have to have multiple surgeries as she grows so they can go in a resize her bladder. They will take tissue from her small intestine to make a bigger bladder every couple of years. (This is only if her bladder doesn't grow with her, but we won't know if it's growing or not for at least 12-18 months) Most children with this condition suffer from incontinence. The lower sphincter muscle at the bottom of the bladder doesn't work correctly and they aren't able to acctually HOLD any urine, so rather than her bladder filling and her releasing it, like normal people do, she will leak constantly.
She had two braces around her legs, one around her calves and one around her thighs, that held her legs closed. This was to allow her pelvis and pubic bone to heal. They said that her pubic bone was so spread out that they couldn't get it closed all the way. Most of the time when they can't get it closed like that it will spread back open, so BrynLee will probably walk with a little bit of a waddle.
Overall her first surgery was a huge success! She had to have bilateral hernias repaired 2 months later and Dr. Wallis went in and scoped everything and said it's all looking good! The urethra is healed up and her bladder is holding small amounts of urine! (which is very good news!)
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| Headed to surgery |
Dr. Wallis said when he got in there her bladder was smaller than he'd expected and her ureters had to be re-routed, but other than that, everything else went as expected! Because her bladder is so small, he isn't sure if it will ever grow with the rest of her body. If it doesn't, she will have to have multiple surgeries as she grows so they can go in a resize her bladder. They will take tissue from her small intestine to make a bigger bladder every couple of years. (This is only if her bladder doesn't grow with her, but we won't know if it's growing or not for at least 12-18 months) Most children with this condition suffer from incontinence. The lower sphincter muscle at the bottom of the bladder doesn't work correctly and they aren't able to acctually HOLD any urine, so rather than her bladder filling and her releasing it, like normal people do, she will leak constantly.
She had two braces around her legs, one around her calves and one around her thighs, that held her legs closed. This was to allow her pelvis and pubic bone to heal. They said that her pubic bone was so spread out that they couldn't get it closed all the way. Most of the time when they can't get it closed like that it will spread back open, so BrynLee will probably walk with a little bit of a waddle.
Overall her first surgery was a huge success! She had to have bilateral hernias repaired 2 months later and Dr. Wallis went in and scoped everything and said it's all looking good! The urethra is healed up and her bladder is holding small amounts of urine! (which is very good news!)
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| Our precious BrynLee right out of recovery |
Friday, October 7, 2011
BrynLee's Condition
Bladder Exstrophy is a congenital anomality in which the urinary bladder is present outside the body. It is rare, occurring once every 50,000 live births with a 2:1 male:female ratio. The diagnosis involves a spectrum of anomalies of the lower abdominal wall, bladder, anterior bony pelvis, and external genitalia. It occurs due to failure of the abdominal wall to close during fetal development and results in protrusion of the posterior bladder wall through the lower abdominal wall.
Treatment is with surgical correction of the defect, but patients can still have long term issues with urinary tract infections and urinary incontinence.
The cause of bladder exstrophy is maldevelopment of the lower abdominal wall, leading to a rupture which causes the bladder to communicate with the amniotic fluid.
Modern therapy is aimed at surgical reconstruction of the bladder and genitalia, most often through a staged approach. The initial surgical management consists of bladder, posterior urethral and abdominal wall closure (with or without osteotomies). Bladder closure may be delayed if the bladder is deemed too small to close. The surgical management epispadius usually occurs at approximately 6–12 months of age. Reconstruction of the bladder neck is typically done at toilet training age (approximately age 4-5), once the child is able to and interested in participating in a bladder retraining program. In very carefully selected patients surgical management may be carried out in a single stage or in combined procedures.
Even with successful surgery, patients may have long-term problems with
Treatment is with surgical correction of the defect, but patients can still have long term issues with urinary tract infections and urinary incontinence.
The cause of bladder exstrophy is maldevelopment of the lower abdominal wall, leading to a rupture which causes the bladder to communicate with the amniotic fluid.
Modern therapy is aimed at surgical reconstruction of the bladder and genitalia, most often through a staged approach. The initial surgical management consists of bladder, posterior urethral and abdominal wall closure (with or without osteotomies). Bladder closure may be delayed if the bladder is deemed too small to close. The surgical management epispadius usually occurs at approximately 6–12 months of age. Reconstruction of the bladder neck is typically done at toilet training age (approximately age 4-5), once the child is able to and interested in participating in a bladder retraining program. In very carefully selected patients surgical management may be carried out in a single stage or in combined procedures.
Even with successful surgery, patients may have long-term problems with
- incontinence
- urinary reflux
- repeated urinary tract infections
- bladder adenocarcinoma
- colonic adenocarcinoma
- self-image
- uterine prolapse
Meet BrynLee
BrynLee Hutchison is the daughter of Jocko and Chelsey Hutchison of Malta, ID, Granddaughter to Delbert and JoDene Hutchison also of Malta, ID, and Russ and Karla Taylor of Burley, ID, and Great Granddaughter to Claretta Shaffer and Lenny Jones, also of Burley, ID.
BrynLee was born with a rare condition called Bladder Exstrophy in which her bladder and abdomen did not form correctly in utero. BrynLee had her first surgery at 2 days old and has more surgeries ahead of her to complete the repair.
BrynLee is currently being treated by a wonderful team of doctors at Primary Children's Hospital in SLC, UT and has recieved wonderful care. There is a more experienced Bladder Exstrophy surgeon in Boston, Mass named Dr. Joseph Borer. Our goal is to help Jocko and Chelsey get BrynLee to Boston to see Dr. Borer in the next 6 months!
BrynLee was born with a rare condition called Bladder Exstrophy in which her bladder and abdomen did not form correctly in utero. BrynLee had her first surgery at 2 days old and has more surgeries ahead of her to complete the repair.
BrynLee is currently being treated by a wonderful team of doctors at Primary Children's Hospital in SLC, UT and has recieved wonderful care. There is a more experienced Bladder Exstrophy surgeon in Boston, Mass named Dr. Joseph Borer. Our goal is to help Jocko and Chelsey get BrynLee to Boston to see Dr. Borer in the next 6 months!
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