I made this for Zoe for her upcoming 4th birthday. I cried the entire time putting this together.
Friday, January 29, 2016
Thursday, January 28, 2016
Been almost a year....
Its been almost a year since my last post. I barely have time to do anything for myself these days, so writing has been put on the back burner. But that's a good thing. Since around June, Zoë has been doing so well. Her weird GI issues haven't resolved, but I have noticed a trend. When she's not feeling well, is when she has a flare up. Its bizarre. But what else can we do? She's had numerous blood draws and a MRI done and they all say her liver is fine and she's fine. She just has a dilated bile duct. Blame it on Heterotaxy. That's always the case where there is no definite answers. But to have a child who poops white, it's just weird.
Since June, we have lived a normal life of a family of four. Zander started Kindergarten in the fall, in the gifted program and is doing so well. Zoë is doing so good at school too. Most people don't believe me she's just three years old! The kids keep us busy with sports. They are both in Jujitsu and gymnastics. Zoë is also in ballet and we recently signed up the kids for T-ball with some of our neighbors.
Two weekends ago we were supposed to attend one of my best friend's son's 2nd birthday party. Last year when we attended, we were in the hospital that evening for the white stool. Well Zoë started complaining that her arm was on fire on Friday night. I looked at it and it appeared to look like an allergic reaction. So we gave some children's benadryl and hoped it would clear up. The next morning Mike left for work (always the case when something happens to Zoë) and I ended up calling the pediatrician and describing it. They wanted to see her. I should have just used my instincts and forgoed the pediatrician and just went straight to the ER. After an hour at the pediatrician's office (due to waiting) she told us it appeared to be a bacterial infection and we needed to go to the ER right away. Mom's instincts are always on point. This scared me because the pediatrician was really concerned. Remember Zoë is polysplenic, but they all don't work. Spleens help us fight off bacterial infections. So if hers didn't work, what was going to happen? We got to the ER and she was happy as a clam (always the case). After hours of being there and testing, they determined it didn't get into her bones and was just a localized infection. She had cellulitis. So they gave her some meds in her IV and kept her overnight. They discharged us on Sunday evening as there was nothing more to do and they didn't want us to have her catch anything else. This past Tuesday is her last day of the meds. She has taken her meds like a champ! While we were admitted we were watching Taylor Swift (she loves Taylor Swift) and then I put on some Katy Perry. Well "Hear Me Roar" came on and she has consistently listened to that song since. She asks me "Mama, I want to look like her when I'm bigger", "Can I get her shirt". "I'm a champion just like her". I told her she's going to be bigger than Katy Perry and you're more of a champion than Katy Perry. I filmed her last week doing this. She's bigger than life sometimes and I truly think she's going to do wonderful things in her life when she's older.
She's turning 4 on February 5th. Can you believe this?????? Where has the time gone??? I haven't read my old posts in such a long time. I remember all the gloom and doom from 4-4.5 years ago. All my prelabor admittances. All the scare and worry. Hugging Zander ever so tightly. Mike and I have been in and out of the hospital since October 2011. Some days have been extremely scary, but she's thriving and doing so well.
February 5, 2012. Welcome to the World Zobo!
Happy 1st Birthday sweet heart! We threw her a very big party!
And then....that evening after her party we were admitted.
Happy 2nd Birthday!
Happy 3rd Birthday!
This last admittance I had major mom guilt. Mike and I decided to hold back on the kids birthday parties until they were in Kindergarten and just keep the parties with the immediate family and god parents. I married into a very large family (who are all so great), so having family at our home parties, is a large enough group as it is. But with having this bacterial infection and all the doctors being worrisome, it got me thinking. I can't hold back on this stuff. She deserves to have her girlfriends from school, ballet class, neighbors and family friends there. Her life deserves to be celebrated in so many ways. I know I shouldn't have any guilt, but this life can be incredibly hard sometimes. Mike and I have lost friends along the way of this journey. Whether its just distance, we've changed or if people are afraid to be apart of our lives, who knows. I can't tell you how many times people who I thought were good friends, turned out to be just social acquaintances. How you do not ask how your daughter is doing when she's in the hospital? Its just odd to me. Especially how now social media, texting, etc. is so easily accessible. I've just realized some of these friendships are just one-sided. And that's perfectly fine. I'm just a person with an extremely big heart and would do anything for anyone that needed help. Even if its just texting to make sure all is ok. I wear my heart on my sleeve. I'm going to tell you something though, this life can be hard.
The truth is, I have no idea how I manage to keep it all together. But I have no choice. I fight because Zoe needs me to fight. I keep going because if Mike and I don't, who will? I put my own needs aside because I value Zoe's life more than my own. Hospital life is exhausting and draining. And we're one of the lucky ones in this Heterotaxy journey because she's not as complex as some of her other friends are.
Until next time....
xo
Since June, we have lived a normal life of a family of four. Zander started Kindergarten in the fall, in the gifted program and is doing so well. Zoë is doing so good at school too. Most people don't believe me she's just three years old! The kids keep us busy with sports. They are both in Jujitsu and gymnastics. Zoë is also in ballet and we recently signed up the kids for T-ball with some of our neighbors.
Two weekends ago we were supposed to attend one of my best friend's son's 2nd birthday party. Last year when we attended, we were in the hospital that evening for the white stool. Well Zoë started complaining that her arm was on fire on Friday night. I looked at it and it appeared to look like an allergic reaction. So we gave some children's benadryl and hoped it would clear up. The next morning Mike left for work (always the case when something happens to Zoë) and I ended up calling the pediatrician and describing it. They wanted to see her. I should have just used my instincts and forgoed the pediatrician and just went straight to the ER. After an hour at the pediatrician's office (due to waiting) she told us it appeared to be a bacterial infection and we needed to go to the ER right away. Mom's instincts are always on point. This scared me because the pediatrician was really concerned. Remember Zoë is polysplenic, but they all don't work. Spleens help us fight off bacterial infections. So if hers didn't work, what was going to happen? We got to the ER and she was happy as a clam (always the case). After hours of being there and testing, they determined it didn't get into her bones and was just a localized infection. She had cellulitis. So they gave her some meds in her IV and kept her overnight. They discharged us on Sunday evening as there was nothing more to do and they didn't want us to have her catch anything else. This past Tuesday is her last day of the meds. She has taken her meds like a champ! While we were admitted we were watching Taylor Swift (she loves Taylor Swift) and then I put on some Katy Perry. Well "Hear Me Roar" came on and she has consistently listened to that song since. She asks me "Mama, I want to look like her when I'm bigger", "Can I get her shirt". "I'm a champion just like her". I told her she's going to be bigger than Katy Perry and you're more of a champion than Katy Perry. I filmed her last week doing this. She's bigger than life sometimes and I truly think she's going to do wonderful things in her life when she's older.
She's turning 4 on February 5th. Can you believe this?????? Where has the time gone??? I haven't read my old posts in such a long time. I remember all the gloom and doom from 4-4.5 years ago. All my prelabor admittances. All the scare and worry. Hugging Zander ever so tightly. Mike and I have been in and out of the hospital since October 2011. Some days have been extremely scary, but she's thriving and doing so well.
February 5, 2012. Welcome to the World Zobo!
Happy 1st Birthday sweet heart! We threw her a very big party!
And then....that evening after her party we were admitted.
Happy 2nd Birthday!
Happy 3rd Birthday!
The truth is, I have no idea how I manage to keep it all together. But I have no choice. I fight because Zoe needs me to fight. I keep going because if Mike and I don't, who will? I put my own needs aside because I value Zoe's life more than my own. Hospital life is exhausting and draining. And we're one of the lucky ones in this Heterotaxy journey because she's not as complex as some of her other friends are.
So with that, Miss Zoe is getting a princess party. She specifically requested an Ariel cake as she now loves Ariel. Mom and Dad are surprising her with a face painter and two special ladies are making their appearance, Ariel and Cinderella. She's going to freak! And this will make her even more excited for our upcoming family vacation to Walt Disney World.
In the next few weeks starts all our specialist visits for check ups. And I hope 2016 is an even healthier year than 2015 was. Until next time....
xo
Thursday, March 5, 2015
Our ongoing and everlasting journey....
Our ongoing and everlasting journey....
Tuesday we met with an immunologist for the first time at Lurie's. Why we haven't seen one yet, who knows, I'm just glad we have him on our team. Zoe has chronic fevers, which seem to appear every 2 weeks or so. Some low fevers, some high and never has any other symptoms that show that she could be getting sick. No runny noses, no cough, not lethargic, etc. We are stocked with Tylenol and Motrin and quite honestly, I don't want her to survive on that stuff. It was a very long appointment going over her history and every nook and cranny you could think of. They want more labs on her to see if her immune system is working. We've always assumed its not due to her being polysplenic, but now they will test to see if her spleens work. This is the Howell Jolly Body Test. If her immune system comes back "normal" we still have to keep her on the daily penicillin as this test isn't very accurate, but then we will move to on to Rheumatology to see if there is any inflammation going on in her bones (i.e. arthritis). If it comes back abnormal, then we will continue testing for autoimmune issues. They also want us to consider doing some genetic testing for fever disorders. As we were going back to Lurie's on Wednesday, I requested that we do all these labs at the same time as GI's work orders.
Yesterday, just Zoe and I headed back to Lurie's.
We spent the morning at the hospital (getting 6 vials of blood and a belly ultrasound). The ultrasound was nearly 90 minutes long (and she was a trooper). Thank goodness for Ipads and televisions in each procedure room. The tech couldn't get all of the proper shots (and I now realize why and I will bring that up in a minute)....
Instead of driving and dropping Zoe off and returning to work, I decided she could come to work with me for a few hours. She had a complete ball at my work. She pretended to "work" on the computer, try to fit herself in a redweld/expandable folder, took some trial exhibit stickers and put them on paper, and of course watched Frozen while doing all of this. I needed to come in to work to catch up on some things. She was a very good paralegal student. Not to mention she loved all the attention my coworkers gave her.
We received our GI lab results and ultrasound results today. Zoe's GI doctor emailed us her results.....long story short her liver panel came back normal and her ultrasound showed an enlarged bile duct. They want to do an MRCP (This is an MRI that focuses on the bile duct, gall gladder and pancreas and creates a 3-D reconstruction).
Her ultrasound in January did not show an enlarged bile duct. His concern is for a condition known as choledochal cyst. This is a situation where there is malformation of the bile duct during development. Now it may come back that it is normal, but if it is a choledochal cyst, it may require treatment for her long term (meaning years) health. Sometimes, it can cause intermittent bile duct obstruction that requires some drainage. He doesn't believe she is any immediate danger. Her liver numbers are reassuring, but we need to determine the cause of the enlarged bile duct (hence causing her pale stools).
I'm just glad Mike and I have been persistent on the issue of white and pale stool....it just isn't normal.
I'm mentally and physically drained. These hospital appointments suck the life out of you. We have had appointments since mid January. On top of working full time, taking care of the house and the family, I have no idea how I (we) function on a daily basis. I need sleep (and coffee and wine). So we still have more tests....
Till next time.
Tuesday we met with an immunologist for the first time at Lurie's. Why we haven't seen one yet, who knows, I'm just glad we have him on our team. Zoe has chronic fevers, which seem to appear every 2 weeks or so. Some low fevers, some high and never has any other symptoms that show that she could be getting sick. No runny noses, no cough, not lethargic, etc. We are stocked with Tylenol and Motrin and quite honestly, I don't want her to survive on that stuff. It was a very long appointment going over her history and every nook and cranny you could think of. They want more labs on her to see if her immune system is working. We've always assumed its not due to her being polysplenic, but now they will test to see if her spleens work. This is the Howell Jolly Body Test. If her immune system comes back "normal" we still have to keep her on the daily penicillin as this test isn't very accurate, but then we will move to on to Rheumatology to see if there is any inflammation going on in her bones (i.e. arthritis). If it comes back abnormal, then we will continue testing for autoimmune issues. They also want us to consider doing some genetic testing for fever disorders. As we were going back to Lurie's on Wednesday, I requested that we do all these labs at the same time as GI's work orders.
Yesterday, just Zoe and I headed back to Lurie's.
We spent the morning at the hospital (getting 6 vials of blood and a belly ultrasound). The ultrasound was nearly 90 minutes long (and she was a trooper). Thank goodness for Ipads and televisions in each procedure room. The tech couldn't get all of the proper shots (and I now realize why and I will bring that up in a minute)....
Instead of driving and dropping Zoe off and returning to work, I decided she could come to work with me for a few hours. She had a complete ball at my work. She pretended to "work" on the computer, try to fit herself in a redweld/expandable folder, took some trial exhibit stickers and put them on paper, and of course watched Frozen while doing all of this. I needed to come in to work to catch up on some things. She was a very good paralegal student. Not to mention she loved all the attention my coworkers gave her.
We received our GI lab results and ultrasound results today. Zoe's GI doctor emailed us her results.....long story short her liver panel came back normal and her ultrasound showed an enlarged bile duct. They want to do an MRCP (This is an MRI that focuses on the bile duct, gall gladder and pancreas and creates a 3-D reconstruction).
Her ultrasound in January did not show an enlarged bile duct. His concern is for a condition known as choledochal cyst. This is a situation where there is malformation of the bile duct during development. Now it may come back that it is normal, but if it is a choledochal cyst, it may require treatment for her long term (meaning years) health. Sometimes, it can cause intermittent bile duct obstruction that requires some drainage. He doesn't believe she is any immediate danger. Her liver numbers are reassuring, but we need to determine the cause of the enlarged bile duct (hence causing her pale stools).
I'm just glad Mike and I have been persistent on the issue of white and pale stool....it just isn't normal.
I'm mentally and physically drained. These hospital appointments suck the life out of you. We have had appointments since mid January. On top of working full time, taking care of the house and the family, I have no idea how I (we) function on a daily basis. I need sleep (and coffee and wine). So we still have more tests....
Till next time.
Friday, February 20, 2015
Potty Patrol
We've received a lot of messages in the last few weeks about Zoë and how she is doing. Well other than turning 3 years old, repeating Frozen lines and songs, and making her brother go crazy, she's doing well. But.....she's still producing white and pale colored stools. After we saw GI and started the probiotic, things seemed to be getting better for nearly a week. When we went back to the hospital to visit her pediatric surgeon, she started back up with the white chalky stool. We are in communication with both teams, her Pediatric Surgery team and her GI team. Pediatric Surgery believes its her diet, that she's consuming too many bland and colorless foods and no fruits or vegetables. GI used to think it was a gut infection, but now thinks its more of a function of bile excretion. He does not think it has anything to do with her diet. We see two of the top doctors in those departments and they both don't agree on the situation. However, they both have assured me that they don't feel that this is an emergency situation and that as her liver panels, ultrasounds, x-rays all appear to be normal, that we shouldn't worry.
How can we as parents not worry? White stool is NOT NORMAL! If its not her liver and its not a gut infection, what is causing this? Even if its a benign reason, there has to be an explanation. After we left the NICU, we were told to watch out for black tarry stool and white stool. These two (2) stools are big fat No No's with a duodenal atresia repair.
We are going in for more ultrasounds, hopefully next week. I also scheduled a second opinion with another children's hospital. We are just wanting to make sure we are doing everything possible. We are just nervous that something is being missed and something detrimental could ultimately happen. Its hard not to think the worst in this journey. But other than her magical poop, she's acting totally normal (which is why the teams aren't worried at this point).
So in the upcoming month we are also adding Immunology to our team. We hopefully can pinpoint as to why she gets chronic fevers of 101-103 every two weeks, but no other symptoms. This has been an ongoing problem since she was born.
Our lives are spent driving back and forth to the hospital. My vacation days are not spent doing anything fun. Although our journey has seemed to be easier than from 2011-2013, we're still getting a lot of unanswered questions.
Here are some pictures from her 3 year old FROZEN birthday. Her cake was done by Betty June's. We love the baker and her husband! They donated her 1st birthday cake from Icing Smiles. I have hired her to do the kids birthdays ever since. Not only are they amazing, they taste delicious.
As always, thanks for the support! xo
How can we as parents not worry? White stool is NOT NORMAL! If its not her liver and its not a gut infection, what is causing this? Even if its a benign reason, there has to be an explanation. After we left the NICU, we were told to watch out for black tarry stool and white stool. These two (2) stools are big fat No No's with a duodenal atresia repair.
We are going in for more ultrasounds, hopefully next week. I also scheduled a second opinion with another children's hospital. We are just wanting to make sure we are doing everything possible. We are just nervous that something is being missed and something detrimental could ultimately happen. Its hard not to think the worst in this journey. But other than her magical poop, she's acting totally normal (which is why the teams aren't worried at this point).
So in the upcoming month we are also adding Immunology to our team. We hopefully can pinpoint as to why she gets chronic fevers of 101-103 every two weeks, but no other symptoms. This has been an ongoing problem since she was born.
Our lives are spent driving back and forth to the hospital. My vacation days are not spent doing anything fun. Although our journey has seemed to be easier than from 2011-2013, we're still getting a lot of unanswered questions.
Here are some pictures from her 3 year old FROZEN birthday. Her cake was done by Betty June's. We love the baker and her husband! They donated her 1st birthday cake from Icing Smiles. I have hired her to do the kids birthdays ever since. Not only are they amazing, they taste delicious.
As always, thanks for the support! xo
Monday, January 26, 2015
GI update
Another long afternoon at Lurie's. This time we brought Zander so he didn't feel like we were leaving him behind. Last week really took a toll on him. We were looking at Zoë's baby pictures over the weekend and he teared up. He told me "mama I missed Zoë". It broke my heart. My little boy shouldn't have to deal with these type of emotions at 4 years old.
We met with our GI specialist. He was great and we appreciated that he sees another Heterotaxy child. He asked us a gazillion questions, looked over her massive chart, and feels she's not backed up enough to make her produce black or white stools. He said its a gut infection. Now the funny thing is that all the doctors in the ER (including pediatric surgery fellows) said it wasn't a gut infection or a virus. How the doctor explained it to us was that the bacteria in the intestines was eating away at the bile, hence the white stool. He doesn't want us on the stool softener unless we feel she needs it. He wants us to try some probiotics to see if this will help. Her stool seems to be getting better color. It's still chalky and pale but it's no longer white.
So hopefully this issue resolves itself soon or we'll be back to the drawing board. We see Pediatric Surgery in 2.5 weeks, her pediatrician in 3 weeks and her immunologist in a month. Lots of appointments. It's quite sad that the receptionists in the main lobby know you by name. At least all the staff is so friendly to make our visits a little bit easier.
Thank you for the out pour of support! The Facebook comments, texts and emails really mean a lot to Mike and I. I'm one of those people that need to talk about our situation or else I self-combust. I know some people don't know what to do when a friend is hurting, but just checking in is the best medicine for a family going through a medical journey.
My Heterotaxy mamas really have helped in the last week as well. Social media has some major advantages. It brings people together who have similar situations.
We're gearing up for CHD awareness week! It's February 7th - 14th! So please wear red for all the heart warriors!
We met with our GI specialist. He was great and we appreciated that he sees another Heterotaxy child. He asked us a gazillion questions, looked over her massive chart, and feels she's not backed up enough to make her produce black or white stools. He said its a gut infection. Now the funny thing is that all the doctors in the ER (including pediatric surgery fellows) said it wasn't a gut infection or a virus. How the doctor explained it to us was that the bacteria in the intestines was eating away at the bile, hence the white stool. He doesn't want us on the stool softener unless we feel she needs it. He wants us to try some probiotics to see if this will help. Her stool seems to be getting better color. It's still chalky and pale but it's no longer white.
So hopefully this issue resolves itself soon or we'll be back to the drawing board. We see Pediatric Surgery in 2.5 weeks, her pediatrician in 3 weeks and her immunologist in a month. Lots of appointments. It's quite sad that the receptionists in the main lobby know you by name. At least all the staff is so friendly to make our visits a little bit easier.
Thank you for the out pour of support! The Facebook comments, texts and emails really mean a lot to Mike and I. I'm one of those people that need to talk about our situation or else I self-combust. I know some people don't know what to do when a friend is hurting, but just checking in is the best medicine for a family going through a medical journey.
My Heterotaxy mamas really have helped in the last week as well. Social media has some major advantages. It brings people together who have similar situations.
We're gearing up for CHD awareness week! It's February 7th - 14th! So please wear red for all the heart warriors!
Friday, January 23, 2015
Faith makes things possible, not easy...
My mind has been racing for the last week. I haven't slept and sometimes I wonder how I haven't been admitted to the crazy house with all that goes on in our lives. For the most part, our lives have been normal. But then again, we don't know any other way of living then always having doctors, specialists and therapists involved in our daily lives.
Zoe, I think she's going to send me to an early grave with all her scares. I don't post that much anymore about all the hospital visits or anything of the like because I feel like a broken record. I've just reached out to friends and family when I need to vent or cry. We've added another two specialists to her team, so she now sees Cardiology, Pediatric Surgery, GI, Endocrine and Immunology.
Zoe had her duodenum repaired at 5 days old. When we left the NICU we were told to watch out for black tarry stool and white stool. Well earlier in the fall for about two (2) weeks, she had black tarry stool. You basically needed a knife to scratch it off. Black stool usually is an indicator that there is blood in the stool. We had it tested, and there was no blood. We had to take it back a few times in order to make sure everything was ok. Luckily it was.
This past Saturday we went and celebrated one of my best friend's son's 1st birthday party. The kids had a blast, running around, jumping in the bounce house, acting like a normal 2 and 4 year old. Zoe has been potty trained since September and I can honestly say she does amazing at wiping her little tushy, so I'm not always in the bathroom with her. Saturday night she wanted my help. I looked in the toilet and called Mike over immediately. Pure white chalky stool. Mike's eyes got big and said to call Children's immediately. White stool is an indicator that there could be liver failure or a bowel obstruction. For a girl who already had a bowel obstruction, this is why we were concerned. The ER, pediatric surgery and every other doctor that examined her were concerned by the color. She was also distended and complained that her tummy hurt. X-ray, Ultrasound, blood work came out perfect. They told us it was not a virus or a gut infection. So what is it then??? They sent us home. We followed up with them for the next 48 hours because the white stool continued. Mike and I didn't feel comfortable with her having white stool for 3 days (mind you she had no fever, no vomit, no diarrhea, no other symptoms other than loss of appetite and being pale) so we took her back to the ER on Monday night to redo the tests. The tests came back even better than they were on Saturday. So they sent us home. We were on the phone with Pediatric Surgery and our pediatrician all week long. We saw our surgeon last night. She believes Zoe is backed up in stool and that the bile is being reabsorbed, hence making it white. She has never seen this before, but there is logic to it. So we will administer some meds to help get her bowels moving and hope for brown normal stool. I"m a little skeptical about this as she's never seen this, but I trust our doctor. We see GI on Monday and hopefully the stool is back to normal or we have another plan in site. So far its nearly 7 days of white stool, which is not normal!
I cried so much this week, for the pain of my daughter, for this journey, for not having answers and then sweet Zander, who's so concerned about his little sister. He's had to grow up so fast at such a young age. He's starting to act out when she's gone for hours after hours. My heart just breaks because he knows no different. But when she's not in school with him, or at the doctors for hours and hours, his world is just turned upside down. He knows she has an illness and a special heart but doesn't truly understand it. They have such an amazing bond (when they aren't trying to kill eachother). This week Mike and I both were at the hospital together because they were concerned it could be her liver. Normally we try to have one of us with Zander, and one with Zoe at the hospital and then switch. But this week, we were too nervous.
We have so many appointments in the next few weeks and then in March and May for her other specialists. For now, I hope our ER visits are not any time soon because her poor little hands and arms can't take anymore pokes or prods. She's bruised so badly because they miss her IV's so much. She's much older and more aware of her surroundings. She doesn't really have the "White Coat Syndrome" anymore (not afraid of doctors wearing white coats) but does hate when she sees the needles.
This week has played on my sanity. I'm so thankful for the small gestures of friends (like dinner). We haven't really been home this week due to the hospital and its the last thing on our minds.
Tonight we're taking the kids to see Frozen On Ice and help to put some smiles back in the kids!
Thank you for your support as always and lets pray for normal stool!
xo
Zoe, I think she's going to send me to an early grave with all her scares. I don't post that much anymore about all the hospital visits or anything of the like because I feel like a broken record. I've just reached out to friends and family when I need to vent or cry. We've added another two specialists to her team, so she now sees Cardiology, Pediatric Surgery, GI, Endocrine and Immunology.
Zoe had her duodenum repaired at 5 days old. When we left the NICU we were told to watch out for black tarry stool and white stool. Well earlier in the fall for about two (2) weeks, she had black tarry stool. You basically needed a knife to scratch it off. Black stool usually is an indicator that there is blood in the stool. We had it tested, and there was no blood. We had to take it back a few times in order to make sure everything was ok. Luckily it was.
This past Saturday we went and celebrated one of my best friend's son's 1st birthday party. The kids had a blast, running around, jumping in the bounce house, acting like a normal 2 and 4 year old. Zoe has been potty trained since September and I can honestly say she does amazing at wiping her little tushy, so I'm not always in the bathroom with her. Saturday night she wanted my help. I looked in the toilet and called Mike over immediately. Pure white chalky stool. Mike's eyes got big and said to call Children's immediately. White stool is an indicator that there could be liver failure or a bowel obstruction. For a girl who already had a bowel obstruction, this is why we were concerned. The ER, pediatric surgery and every other doctor that examined her were concerned by the color. She was also distended and complained that her tummy hurt. X-ray, Ultrasound, blood work came out perfect. They told us it was not a virus or a gut infection. So what is it then??? They sent us home. We followed up with them for the next 48 hours because the white stool continued. Mike and I didn't feel comfortable with her having white stool for 3 days (mind you she had no fever, no vomit, no diarrhea, no other symptoms other than loss of appetite and being pale) so we took her back to the ER on Monday night to redo the tests. The tests came back even better than they were on Saturday. So they sent us home. We were on the phone with Pediatric Surgery and our pediatrician all week long. We saw our surgeon last night. She believes Zoe is backed up in stool and that the bile is being reabsorbed, hence making it white. She has never seen this before, but there is logic to it. So we will administer some meds to help get her bowels moving and hope for brown normal stool. I"m a little skeptical about this as she's never seen this, but I trust our doctor. We see GI on Monday and hopefully the stool is back to normal or we have another plan in site. So far its nearly 7 days of white stool, which is not normal!
I cried so much this week, for the pain of my daughter, for this journey, for not having answers and then sweet Zander, who's so concerned about his little sister. He's had to grow up so fast at such a young age. He's starting to act out when she's gone for hours after hours. My heart just breaks because he knows no different. But when she's not in school with him, or at the doctors for hours and hours, his world is just turned upside down. He knows she has an illness and a special heart but doesn't truly understand it. They have such an amazing bond (when they aren't trying to kill eachother). This week Mike and I both were at the hospital together because they were concerned it could be her liver. Normally we try to have one of us with Zander, and one with Zoe at the hospital and then switch. But this week, we were too nervous.
We have so many appointments in the next few weeks and then in March and May for her other specialists. For now, I hope our ER visits are not any time soon because her poor little hands and arms can't take anymore pokes or prods. She's bruised so badly because they miss her IV's so much. She's much older and more aware of her surroundings. She doesn't really have the "White Coat Syndrome" anymore (not afraid of doctors wearing white coats) but does hate when she sees the needles.
This week has played on my sanity. I'm so thankful for the small gestures of friends (like dinner). We haven't really been home this week due to the hospital and its the last thing on our minds.
Tonight we're taking the kids to see Frozen On Ice and help to put some smiles back in the kids!
Thank you for your support as always and lets pray for normal stool!
xo
Thursday, May 15, 2014
Heterotaxy Awareness
Good afternoon! Its been months since I last updated the blog. Life has been BUSY for me. Work has been crazy and then just being a normal family of 4, leaves me zero time to actually just sit down and write.
Zoe has been doing AMAZING. Can you believe she's 2?!?!? A few pictures from her February celebration.
And how can I not include my handsome son, who's 3.5?
Zoeloves is obsessed with Frozen. She sings screams "Let it Go" every day. She really believes she's a princess (which she is :) ). She picks out her own outfit, purse, bracelet and bows. LOVES shoes. She may own more clothes than me. Loves her nails painted. She's 2 but going on 16. Her vocabulary has increased. I love being able to have conversations with my two kiddos. So overall, she's nothing short than a Miracle. Never in a million YEARS did I think we would be at this point in our lives. Yes we still have doctor appointments and some therapy appointments, but this is a walk in the park compared to 2011-June 2013. We have her cardiology appointment on May 28th. Although I know her heart is healed (although anatomocially different), I still get nervous for this appointment.
Zoe has been doing AMAZING. Can you believe she's 2?!?!? A few pictures from her February celebration.
And how can I not include my handsome son, who's 3.5?
Easter 2014
So I'm sure most of you are wondering how Zoe has been doing medically? Well since June 2013, we have had only 1 hospital stay (thank the Lord). In December she caught RSV and we had a few day stay at Children's. She still gets Phantom Fevers bi-weekly. Its very frustrating to say the least. She will have a fever of 100-102 and show no other symptoms. She'll be running around antagonizing her brother, eat, drink and act normal. Luckily they last only a day or two and then breaks. We experienced one last night, and today she's just fine. Makes 0 sense to me. She started occupational therapy in January and is loving every minute of it.
Zoe
I wanted to share more good news. Another Heterotaxy organization started up, Heterotaxy Connection. Its an amazing organization reaching out to families who are currently going through this journey. Please go and navigate the website. Its full of great resources!
Illinois granted the Proclamation that now every May 4th is Heterotaxy Awareness Day! So exciting for our family and all the other families affected with this illness. A ton of the parents have worked hard on the other state proclamations and we all celebrated together in person and via social media on May 4th.
I was so fortunate to meet the three other families. One of the mothers has been such a great friend throughout this journey (actually one of the Founders of Heterotaxy Connection). She found me when Zoe was in the NICU. Her daughter, Hallie (her page Helping Hallie) was at Childrens at the same time. So Hallie's mom, Necia, and I figured out a location to meet the other families. Here are some of the photos from this great day courtesy of Cute As A Button Photography
Heterotaxy Warriorettes (Zoe, Hallie and Emma)
Amazing Mothers and their Warriors (L to R: Hallie, Zoe, Emma and Alex)
The Illinois Families
My Precious Family
I apologize that there are so few blog posts, but honestly we're just a normal family of 4 with two working parents with two crazy toddlers. And I wouldn't change it for the world :)
Till next time.
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