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.
Thursday, September 19, 2013
1 Year Surgiversary
I've been meaning to write for some time, and I just haven't had an opportunity to do so. I can't believe I haven't had a post in over 4 months. Time really goes by so fast.
I thoroughly enjoyed our summer with the kids. If you can call that cool weather summer! Zoe was so hesitant about swimming in the pool, but by the end of summer she never wanted to get out of the pool. She's grown up so fast and has become such a fun little girl to be around. She's currently getting her 2 year molars, so its been sleepless nights for me. You forget how good you feel after you slept through the night for so long, then all of a sudden "teeth" happen and you're like a zombie.
In July, we had professional photos taken by the wonderful photographer Felicia Reinhard. She's the founder of Inspiration Through Art (they also have a facebook page which Zoe was blogged about). It's a charity organization that finds children with illnesses and takes their photos and share's their story. It was a hot day in July. We went to a beach along Lake Michigan in the burbs. It was so peaceful and she captured the kids so well. Here are some of my favorites.
The summer weekends were filled with Zoo days, pool days, park days, play dates after play dates, all of which we didn't get to experience last year. We were a normal family and appreciated all the normal kid things to do! (of course I carried my lysol wipes every where I went and washed her hands after everything she touched!)
We took our first mini family vacation with family friends. Mike and I haven't had a vacation since our honeymoon (going on 5 years of marriage). Although we only headed 90 minutes north, it was a much needed getaway with the kids. Zander and Zoe loved the weekend. Here's a few shots of our weekend
We hit another big milestone. Zander started Pre-K 3. He's had some adjustment issues, but thoroughly enjoys school. His speech has picked up tremendously. He just seems so grown up lately. And he's obsessed with Super Heroes!
Zoe's health....
Well since May, we had 2 hospital stays, back to back for yet another set of viruses. Then Mike caught Meningitis from work, which put him into the hospital for a week. May to the end of June were spent at the hospital. Talk about loosing your sanity all over again. I feel like we'll permanently have outstanding medical bills year after year.
We also had to add another specialist to her team of doctors in August. Zoe has been blessed with some amazing surgeons and doctors (and nurses) and I'm so glad that every one on her team works together and are in constant communication with each other and Mike and I.
Knock on wood, Zoe has been hospital free since June. I can't believe we're going on 3 months of no stays. This is the longest stretch ever. The doctors have prepared us that this year will be worse than last year due to Zander being around 30 other kids daily. But we're a month into school, and so far we've been all healthy. I only hope and pray it continues for a bit longer. Its been so nice not having to take her in, look into her big blue eyes and see the fear she has from every poke and prod. She's much older and more aware of her surroundings. Not to mention it throws our household off. Zander misses his sister (they sleep in the same room), I have to figure out my work schedule, as does Mike, get our families involved, etc.
We're also hitting another HUGE milestone. September 25th is Zoe's Surgiversary. Its been 1 year since her open heart surgery. The scariest time in our lives. My birthday is the 23rd and last year, we went to church and had her anointed on my birthday. (Gosh I'm tearing up just writing this). Never in a million years did I imagine I would write how good she's doing a year later. Its been nearly 2 years since her diagnosis in utero. I feel like Mike and I have traveled a thousand miles and have dealt with so much stuff more than the average 30+ year old. (No wonder why I have more gray hair these days). She is so strong and I continue to thank God every night for my little miracles. Zoe's living proof of nothing short of a miracle. With everything that she has undergone, at the ripe old age of 19 months, she's so care free, loving, tender, smiley, and happy. Heterotaxy Syndrome is apart of her, but doesn't define her. No matter who enters our house, she runs up to them, puts her hands in the air and says "up". And she expects that attention or she'll cup your face and give you a kiss. Every morning she holds my hand in the car. She grabs my hand to walk down the hallway to get her diaper changed. She's nurturing. She has three (3) babies that she calls "Nae" (She has an Auntie Renee that goes by Auntie Nae). She puts "Nae" on her Minnie Mouse cart, takes her blankie, covers her baby(ies) up and says "Night Night". Bends down and kisses their forehead. Listening to her and Zander talk to each other before bed is one of my most favorite parts of the day. They have become better friends and appreciate that they have someone else to play with. These kids are my world.
These are some pictures from September 2012 after her heart surgery.
September 2013....Amazing how big she has gotten.
I thoroughly enjoyed our summer with the kids. If you can call that cool weather summer! Zoe was so hesitant about swimming in the pool, but by the end of summer she never wanted to get out of the pool. She's grown up so fast and has become such a fun little girl to be around. She's currently getting her 2 year molars, so its been sleepless nights for me. You forget how good you feel after you slept through the night for so long, then all of a sudden "teeth" happen and you're like a zombie.
In July, we had professional photos taken by the wonderful photographer Felicia Reinhard. She's the founder of Inspiration Through Art (they also have a facebook page which Zoe was blogged about). It's a charity organization that finds children with illnesses and takes their photos and share's their story. It was a hot day in July. We went to a beach along Lake Michigan in the burbs. It was so peaceful and she captured the kids so well. Here are some of my favorites.
The summer weekends were filled with Zoo days, pool days, park days, play dates after play dates, all of which we didn't get to experience last year. We were a normal family and appreciated all the normal kid things to do! (of course I carried my lysol wipes every where I went and washed her hands after everything she touched!)
We took our first mini family vacation with family friends. Mike and I haven't had a vacation since our honeymoon (going on 5 years of marriage). Although we only headed 90 minutes north, it was a much needed getaway with the kids. Zander and Zoe loved the weekend. Here's a few shots of our weekend
We hit another big milestone. Zander started Pre-K 3. He's had some adjustment issues, but thoroughly enjoys school. His speech has picked up tremendously. He just seems so grown up lately. And he's obsessed with Super Heroes!
Zoe's health....
Well since May, we had 2 hospital stays, back to back for yet another set of viruses. Then Mike caught Meningitis from work, which put him into the hospital for a week. May to the end of June were spent at the hospital. Talk about loosing your sanity all over again. I feel like we'll permanently have outstanding medical bills year after year.
We also had to add another specialist to her team of doctors in August. Zoe has been blessed with some amazing surgeons and doctors (and nurses) and I'm so glad that every one on her team works together and are in constant communication with each other and Mike and I.
Knock on wood, Zoe has been hospital free since June. I can't believe we're going on 3 months of no stays. This is the longest stretch ever. The doctors have prepared us that this year will be worse than last year due to Zander being around 30 other kids daily. But we're a month into school, and so far we've been all healthy. I only hope and pray it continues for a bit longer. Its been so nice not having to take her in, look into her big blue eyes and see the fear she has from every poke and prod. She's much older and more aware of her surroundings. Not to mention it throws our household off. Zander misses his sister (they sleep in the same room), I have to figure out my work schedule, as does Mike, get our families involved, etc.
We're also hitting another HUGE milestone. September 25th is Zoe's Surgiversary. Its been 1 year since her open heart surgery. The scariest time in our lives. My birthday is the 23rd and last year, we went to church and had her anointed on my birthday. (Gosh I'm tearing up just writing this). Never in a million years did I imagine I would write how good she's doing a year later. Its been nearly 2 years since her diagnosis in utero. I feel like Mike and I have traveled a thousand miles and have dealt with so much stuff more than the average 30+ year old. (No wonder why I have more gray hair these days). She is so strong and I continue to thank God every night for my little miracles. Zoe's living proof of nothing short of a miracle. With everything that she has undergone, at the ripe old age of 19 months, she's so care free, loving, tender, smiley, and happy. Heterotaxy Syndrome is apart of her, but doesn't define her. No matter who enters our house, she runs up to them, puts her hands in the air and says "up". And she expects that attention or she'll cup your face and give you a kiss. Every morning she holds my hand in the car. She grabs my hand to walk down the hallway to get her diaper changed. She's nurturing. She has three (3) babies that she calls "Nae" (She has an Auntie Renee that goes by Auntie Nae). She puts "Nae" on her Minnie Mouse cart, takes her blankie, covers her baby(ies) up and says "Night Night". Bends down and kisses their forehead. Listening to her and Zander talk to each other before bed is one of my most favorite parts of the day. They have become better friends and appreciate that they have someone else to play with. These kids are my world.
These are some pictures from September 2012 after her heart surgery.
Zoe had a low grade fever last month which prohibited her from getting her 18 month shots. They have been rescheduled three (3) times due to fevers. Luckily it hasn't put us in the hospital. We're hoping to get that shot soon. Additionally, we are hoping that she will be able to get the Synagis shot starting in November to help prevent against RSV. These monthly shots cost a fortune ($4,600 - $5,000 a shot). Other than having her normal pediatric visits, we're not scheduled to see any specialists until December, January and February (3 different teams). She's prone to "Phantom Fevers" as her fevers will spike to 102-103 and have no other symptoms. She will eat normal and act normal. We're praying that hopefully she has built up some immunities to all these viruses she seems to catch month after month.
So whats in the near future? We're hoping to enjoy Fall just as much as Summer!
Thank you for the continued prayers and support. I know Zoe does too!
XO
Thursday, May 9, 2013
THE YEAR CLEARANCE
I wanted to share my great news on
Zoe. I feel like we hit the lottery. We had her follow up cardiology appointment (8 months post
op). She had an EKG done yesterday and they felt they didn’t even
need to do an echo, she looked and sounded great. We actually got the one
YEAR clearance, to not come back to see them until next May. All in all,
since her GI is repaired and her heart is now repaired (except for some weird
anomalies and location of her heart) she should lead a very normal and healthy
life. We just have to worry about her polysplenia (her spleens do not
work, which means she can’t fight off infections ). She is sick every other week and hopefully with the start of the warmer weather, it will lessen. I do know that once our son starts pre-K in the fall, we will have some hospital stays, but to know that the doctors are no longer worried about her heart, makes everything seem so much better and easier. Although
Heterotaxy Syndrome is very rare, we have been blessed with a lesser complex
case. To say I’m excited is an understatement.
So once she can build immunities in the next few years, she
should be a very normal little girl who hopefully will not have any more
hospital stays J I know things can change, but I'm going on the positive route that our Zoe bean, who has overcome so much (as well as her parents), is going to be just fine!
This blog was and has been so extremely therapeutic for me. I can't even tell you how many dark days I've had while I was pregnant with her, and during her first year of life. I never intended on reaching so many people with our story, nor did I anticipate meeting some extremely wonderful people throughout my journey. The Heterotaxy Community is near and dear to my heart. You have an instant connection with these parents. You know the emotions they are going through.
Going from two-three doctor appointments a week for months on end, to now having the year clearance for Pediatric Surgery (GI) and Cardiology, is just truly amazing. She just turned 15 months, I never thought we'd get to this point this quickly.
With that, thank you all for all of your support, prayers and great thoughts for our family. I will update the blog and facebook page when I can or if anything new pops up about Zoe, but for now, I'm just going to enjoy my family and have fun this summer!!!!!!!!!!!!!
Monday, April 22, 2013
Spring is here, normalcy has begun!
It has been some time since I updated the blog. Life has been so hectic for me with work, and its been a blessing to say that Zoe is healthy and starting to lead a normal life as a 14 month old :). No news is good news to report, right? We're enjoying our little family of 4 by taking walks, playing at the play ground, etc. We are still cautious of bringing Zoe around to certain places with lots of kids (germ breeding ground) but as she's been healthy we're trying to let her be a "kid". We have her follow up echo in a few weeks along with her 15 month check up. Our only concern is that she hasn't been gaining weight, at least when we went in in March for her last synagis shot, she has weighed the same since December. Hoping that we see a weight increase in a few weeks. The girl eats like a piggy, non stop eating all day. It just makes no sense why she isn't gaining, but she's growing height wise so she probably has a great metabolism!
I will update in a few weeks!
I will update in a few weeks!
Thursday, February 7, 2013
What is Normal?
I'm taking a few minutes for myself, to write, to breathe, to just sit. My life is a big stress ball these days. Work is insanely busy for me (I'm preparing for 6 trials at once), trying to get Zander into a preschool in the city of Chicago (which is so extremely competitive) and our personal life, well you know the story. Zoe was admitted on Saturday night with a fever.
Saturday, Feb. 2nd was her first birthday party. I think she had such a great time with all the other kids that came, as well as our family and friends. We had such a great turn out, more than 100 people came. We're so fortunate to have wonderful family and friends. We're lucky that some of Zoe's NICU nurses have turned into friends, because they also came.
She didn't nap very long in the morning, roughly only 45 minutes long. She normally takes about 1.5-2 hours. But what kid actually sleeps the day of their birthday party? She was so tired throughout the party, and her cheeks began to get flushed. When she has rosy cheeks, its a given that she has a fever. I won't bore you with details of the hospital stay, but long story short, they couldn't figure out why she was having fevers of 103 and 104 degrees for 5 days. She had every test run and all they could say "its probably a virus". She was out of the NICU in March, and since July we've been Children's for 3-5 days the beginning of every month. The only month she hasn't had a stay was December. My heart breaks for her. She's older. She's more aware. She looks at you with her big blue eyes with terror of the "white coats". All the pokes and prods to determine if she's got an infection. Its just a never ending story. I hate Heterotaxy. I hate that her immune system is so low and we live at the hospital. And I'm extremely sad that she spent February 5th, her 1st birthday in the hospital.
We're trying to keep our lives as normal as possible for Zander, and our sanity. Thank goodness for my inlaws who always step up and watch Zander and/or relieve me at the hospital so I can go into work (I have no vacation time). I'm physically and emotionally drained. I cried my eyes out a few days ago. Life just isn't fair sometimes. I know we are going to go through these stays, we were told in advance due to her condition, but it really just wears on you. I miss my husband. We rarely get a chance to talk because one of us is always at the hospital. We can't take a vacation any time soon because I have to "bank" my vacation days until her immune system gets better. We don't get date nights because life is just busy on the weekends, or we're at the hospital. I don't even remember what "normal" is anymore.
She was released last night at 10pm. We're hoping she's home for good for a very long time. We need spring to come!
Some of her pro 1 year photos:
The day of her party
Her birthday spent in the hospital: 2/5/13
Saturday, Feb. 2nd was her first birthday party. I think she had such a great time with all the other kids that came, as well as our family and friends. We had such a great turn out, more than 100 people came. We're so fortunate to have wonderful family and friends. We're lucky that some of Zoe's NICU nurses have turned into friends, because they also came.
She didn't nap very long in the morning, roughly only 45 minutes long. She normally takes about 1.5-2 hours. But what kid actually sleeps the day of their birthday party? She was so tired throughout the party, and her cheeks began to get flushed. When she has rosy cheeks, its a given that she has a fever. I won't bore you with details of the hospital stay, but long story short, they couldn't figure out why she was having fevers of 103 and 104 degrees for 5 days. She had every test run and all they could say "its probably a virus". She was out of the NICU in March, and since July we've been Children's for 3-5 days the beginning of every month. The only month she hasn't had a stay was December. My heart breaks for her. She's older. She's more aware. She looks at you with her big blue eyes with terror of the "white coats". All the pokes and prods to determine if she's got an infection. Its just a never ending story. I hate Heterotaxy. I hate that her immune system is so low and we live at the hospital. And I'm extremely sad that she spent February 5th, her 1st birthday in the hospital.
We're trying to keep our lives as normal as possible for Zander, and our sanity. Thank goodness for my inlaws who always step up and watch Zander and/or relieve me at the hospital so I can go into work (I have no vacation time). I'm physically and emotionally drained. I cried my eyes out a few days ago. Life just isn't fair sometimes. I know we are going to go through these stays, we were told in advance due to her condition, but it really just wears on you. I miss my husband. We rarely get a chance to talk because one of us is always at the hospital. We can't take a vacation any time soon because I have to "bank" my vacation days until her immune system gets better. We don't get date nights because life is just busy on the weekends, or we're at the hospital. I don't even remember what "normal" is anymore.
She was released last night at 10pm. We're hoping she's home for good for a very long time. We need spring to come!
Some of her pro 1 year photos:
The day of her party
Her birthday spent in the hospital: 2/5/13
Tuesday, January 8, 2013
Broken Record
Hi my name is Brittany and I'm a broken record. I feel like that should be my blanket statement and just to put it out there for anyone new reading our blog. Yes, we were admitted into the CICU from Thursday night until Sunday early afternoon. Yes, this was another fever that brought us in. Yes, she was admitted due to her being polysplenic (but afunctioning asplenic). Finding out your daughter has an extremely rare condition was so hard on us emotionally, but we've managed through this (so far). We were petrified of her heart and her bowl obstruction, all of which are repaired, except for her different anomalies to her heart. I honestly thought her heart and GI would be the issue, but I now think otherwise. My daughter's immune system is not working, or at least not appearing that way.
I stayed with Zoe Thursday night until Friday morning. I specifically told the fellow on CICU to not have her woken up and to let her sleep. No one bothered Zoe. Mike and I did the switch-a-roo, so he could be with her and I could get some sleep. My inlaws watched Zander for the day. Again, we only communicated via text. She was not eating in the hospital. This girl does not reject food (only when you give her canned peaches). She also wasn't drinking her formula. She still was not hooked up to fluids and I wanted to keep it that way. I ended up heading back to the hospital to bring our Dr. Brown bottle to see if she would take that. That was the magic trick. She wanted her own bottle. Phew. Her fever broke Friday and was back to her peppy self, or "Smiley" as the CICU likes to call her. You know you've been to the CICU too many times when the entire staff, doctors, people who bring you food get excited that Zoe has been admitted. Mike stayed with her until Saturday morning. We switched on Saturday, thinking she was going to be discharged. Nope, protocol was 48 hours from the time the antibiotic was administered (midnight Thursday), so that puts us at midnight (Saturday) and they wouldn't discharge us then. So Zoe and I made the best of it. One of our favorite NICU nurses came down to play with her, her cardiologist came by to visit, we played blocks, went for wagon rides, and tried to get her to sleep. Night nurse time. PURE HELL.
She explained she was new as a CICU nurse. We got along great and Zoe loved her. We gave Zoe her penicillin at 8pm thinking she was going to go down. We're going to call the nurse "Ninja Nurse" because Friday night she was able to get her vitals on Zoe with no problem, no awakenings (keep in mind Zoe didn't sleep the night before due to the ER). Zoe finally laid down at 10pm and I transitioned her to the crib. Turned the thermostat up so it was warmer, laid on the bed and shut my eyes. Next thing I know Zoe is screaming. I didn't have my glasses on so I couldn't see the clock. I asked "Ninja", did Zoe get up on her own? "What time is it" "Yes, perfect timing too because I have to get her vitals, its midnight, I'll be right back and get her bottle". Zoe has been only sleeping for 2 hours now. I go and grab Zoe and see the pen-light flashlight on the crib. Ninja lied. I know she checked her pupils. When Ninja came back in, I asked, why are you doing vitals on her, she needs to sleep, or we'll be back here in 3 days because the lack of sleep, makes my kid sick. "Its my job, I'm so sorry, she'll go back down, your husband had no problem getting her back to sleep yesterday" (eyes bulging out of my head and temples flaring). Ninja leaves. How dare she. 2:05, 2:15, 2:20 Zoe is roaring to go. I go to the bathroom knowing Zoe will scream, pull her leads off and Ninja will run in. Worked like a charm. She entered the room, and I said "just so you know she's been up since midnight, you are not doing vitals on her in 90 minutes, or I'm discharging her". My conversation to her got a lot more heated as I was so tired. Long story short, Zoe didn't go down until 7:30 a.m. Yes, 7:30 a.m. The girl only slept 2 hours on Saturday. Absolutely ridiculous. So she was able to get her 4:00 a.m. vitals. Next visit, sign on the door and discussing MY rules to the charge nurse.
It was protocol to have Zoe stay in the CICU for 48 hours. She's cutting teeth, so she will get fevers, and yes we'll have to bring her in "just in case". We may have more visits this winter (Gosh, I hope not) I discussed this at length with 20 + cardiologists, her cardiologist, hematology, pediatric surgery and her pediatrician. They do not want to play the what if game. Nor do we. Just been not an easy year with hospital stays. Her birthday party is February 2nd. I'm so fearful we'll be back in the CICU after that. But she deserves a party, this is a huge milestone for any kid.
We have more follow up appointments with everyone in the next few weeks. This Friday, Zoe is the heart ambassador for one of the elementary schools. I will be giving a brief speech on Heterotaxy and CHD. We're deeply humbled by this honor.
I stayed with Zoe Thursday night until Friday morning. I specifically told the fellow on CICU to not have her woken up and to let her sleep. No one bothered Zoe. Mike and I did the switch-a-roo, so he could be with her and I could get some sleep. My inlaws watched Zander for the day. Again, we only communicated via text. She was not eating in the hospital. This girl does not reject food (only when you give her canned peaches). She also wasn't drinking her formula. She still was not hooked up to fluids and I wanted to keep it that way. I ended up heading back to the hospital to bring our Dr. Brown bottle to see if she would take that. That was the magic trick. She wanted her own bottle. Phew. Her fever broke Friday and was back to her peppy self, or "Smiley" as the CICU likes to call her. You know you've been to the CICU too many times when the entire staff, doctors, people who bring you food get excited that Zoe has been admitted. Mike stayed with her until Saturday morning. We switched on Saturday, thinking she was going to be discharged. Nope, protocol was 48 hours from the time the antibiotic was administered (midnight Thursday), so that puts us at midnight (Saturday) and they wouldn't discharge us then. So Zoe and I made the best of it. One of our favorite NICU nurses came down to play with her, her cardiologist came by to visit, we played blocks, went for wagon rides, and tried to get her to sleep. Night nurse time. PURE HELL.
She explained she was new as a CICU nurse. We got along great and Zoe loved her. We gave Zoe her penicillin at 8pm thinking she was going to go down. We're going to call the nurse "Ninja Nurse" because Friday night she was able to get her vitals on Zoe with no problem, no awakenings (keep in mind Zoe didn't sleep the night before due to the ER). Zoe finally laid down at 10pm and I transitioned her to the crib. Turned the thermostat up so it was warmer, laid on the bed and shut my eyes. Next thing I know Zoe is screaming. I didn't have my glasses on so I couldn't see the clock. I asked "Ninja", did Zoe get up on her own? "What time is it" "Yes, perfect timing too because I have to get her vitals, its midnight, I'll be right back and get her bottle". Zoe has been only sleeping for 2 hours now. I go and grab Zoe and see the pen-light flashlight on the crib. Ninja lied. I know she checked her pupils. When Ninja came back in, I asked, why are you doing vitals on her, she needs to sleep, or we'll be back here in 3 days because the lack of sleep, makes my kid sick. "Its my job, I'm so sorry, she'll go back down, your husband had no problem getting her back to sleep yesterday" (eyes bulging out of my head and temples flaring). Ninja leaves. How dare she. 2:05, 2:15, 2:20 Zoe is roaring to go. I go to the bathroom knowing Zoe will scream, pull her leads off and Ninja will run in. Worked like a charm. She entered the room, and I said "just so you know she's been up since midnight, you are not doing vitals on her in 90 minutes, or I'm discharging her". My conversation to her got a lot more heated as I was so tired. Long story short, Zoe didn't go down until 7:30 a.m. Yes, 7:30 a.m. The girl only slept 2 hours on Saturday. Absolutely ridiculous. So she was able to get her 4:00 a.m. vitals. Next visit, sign on the door and discussing MY rules to the charge nurse.
It was protocol to have Zoe stay in the CICU for 48 hours. She's cutting teeth, so she will get fevers, and yes we'll have to bring her in "just in case". We may have more visits this winter (Gosh, I hope not) I discussed this at length with 20 + cardiologists, her cardiologist, hematology, pediatric surgery and her pediatrician. They do not want to play the what if game. Nor do we. Just been not an easy year with hospital stays. Her birthday party is February 2nd. I'm so fearful we'll be back in the CICU after that. But she deserves a party, this is a huge milestone for any kid.
We have more follow up appointments with everyone in the next few weeks. This Friday, Zoe is the heart ambassador for one of the elementary schools. I will be giving a brief speech on Heterotaxy and CHD. We're deeply humbled by this honor.
Friday, January 4, 2013
Hello 2013
In with the new and out with the old, right? I never want to rush my life as my kids are growing up so fast, but I wanted 2013 to come so we could have a fresh start, new year, new beginnings, and put 2012 behind us. 2012 was an extremely hard year for us, but also a huge blessing. Zoe is the apple of my eye. She lights up any room with her big smile. Being a parent is a blessing and I'm extremely thankful for Zander and Zoe. God chose Mike and I to be their parents, and I thank him every night for them both.
The holidays came and gone. New Years was uneventful, but we planned it that way. Mike had to work New Years day so we just had our close friends come over for a few hours to hang out (its the kids Godfather). Zander woke up from his nap, flushed and had a low grade fever. I knew Zoe was going to catch this eventually.
January 3rd was Zoe's big Pediatric Surgery visit with her surgeon, Dr. Madonna. We haven't seen her since July. We've seen her team after Zoe's open heart surgery in September and then her last ER visit in November. We were so excited to see Dr. Madonna's face when she saw Zoe. Just as I expected, a big "oh my gosh she's so big" and Zoe walked right up to her. Her GI exam was passed with flying colors. We got the 1 year clearance, so we won't have to see her until January 2014! YAY!!!!
We get home and Mike told me that Zoe took over a 3 hour nap. My mouth dropped. This girl doesn't really nap. Something was up. She then didn't eat her dinner. She may be a tall lanky girl, but she also has a bottomless pit. If she sees you with food, she'll come right up to you and expect to have a piece (I mean we gave her ribs and chicken alfredo). I gave the kids a bath and she seemed warm to me. Sure enough, she had a 101.7 fever. We called cardiology and they told us to bring her in.
My heart just sank when that thermometer computed 101.7. Its been 7 weeks since our last ER visit. This cold/flu season is terrible this year and its even harder on children who are immunity compromised.
Listening to your daughter scream when the "white coats" enter the room is just heart breaking. Daddy is with her right now, while I'm home with Zander. Thank goodness for modern technology as I've only been able to communicate via text message with Mike. I wish I could add up all the hospital days, time, travel, room service, mileage, text messages that have happened over this last year. I'd go to the end of the earth for my daughter, this just gets to me sometimes. I had a major pity party last night in the ER room with her. I hate that her condition has her in the ER so many times. I know she can't help it and it has to be this way; its just not fair. I feel so completely lucky that she is doing as good as she is, but man, we need a break. Zoe needs a break. And winter just began!!!!
Hopefully we get to go home tomorrow....
The holidays came and gone. New Years was uneventful, but we planned it that way. Mike had to work New Years day so we just had our close friends come over for a few hours to hang out (its the kids Godfather). Zander woke up from his nap, flushed and had a low grade fever. I knew Zoe was going to catch this eventually.
January 3rd was Zoe's big Pediatric Surgery visit with her surgeon, Dr. Madonna. We haven't seen her since July. We've seen her team after Zoe's open heart surgery in September and then her last ER visit in November. We were so excited to see Dr. Madonna's face when she saw Zoe. Just as I expected, a big "oh my gosh she's so big" and Zoe walked right up to her. Her GI exam was passed with flying colors. We got the 1 year clearance, so we won't have to see her until January 2014! YAY!!!!
We get home and Mike told me that Zoe took over a 3 hour nap. My mouth dropped. This girl doesn't really nap. Something was up. She then didn't eat her dinner. She may be a tall lanky girl, but she also has a bottomless pit. If she sees you with food, she'll come right up to you and expect to have a piece (I mean we gave her ribs and chicken alfredo). I gave the kids a bath and she seemed warm to me. Sure enough, she had a 101.7 fever. We called cardiology and they told us to bring her in.
My heart just sank when that thermometer computed 101.7. Its been 7 weeks since our last ER visit. This cold/flu season is terrible this year and its even harder on children who are immunity compromised.
Listening to your daughter scream when the "white coats" enter the room is just heart breaking. Daddy is with her right now, while I'm home with Zander. Thank goodness for modern technology as I've only been able to communicate via text message with Mike. I wish I could add up all the hospital days, time, travel, room service, mileage, text messages that have happened over this last year. I'd go to the end of the earth for my daughter, this just gets to me sometimes. I had a major pity party last night in the ER room with her. I hate that her condition has her in the ER so many times. I know she can't help it and it has to be this way; its just not fair. I feel so completely lucky that she is doing as good as she is, but man, we need a break. Zoe needs a break. And winter just began!!!!
Hopefully we get to go home tomorrow....
Wednesday, December 26, 2012
Christmas Recap!
Another year and another Christmas has come and gone. It truly is amazing as you get older, time seems to go flying by. I held my son in my arms yesterday while playing with him and told him to "stop growing up". Picked him up and held him like a baby and said "I used to do this when you would cry for 8 hours straight" (acid reflux baby). He just giggled. I wish I could freeze time. As a child, all you want to do is hurry your life up, I want to turn 13 to be a teenager, I want to be 16 so I can drive, I want to turn 21 so I can get into the bars legally....then once you hit 25, I don't want to turn 30, or 40, etc. All I wanted to do when I was younger was be an attorney, get married and have kids. I didn't become a lawyer (by choice, but I am in the same profession), I got married and have two beautiful kids. My life is a success. I am blessed in so many ways.
My sister was in town for the weekend and its always so good to have her home. She lives out of state so I get to only see her a few times a year. However this past year with all of Zoe's hospital stays she has flown in to be with us and her. We were able to meet her new boyfriend over the weekend. I haven't seen my sister this happy in a very long time.
On Saturday I hosted Christmas with my sister, her boyfriend, my step-sister, her boyfriend, and then with "Grandma and Grandpa". The kids had a blast as we don't get to see my parents that much as they also live out of town. We had Sunday to re-coop and just veg before the hustle and bustle of the holiday. Christmas Eve is always the busiest for us. I have a small family, however I married into a gigantic family who are so amazing. Christmas Eve we headed to my Aunt's to celebrate Christmas and then we all headed over to her Church for Mass. I'm so glad we went to Church this year. We needed too after this year. The 10 of us sat in the pews, Zoe was held by my sister and to keep her busy, Blake put on the pictures. Well Zoe knows how to scroll through photos. As the pastor was saying "lets bow our heads and thank God for whatever you would like for this past year", Zoe stopped on her photo when she was hooked up to all these wires. It was almost like God was telling me, this beautiful girl sitting next to you is here, and will be here. Yes, tears were flowing and I couldn't stop. Mike heard me sniffling and grabbed my hand. Coincidental that she so happened to get to her surgery pictures? Maybe. But I think otherwise.
After Mass we rushed to my in laws to open presents with one of my husband's aunt's. Then headed over to my mother in law's side of the family. 20 or so relatives finally got to meet Zoe. She couldn't be around family at Easter and we haven't had the opportunity to meet up again until now. It was so nice having them finally meet their great neice or cousin!
Christmas day yesterday, I will never forget. This was the first year Zander really "got it". Shelf on the Elf worked (well for most of the time) and he knew he flew home to the North Pole each night. Zoe got up earlier than Zander yesterday, saw the presents and went right to the tree and tried to rip it open. We had to get Zander up. It took him a good 10-15 minutes to actually get up. Once he creeped out (thanks mom for the video camera...that moment will never be forgotten), and saw the tree with all presents, his expression was priceless. Santa was great to the kids and great to mom and dad! My mom and sister and us headed over to my inlaws to have Christmas dinner there. I'm very fortunate that my family gets along so well with my inlaws. Makes holidays and birthday parties easy and enjoyable!:)
I told Mike on Christmas Eve "you know Zoe is going to be sick after Christmas due to all the family we've visited and just not napping on her normal schedule". He replied "I know". Well this morning she puked and is a snotty mess. So far no fever, but its a PJ day for the kids and Mike. We're cleaning out our filters (although we just did), picking up an additional air purifier, and going to attempt to put our Christmas decor away today so I can really dust and clean again. Hoping to have the illness leave our family...finally. I just don't want to spend any more time in the hospital. When we rush her to the ER with a fever they have to poke and prod her for everything to rule out everything. That's why I get petrified to go back to Children's. You don't to see your child look at you with sad eyes and just scream so they team of doctors can rule out this or that. We were told not to keep her in a bubble so she can start building up some immunities even if her spleens don't work. Well it seems as if she can't break out of this cold since October. I know the illness is going around everyone's family. I just get a little bit more scared when its active in my household. I spent NYE in the hospital last year for preterm labor, I just would like to ring in the new year with my sweet family and some of our closest friends! So to Zoe's cold...."GO AWAY".
I hope Santa was great to all of you and you enjoyed all your family time!
My sister was in town for the weekend and its always so good to have her home. She lives out of state so I get to only see her a few times a year. However this past year with all of Zoe's hospital stays she has flown in to be with us and her. We were able to meet her new boyfriend over the weekend. I haven't seen my sister this happy in a very long time.
On Saturday I hosted Christmas with my sister, her boyfriend, my step-sister, her boyfriend, and then with "Grandma and Grandpa". The kids had a blast as we don't get to see my parents that much as they also live out of town. We had Sunday to re-coop and just veg before the hustle and bustle of the holiday. Christmas Eve is always the busiest for us. I have a small family, however I married into a gigantic family who are so amazing. Christmas Eve we headed to my Aunt's to celebrate Christmas and then we all headed over to her Church for Mass. I'm so glad we went to Church this year. We needed too after this year. The 10 of us sat in the pews, Zoe was held by my sister and to keep her busy, Blake put on the pictures. Well Zoe knows how to scroll through photos. As the pastor was saying "lets bow our heads and thank God for whatever you would like for this past year", Zoe stopped on her photo when she was hooked up to all these wires. It was almost like God was telling me, this beautiful girl sitting next to you is here, and will be here. Yes, tears were flowing and I couldn't stop. Mike heard me sniffling and grabbed my hand. Coincidental that she so happened to get to her surgery pictures? Maybe. But I think otherwise.
After Mass we rushed to my in laws to open presents with one of my husband's aunt's. Then headed over to my mother in law's side of the family. 20 or so relatives finally got to meet Zoe. She couldn't be around family at Easter and we haven't had the opportunity to meet up again until now. It was so nice having them finally meet their great neice or cousin!
Christmas day yesterday, I will never forget. This was the first year Zander really "got it". Shelf on the Elf worked (well for most of the time) and he knew he flew home to the North Pole each night. Zoe got up earlier than Zander yesterday, saw the presents and went right to the tree and tried to rip it open. We had to get Zander up. It took him a good 10-15 minutes to actually get up. Once he creeped out (thanks mom for the video camera...that moment will never be forgotten), and saw the tree with all presents, his expression was priceless. Santa was great to the kids and great to mom and dad! My mom and sister and us headed over to my inlaws to have Christmas dinner there. I'm very fortunate that my family gets along so well with my inlaws. Makes holidays and birthday parties easy and enjoyable!:)
I told Mike on Christmas Eve "you know Zoe is going to be sick after Christmas due to all the family we've visited and just not napping on her normal schedule". He replied "I know". Well this morning she puked and is a snotty mess. So far no fever, but its a PJ day for the kids and Mike. We're cleaning out our filters (although we just did), picking up an additional air purifier, and going to attempt to put our Christmas decor away today so I can really dust and clean again. Hoping to have the illness leave our family...finally. I just don't want to spend any more time in the hospital. When we rush her to the ER with a fever they have to poke and prod her for everything to rule out everything. That's why I get petrified to go back to Children's. You don't to see your child look at you with sad eyes and just scream so they team of doctors can rule out this or that. We were told not to keep her in a bubble so she can start building up some immunities even if her spleens don't work. Well it seems as if she can't break out of this cold since October. I know the illness is going around everyone's family. I just get a little bit more scared when its active in my household. I spent NYE in the hospital last year for preterm labor, I just would like to ring in the new year with my sweet family and some of our closest friends! So to Zoe's cold...."GO AWAY".
I hope Santa was great to all of you and you enjoyed all your family time!
Monday, December 17, 2012
A Year in Review
It's been a while since I last posted....work is insanely busy for me and by the time I get home, I spend time with the kids and do normal "mommy" stuff and hit the hay. Zoe has been sick for the last week with the normal flu symptoms (runny nose, on and off fever, etc.). We took the kids to the doctor last week to make sure it wasn't anything that needed antibiotics because I've been so worried that we'll be back in the ER. Remember, until we're told otherwise, we will always have to take Zoe in with a fever of 100.4 or higher, and that is a low grade fever. I feel as if she's been sick since we've been home from her open heart surgery in early October. It doesn't help living in Chicago with our weather, having a husband who doesn't sleep because his job prohibits him (Chicago Firefighter), I feel as if our house is destined to get sick. We bought a new air purifier and humidifier to help Zoe. I'm also going to get our air ducts professionally cleaned as maybe this will help. No more hospital stays!!!
It's been a year since we found out Zoe's suspected diagnosis. Last year was filled with such heartache, and I look at my sweet daughter, how far she's come, and can't even imagine what the doctors were thinking of when they were telling us to think otherwise after our 20 week ultrasound. This time last year I was extremely large due to the excess of amniotic fluid due to Zoe's bowl obstruction, I had walking contractions, 24 hours a day, less than five minutes apart (until I delivered in February), I had two preterm stays, one being 5 days long, countless appointments, telephone conferences with genetic counselors and just prayed and prayed and prayed.
Yes we've been through hell over these last 10 months, but so far, the end result has been amazing. She's overcome so much! Small Intestinal repair = big check, Was able to eat after 3 weeks of life = BIG CHECK, Cranial Band is off = big check, Physical Therapy is over = big check, Heart is repaired = BIG BIG check. Yes, we still have an uphill battle to continue fighting, but what family doesn't have obstacles at some point in their life? This little girl lights up the room with her ear-to-ear smile. She's has a big personality, she's extremely loud (I mean very loud). She loves to sing and dance and just talk, talk, talk with a deep voice. Her bouncy curls just go all over the place and those big blue eyes just melts your heart. Can you believe she's been walking around furniture for over a month? She's trying to take her own steps, but is a little hesitant. She's eating mostly all table food and I have no idea where it goes because she's so skinny (last week's appointment, she was 22 lbs, 12 oz). Her "war wounds" are amazingly beautiful. Zander kisses her "red boo boo" a few times a week (I love my sweet boy). We have a gazillion and one appointments in January and February 2013. Just looking at our calendar, I'm exhausted with appointments. Hoping she passes with flying colors at each one!
Christmas is a time to be with family and friends, and I'm so thankful for God for blessing me with two beautiful babies. I hope 2013 blesses your family as 2012 blessed ours. Zoe is our miracle in so many ways. She's my inspiration. She makes me want to be a better person.
A year in review (well almost a year). This little peanut (not such a peanut anymore) was a fighter (still is) from day 1.... from our family to yours, MERRY CHRISTMAS and HAPPY NEW YEAR!
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