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. 

 

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

 



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!!!!!!!!!!!!! 

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!

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

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. 

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....

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!