Tag Archives: kindergarten

Presenting our 28th warrior, Gabriel!

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Super Gabriel!

(Story and photos courtesy of my Lisa Vallejos, founder and president of the non-profit organization Gabriel’s Gift.. Oh, and he she just happens to be the mom of a superhero!):

“‘Oh, the places you’ll go’ by Dr. Seuss is an inspirational story for kids of all ages that was somewhat of an anchor for us during Gabriel’s hospitalization (and after!). We chose to open with this quote because we want you to first of all, have hope. Embrace it. The possibilities are endless and our story is just one of many that will inspire you to expect miracles.

We learned about Gabriel’s diagnosis while he was still in utero; we were fortunate enough to have an ultrasound technician who noticed something wrong with his heart and we were immediately referred to a specialist. After meeting with the pediatric cardiologist, we were presented with 4 options: terminate the pregnancy, compassionate care, the Norwood procedure or a heart transplant. After many sleepless nights and days spent in research, we decided to proceed with a heart transplant and began the process of finding the best Children’s Hospital in the nation for transplants. Imagine our surprise when we were informed that Denver’s very own Children’s Hospital has one of the best heart transplant programs in America!

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Baby Gabriel : )

Gabriel was born big and strong and was transferred to Children’s Hospital about 36 hours after he entered the world. When he arrived at Children’s, the Transplant Team worked around the clock to evaluate him, confirm his diagnosis and establish a plan of action. Within 24 hours, Gabriel was listed on the UNOS transplant list. We were told that the wait for a heart could be anywhere from 3 to 6 months and we prepared ourselves for the duration. However, we received a call when he was 13 days old that there was a match and the transplant team was flying out immediately to check it out. We waited on pins and needles to hear from the retrieval team while our family raced to get to the hospital.

At about 8:00 p.m., Gabriel was wheeled into the operating room while we walked beside his crib. We left him at the door and went out to the waiting room and settled in for the long night. About every hour, the transplant coordinator on duty would come out and give us updates; his chest was open, the team had landed with the new heart and was on their way, his old heart was out and his new heart was in. When his new heart started beating on its own, there were shouts of joy in the waiting room. It was now 3:30 a.m. and we were all physically and emotionally exhausted.

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Heart donor, sweet Kylie Grace.. “My life is your legacy. May it bring you joy. Love, Gabriel”

When we were allowed in to see Gabriel, it was a shock. He was swollen to about three times his normal size and had IV’s in at least 8 different places. There were so many medications flooding his little body but it was easy to see beyond the trauma of his surgery because we knew this was his only chance at survival. He remained swollen for quite a few days but eventually returned to normal. He opened his eyes, got his chest closed up and the ventilator removed. In less than a week, he was moved out of the Cardiac ICU and into the Infant Care Center.

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A true warrior in every sense of the word.

We brought him home 11 days after his transplant.”

Our family met Gabriel and his beautiful family a few years ago. Boy were we lucky. We were brand new to the area and had yet to meet any CHD survivors in Colorado. We truly lucked out meeting them and we feel the same way to this very day. For the past 3 years we’ve had the privilege of getting to see Gabriel grow and grow! He’s doing incredible things and there is no stopping this little man. He has a thirst for life, a huge spirit, and never ceases to amazing everyone who has the pleasure of meeting him. Rock on, Gabriel! We love you big guy!

“Oh the places you’ll go”….

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Check it out! Gabriel and Lisa are spokespeople for Donate Life! How awesome is this?? (Are you a registered organ donor? hmmm? : )

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2 cuties- Gabriel laughing it up with his baby sister, Eden!

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Super Gabriel even wrestles AND plays football!

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Gabriel, his mom Lisa, and sister Eden… this explains where Gabriel gets his hilarious sense of humor!

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In sheer delight watching the whale show at SeaWorld! (this was during his Make a Wish trip!)

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Gabriel wearing his Holter monitor so well!

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Someone loves their sister VERY much… 😀

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At the most recent Donor Dash! 2012!

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“Mom, I can’t say S anymore!” – Lisa, Gabriel’s mom
This is a perfect example of Gabriel’s personality. So cute and so funny…

402754_10150632811784847_2089480477_nWe love you Gabriel!!

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**Gabriel’s Gift is a 501(c)3 that was founded to provide assistance to families who have been impacted by congenital heart defects as well as to raise awareness about CHD.**

**Register here at Donate Life to become an organ, eye, and tissue donor: Donate Life**

Presenting our 22nd warrior, Natalie!

Being pregnant with Natalie was actually pretty awesome. The nausea was still all day long, but compared to her big brother, was mild. She went easy on me while I was pregnant with her. Everything was uneventful and normal. During the course of my pregnancy, I decided to switch my ob/gyn around 20 weeks along. This probably ended up being the beginning of a big mistake. Seriously soon-to-be mamas: don’t switch if you don’t have to. Lesson #1. The only reason I switched was to deliver at a hospital that was supposed to be “top notch” (it ended up being just as good as the hospital where my son was born). As opposed to my old OB, I had no idea but my new ob/gyn was totally against using ultrasounds hardly at all since my firstborn was born healthy and full term. I also was using Medicaid and I can only guess that the doctor didn’t want to “overuse” it. I had to pretty much beg for an ultrasound since I hadn’t had one yet, so at 26 weeks I finally found out that Natalie was a “she”. During the scan, the tech noticed that Natalie was very wiggly and the shots of her heart were not clear at all. She told me to tell my doctor, so she can send me for another scan another day. Totally cool. When I followed up at my checkup with the ob/gyn I asked her “so I hear the scans weren’t clear enough at the ultrasound” and she stated that everything was perfectly fine.

Nowadays, I know to never even take a doctor’s word as the final word when I feel uncomfortable with the answer. But at the time, I just let it slide, even though I felt frustrated, but I just knew that everything was probably..well..fine with Natalie.
The pregnancy went to full term and I had to evict Natalie by scheduled induction on April 21st, 2007- the same day as her daddy’s birthday.
The labor was fast and furious and she was born 3 1/2 -4 hours after labor was induced. She was also born with a clean bill of health and nice and pink. Apgar scores both 9, we were so ecstatic. A healthy baby girl born April 21st, 2007 at 8 lbs even and 21 inches long. Even taller than her big brother. Ha!

Every thought about our unclear sonogram photos went totally out the window. The nurses and doctors all heard Natalie’s murmur pretty soon after the birth, but we were told not to really worry because it’s so common to be born with a murmur that closes up quickly. Right before our 24 hour discharge from the hospital, the nurse who checked Natalie out said the murmur was gone and we were given the discharge papers. Home here we come! We got home and right that evening, my mom in law noticed how purple Natalie’s feet were. I was so deliriously tired that I shrugged it off as nothing serious, that “well, she has really fair skin like her daddy”. We never noticed much of the “purple spells” again so our overly exhausted brains didn’t think much of it. We followed up with our regular pediatrician for the usual few day old checkup and sure enough, our doctor heard the heart murmur loud and clear. Our doctor couldn’t believe no one caught it before we left for home a few days ago. The murmur never went away. Getting a bit concerned, our doctor gives us a referral to go and see a heart specialist at Johns Hopkins Children’s Center.

May 8th, 2007….
we were in the pediatric cardiologist’s office. Natalie’s oxygen saturation was 90%, but her weight and color were normal. At the time, I didn’t know much about the pulse ox numbers and how it worked, but now I know why they rushed to get her into the room to have her heart scanned. They knew something wasn’t right- 90% is not normal.
While scanning her heart during the echocardiogram, the doctor walks into the cramped room about 20 minutes into the test and heavily stares at the screen for a moment. He then sits down next to the tech and says “hmm..Natalie you’re even trickier than I thought”. He went from kind of concerned to really concerned. I’m sure my heart rate went up, but I did what I could to keep Natalie comfortable. She laid there like a champ, drinking from her bottle. The echo had to be at least an hour.
A little bit after getting settled into the exam room, the cardiologist walks in, really stern face, sits down with me and tells me how sick Natalie is. He explains all of these medical terms..but my ears aren’t letting much of it in… neither were my eyes because the tears kept me from seeing his diagrams.. finally the tears fell so I could see the diagram he took some time to draw: something to show me exactly how Natalie’s heart looked. He explained how she wasn’t born with a right ventricle, that it wasn’t functioning at all. That she has a VSD and an ASD but those 2 defects typically came with the defect of Tricuspid Atresia and that her ASD (Atrial Septal Defect) was actually helping to keep her alive. It was so much to take in.
I was so scared to hear more, but I knew I had to hear him talk. Truth is, I wanted him to stop talking. He let me cry and even left the room for a little bit to let me cry it out. Poor James and my mom in law were sitting in the room, too. I was holding Natalie and giving her a bottle and just was in such denial that she was sick. I kept repeating that she didn’t look sick- even her fingers and feet looked nice and pink.
From the time that Natalie was diagnosed to the time that she had her 1st of a few surgeries, the doctors at Hopkins and our pediatrician all kept a really (really) close eye on Natalie. We went in for weigh-ins and pulse ox checks a few days a week at the pediatrician’s office and almost weekly at Hopkins Hospital. We spent almost everyday at a doctor’s office. My husband and I studied the anatomy of the heart and I tried my best to figure out exactly how a Tricuspid Atresia defect functioned. As a new “heart mom” I wanted to be the expert at everything- all the way from diagrams down to exactly what to expect when she’s an adult. I was terrified of having more horrible surprises. I guess that was part of my grieving process- grieving the loss of a perfectly healthy baby girl.
Even with Natalie’s cyanotic spells (now we knew why she turned so purple the day we brought her home and there was even a term for it!), Natalie managed to still gain enough weight to keep everyone happy. She was a little skinny for a little while and slept a lot, but she was getting closer and closer to the bi-directional Glenn operation, and getting more past the need for a BT Shunt.

The focus was keeping Natalie stable and if she could skip the typical first surgery, we were told her outcome was even better. Her oxygen numbers were always in the high 80s or low 90s and with each point she went down, her age went higher. A few months before her surgery we “beefed” Natalie up with concentrated formula and she went from slim to super chunky. They wanted a chunky baby and they got one! With heart babies, the extra weight is actually great for them, during the surgery and for recovery. What a relief to have a nice chunky, big-cheeked baby girl.

(last of a few photos without her chest scars)

She had her very first heart catheterization, to help prepare the Hopkins team, about a week before Natalie’s scheduled heart surgery. Right after they finished, the cath doctor pulls aside in the hallway by the cath lab and tells us “well..we can’t wait longer than a week for this surgery, she needs it no later, her heart is showing signs of declining. Please make sure the date does not change.” My husband’s jaw dropped. I remember how gray Natalie’s skin was those few weeks before surgery. It was a good 50% of the time where she looked really sick. Her pulse ox dropped into the mid 70s. It was time. If she wasn’t going to have surgery very soon, she was going to die.

On Monday, October 1st, 2007 Natalie had her very first open heart surgery: the Glenn Shunt. This surgery helps to prepare her blood flow to skip past the malformed right ventricle and focus on her upper extremities. The goal is to eventually have enough blood flow to the lungs without having to use that side, but use the left ventricle 100% of the time with the Fontan.

 

It was a textbook case to the Hopkins medical team and it was a true miracle to us. I remember the advanced students (they called them “fellows”) who visited the PICU and each patient 2 times a day to check their progress and document everything. They would always visit Natalie last because they used her as the example of a great outcome. They would always smile at me and there was never any shortage of compassion. Here, my 5 month old daughter lay there with tubes and wires coming from every direction, but she was kicking ass and they reminded me of that. I kept holding onto that. And with each day, more and more wires and tubes came out. Freedom!
By Friday, October 5th, 2007 Natalie left for home! Her surgery went perfect and her body responded perfectly to the surgery. She was sore, but the incision (scaring the crap out of me, I can’t lie) was the only most difficult part of the physical care. I was so scared to do something wrong. And hearing Natalie cry from the pain… no mom or dad wants to see their baby in real, uncomfortable pain like that. But within a week of being home, Natalie was showing tons of signs that she was handling it more easily and she was feeling more comfortable.
From the time we brought her home until 2009, we just enjoyed her. She was able to do physical therapy and Natalie finally started walking around 22 months. Her energy, everyone could tell, was pretty good! At one point during Natalie’s recovery, her cardiologist said “Natalie’s body was made for this”. It had seemed that Natalie’s body was created to cope with the lack of her other ventricle.
In April of 2009 Natalie turned 2, we moved to Colorado from Maryland. Hopkins gave us the all clear that she should be able to handle higher altitude, particularly in the lower areas, like Denver. We were told that she probably wouldn’t need her 2nd open heart surgery- The Fontan completion, until around the age of 4 or 5. We had more time to just enjoy Natalie.
The move went well, we quickly found a great new pediatrician to help us keep an eye on Natalie’s health. During the summertime we noticed that Natalie wanted to rest more and her purple spells were more furious and happening more frequently. She still played and was trying to be active, but you could tell there was a drop. She would want to sit and lay around more often than play. We were finally able to get squeezed in to visit our new cardiac doctor at The Children’s Hospital of Denver in mid-September for a sedated echocardiogram. That’s when they threw a huge curve ball at us- they decided that Natalie was ready for the completion of her heart surgery and they wanted to operate ASAP. We were stunned. We thought we had a few more years!
We had a heart catheterization scheduled for October 8th, 2009. This was a way to prepare the heart team at Children’s: to really get a closer look at her heart and past surgery.
We had another curve ball- the heart team found 3 collateral veins that had to be closed off right away. These veins grew at some point over the year or so to overcompensate for the insufficient blood flow. But instead of helping Natalie they decreased her blood flow, which is why she was getting so tired all of the time. After a night stay in the hospital, Natalie recovered well enough to go home and rest. About a week later, Natalie’s energy was THROUGH THE ROOF. She was like a totally different kid. She was jumping and running and being a crazy 2 year old. Her collateral veins were closed off with platinum so there’s always a running joke now how expensive Natalie’s insides are. The only thing missing now are diamonds, which if Natalie could have demanded diamonds she would have.

On the early morning hours of Tuesday, January 12th, 2010, we brought Natalie back to Children’s for her Fontan operation. We were so very lucky to enjoy her through Halloween, Thanksgiving, Hanukkah, New Years, but now it was time to get back down to business.
(Fontan Completion with fenestration)
Her body was ready for this operation even if us parents were not. Other than some extra “oozing” as the surgical team calls it, Natalie’s transfer from off of the heart/lung bypass machine was a success. The operation took a whole lot longer than her first surgery, but this was it. This surgery was to “finish off” what her heart and lungs needed.
We had some little scares during the days in the CICU but nothing that hindered her ability to recover. At one point her kidneys were a bit “freaked out” with the amount of fluid and blood pumping in her body right after surgery, but her body worked it out. There was also a scare with her blood pressure dipping way low at times, particularly for the 2nd night, but just like her kidneys, her body worked that out, too.

By Monday night on January 18th Natalie was strong enough we were all HOME. Those are 4 beautiful letters. She did need continuous oxygen for a while, but we were prepared.
Natalie recovered beautifully. It was, once again, a text book case. We were all so thrilled. Within about a week of coming home, it was so hard to get Natalie to take it easy. Her energy level was pretty great and it became tricky to keep her from hitting her incision. But her incision healed beautifully. There were even moments we were given the green light to let her have a break from the continuous O2. As you can imagine, that was like heaven to Natalie.
We used the oxygen therapy until about April and we didn’t look back (except for when she had a nasty case of RSV in 2011 when she needed it again for a like a week).
Since her surgery, Natalie has evolved into such a spunky, energetic, wild and crazy 5 year old. She’ll be turning six in 2 months! She asks about her scars once in a while and tells us that her tummy and chest scars are “cool”. She has just started to deal with comments from other children in her class and she’s learning how to deal with that. She’s also begun to ask “why me”? concerning her special heart. That’s a really tough question to answer.
To date, Natalie has about 9 visible scars from her surgeries- her “zipper” (she loves it when I call it that), chest tubes scars, wrist scars, and neck scars from various lines. But just like her scars, the memories that Natalie has about her surgery seem to slowly fade away. She attends full day kindergarten, loves horses, LOVES art, My Little Pony, and  has had a Make a Wish trip to Disney World. She’s the kid, out of the 2 we have, that we’ll have to keep a close eye on, but not just because of a heart condition, but because Natalie is a true thrill seeker. Watch out world! Here comes your present day Shirley Temple! : ) (that comment comes from a resident at a nursing home I used to work at that called Natalie “Shirley Temple”.)
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Presenting our 7th warrior, Logan!

I can’t think of any better way but to kick-start CHD Awareness Week than with one of our most favorite (and handsome) survivors, Mister Logan. Our children are the same age, both started kindergarten this school year, and it’s hard to not feel the connection, let me tell you. Stefenie in quite incredible herself. I’ve gotten a wealth of information from her through the CHD journeys we share. Logan is super smart and super brave and now you can read about a real life super hero, thanks to his mom:

“Our lives were shattered with the utter of four little words, ‘I hear a murmur.’ As our pediatrician looked up from our two week old son and began to explain how I needed to take Logan down the hallway for a few tests I found myself in complete shock. In total disbelief that this was even happening I felt numb. I simply followed orders and walked down the hallway with my mom to get Logan an EKG and chest x-ray.

What was supposed to be a happy day filled with our new baby boy’s two week well child checkup, a photo session with our three year old and his baby brother and fun time with Grandma quickly turned into every parent’s worst nightmare. When the tests were complete we returned to the office to await the results. Making the phone call to my husband who was at work was not only emotional but very difficult.

In a matter of minutes your life can change forever.

Three days later we found ourselves sitting in an exam room at the Children’s Hospital, an hour and a half away from our home, reeling from the news we had just been handed. We received confirmation that something was indeed wrong with our baby’s heart but what we thought was just a Ventricular Septal Defect turned out to be much more severe. Our precious little guy not only had a VSD but he also had D-Transposition of the Great Arteries, Double Outlet Right Ventricle, Pulmonary Stenosis and a Right Aortic Arch. All of which were killing him. His oxygen saturations at the time of his diagnosis were in the 60’s and he was in heart failure. He required immediate intervention in the pediatric cath lab to save his life. Those final moments that I rocked him before they took him into the cath lab were the most agonizing moments of my life. I was devastated by his diagnosis, fearful of the unknown and terrified of losing him.

After many tears and several hours later he came out of the cath lab and was placed in the NICU. For the next three days we were thrust into what seemed like a foreign land with a foreign language. We had to learn medical terminology, take CPR, understand Logan’s new cares and come to grips with everything his future would entail. It was overwhelming emotionally, physically and mentally. Yet we were so unbelievably thankful to have our baby boy still with us.

We were able to take Logan home for two weeks before it was time for his first heart surgery.

When Logan was five weeks old he had his first heart surgery, the BT Shunt. Handing my baby over again to the arms of strangers was incredibly hard. I was a wreck the entire time he was in surgery and praying that he would make it out. Several hours later he did and seeing him for the first time after surgery was quite traumatic. They show you pictures in a book prior to surgery to try to help you to cope with all of the things you are going to see post op but it doesn’t even come close to what it is actually going to be like. The many, many machines pumping lifesaving mediations through his body, the ventilator helping him breath, the shocking scar running down his chest, the constant beeping of monitors, chest tubes protruding from his chest, and his little lifeless body laying there unable to move or open those big brown eyes. It was absolute torture not being able to pick him up and swaddle him in my arms.

Logan spent the next 31 days in the hospital suffering many complications and setbacks along the way. He had focal seizures, bloody stools later determined to be caused by a protein allergy, breathing difficulties and a severe oral aversion that led to needing a feeding tube. Being away from our three year old son, Wyatt, for so long was hard on all of us. He came to visit on the weekends but it was so upsetting to him and us every time he had to leave. All we wanted was to be together again and once Logan was stable enough we did.

Logan was still very sick when he came home. He was on many heart medications, had severe acid reflux, a severe oral aversion and a feeding tube. We spent a lot of time the next eight months going to see our pediatrician and traveling for cardiology follow-ups.

When Logan was ten months old he had his second heart surgery, the Rastelli. This time around we were more prepared and took the speed bumps along the way post op a little better. His recovery time was much shorter despite developing a cyst behind his vocal chord that required laser removal so he could breath, trouble coming off of milrinone and a mystery infection. During the Rastelli surgeons replaced his severely stenotic pulmonary artery with a synthetic conduit. Since the conduit would not grow with him we were told to be prepared for more surgery in the future to replace it as he grows.

Brining him home from this surgery was such a huge celebration for us. It was the first time were going to be able to take him out in public, attend family gatherings and just feel like a somewhat normal family again. Six months later, however, we were quickly reminded that the world of Congenital Heart Defects can be unfair. We learned at a routine cardiology checkup that Logan’s conduit had a huge bulge in it and he was going to need a chest CT Scan to determine how serious it was. When the results came back it was confirmed that Logan needed an immediate cath to see if they could perform an intervention to buy him a little more time before he needed surgery again. We were devastated because we had originally been told to not expect surgery for a few years, not months later. Thankfully the trip to the cath lab was a success and it bought us some time.

Logan endured his third heart surgery when he was three years old to replace his conduit and remove a muscular growth from his right ventricular outflow tract. This surgery was one of the hardest for me personally. It was very different from handing over my baby that I barely knew. This was my sweet little boy who kissed me, hugged me, shared with me his sunny little personality and was the light of my life. The thought of having that ripped away from me was agonizing. But Logan once again pulled through his surgery and recovery despite suffering a surgical complication known as Dressler’s Syndrome which causes fluid to develop around the heart along with other symptoms.

Since then Logan has grown into a vibrant free-spirited six year old little boy who lives each day to the fullest. He is sweet, silly and funny. Looking at him now you would have no idea all of the things he has been through the past six years. He started kindergarten this year and has been busy making friends, something he has wanted for so long.

Every person in our family has been changed by this journey. While it has not always been easy and will continue to be something we have to battle every day in the future as Logan will require more surgeries,we wouldn’t trade it for anything. It has made us who we are, brought us all closer and taught us so much about what is really important in life.

We are incredibly thankful for each day we have been given because we know how close we came to losing everything. At the time of Logan’s birth it was not routine practice to receive a 20 week ultrasound in my OBGYN’s office to screen for heart defects. It was also not routine practice to have a newborn baby screened for heart defects before leaving the hospital using a pulse ox. Not a day goes by that I don’t think of how things could have turned out so differently because our baby came home undiagnosed with life threatening congenital heart defects. Thankfully due to the efforts of so many amazing heart moms this will one day no longer happen. Legislation has happened or is currently in the works in many states to make pulse ox screening mandatory on every single newborn. It is a wonderful feeling to know that one day no family will ever have to find out about their child’s heart condition until it is too late.

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Our family had the amazing opportunity to be filmed for a documentary on congenital heart defects called The Heart of the Matter that was produced by TMK Production and The Children’s Heart Foundation. It made its televised debut on PBS stations across the United States last summer. If you have yet to see it you can watch a trailer for the movie by visiting http://www.congenitalheartdocumentary.com/

To learn more about Logan’s journey and to follow our family’s story visit our blog at http://www.whenlifehandsyouabrokenheart.blogspot.com.”

Stefenie also has a Facebook page created for her blog. Please visit and show support and love for this incredible young man and his family. 

update overdue.

Well alrighty then! Let’s get down to business because there’s so much to catch up on!

Queen Natalie has been doing really great. Her energy level has been ridiculous and her feistiness is almost surpassing her energy level. But she’s 5 and she acts like she’s 5. She runs like a 5 year old and socializes with her school friends like a 5 year old. There was an instance last week where she was hanging out with her little buddy from class at the playground. I let him sneak my phone to play Angry Birds. Usually when we see him that’s the 1st thing he asks for now. Go figure. Natalie sits down next to him while he plays the game. He is completely engrossed in the game and she’s sitting on the other side asking him questions about other boys in the class and twirling her hair. I have to be completely honest, her questions made me giggle a bit because they were so…..   “girly”. And here’s this 5 year old boy. Responding in a very… “boy” way. “Yeah I guess so. I guess we’re still friends I dunno.”

It was so funny.

Natalie has started up with a club at school and it’s choir. She gets her chance to sing really loud and dance. She LOVES it. Now that the weather has cooled down we haven’t had any migraine issues, overheating, nothing. It’s been so easy with her in school now. The only real struggle has been getting her to eat her lunch.

About a week ago she and her class went to the pumpkin patch. Sadly, I didn’t get to really snap any photos of her with her pumpkin. We’re thinking of visiting another pumpkin patch next weekend so that’ll be a good chance to get some. She is growing SO much. Physically, spiritually, everything. Even her voice is changing into an older kid’s size.

She’s been challenging when it comes to her homework. She doesn’t really get solid homework but rather practice pages and it’s SO. HARD. to get her to do them. But while in class, her work is fantastic. Her writing is pretty funny because she writes so well but you can tell when she wrote something and didn’t want to do it in class because the letters are HUMUNGOUS. She has sight words such as, “like”, “apple”, “at”, “the”, “on”, “mom”, “dad”, “there”, “like”, etc etc and she writes small sentences and can read simple stories on her own. And Natalie enjoys it which makes every ounce of difference.

Last weekend she had the chance to see her first circus show! The theme for Barnum and Bailey this year is “dragons” and she LOVED it! She kept asking when the dragon would come out. She ate a whole bag of super sugary cotton candy and was glued to the stage. She really did love the entire show. It’s pretty cool to be able to let her enjoy something that was my favorite as a kid, too.

Natalie is also completely 100% “night trained” now!! This was all her doing. About 2 weeks ago, I start helping her pick out her school clothes and find out that she purposely wore underwear to bed. Totally blew me away!! She has had really minor instances of accidents but catches it (that blows me away, too!!) but yup, she is officially a BIG kid. Sniff……

On another note, we did lose her SSI. I just mailed in our request to have an official meeting to appeal the decision. It was a bit upsetting because even though financially we’ve been doing a whole lot better than a year ago, we relied on that income. I’m confused with how the whole process works. Plus, Natalie lost her Medicaid as a result. Thankfully.. oh so very thankfully.. I double-insured her on her daddy’s plan for fear of this day coming, so she can still visit a doctor and get care. So, it’s a little sad that we lost the SSI but hopefully I can show the errors in their decision.

Welp. That’s about it for now. I think I’m going to try out a month soon (probably December) where I will post everyday. I would try November but the Queen and her servants are traveling to Baltimore for almost 2 weeks that month. Natalie will get to spend some quality time with family and friends on the east coast. We’re driving the 1700 mile adventure in our van so let’s see how that goes! Natalie and her brother are excited so we are, too!  But I think it’s because we promised candy and to stop in every state we travel through for a small prize. Yeah that’s probably it.  ; )

changes.

It’s been a full month of school for Natalie and she’s been doing fantastic. So fantastic that I have to document this. I am so excited to see what else she does. There have been some pretty incredible changes going on with Natalie.  She has gone through several years of physical therapy for gross motor issues but since she’s started school she has been running, even jumping! (she has never jumped off of say.. a step, since..well never) and picking up those knees like a champ! She keeps up with her big brother and classmates, too! She moves like a 5 year old now. The amount of changes in her physical abilities has skyrocketed in only a month of elementary school. There’s something about that new title of “kindergartner” that seems to be a big force for her. It was something that I never expected. I survived the first week with Natalie in school I threw all caution to the wind and sort of just let it go. I stopped worrying about her so much. I stopped comparing her to James. I stopped expecting something bad to happen. I stopped. Instead, I starting changing how my thought process was going with our new adventure…

She’s in good hands. 

Indeed this kid is. She’s in perfectly good capable hands. During her first month of school, she has endured a whole lot. And every incident, illness, and upset moment involved someone else to protect her. I won’t lie and say that a tiny part of me wanted to be there to take over the situation(s) instead. But if I keep doing that she’ll never grow up. She’ll never get to experience life away from mom’s shadow. A huge disservice to her if I immediately jump in every moment, bad or good.

For the first month of school Natalie has successfully (and supremely) handled a raging UTI (poor kid..oy), a punch to the chest by a fellow classmate, a classmate’s birthday party, a nasty cold (while taking her 1st major test of the year where she placed VERY high!!), and stomach virus. There are a few things more we can take from this..

Yes. Natalie has half of a heart and by technical standards, she is a little delicate under that skin. Her heart is without a right side, but the left side is so strong! It amazes me every single day how well she copes. I call this time of her post-Fontan life “the prime”. It really is the prime of her life in regards to how strong she really is. And I think that this prime time will last a long time. Is it okay to get a punch to the chest? Absolutely not. Thankfully, she took quite a blow but was completely fine. Phew. As a result, the parents were notified and it seems like this boy has calmed down. Kindergartners: I just don’t see how a teacher can handle 20 of ’em all at once.

2 days after the incident, I was walking Natalie to school on a nice cool morning, with James behind us. She says… “You know, my teacher told the class about my special heart. She told them to be careful with me and to never push or punch me. Then I showed them my scars.”

Luckily I was wearing sunglasses that morning to hide my tears behind them.

Totally out of the blue she tells me this. I told her how proud I was of her and I asked her how she felt about showing her scars and the teacher telling the whole class about her heart. “Pretty good” she says. Pretty good indeed Natalie. Since the incident with the chest punch, no one touches her unless it involves a hug, a tap on the head for “duck, duck, goose”, or hand holding.

Here are some more recent photos of the Queen with her brother and some very special friends at a Broncos game!! enjoy ; )

8 days ago..

Ahhh! So sorry for the lack of updates. Broken promises. Broken plans. Yikes. I intended to update this blog for every day in August. I had a little sliver of doubt at the beginning of the month. Once I got going, blogging everyday, I started to see our calendar fill up. Some days with plans oozing out of the huge box with that day and it’s little ‘ol number. The sliver of doubt began when I saw the beginning of school for Natalie, appointments, and the start of school. School- for everyone! Come one! Come all!

Our household currently houses 4 occupants and 4 students. Check us out! eehhh? Right??

But most importantly, our dear Natalie began the big K on Monday. This year, the school did a “soft start” where each child could pick either that Monday or Tuesday to begin class and then having Wednesday as the first day of a full class. If I heard right, I think there are about 21 students in her class. For our county’s standards that’s not too shabby.

But again MOST importantly, how did she do?

Fantastically! That’s how. She had a quick moment this morning where she asked, “Mommy, do I really have to go to school today? I’m so tired.” I think we all understand the exhaustion in that question. Her brother, who is in 1st grade, asked that question quite a few times during his entire kindergarten year. I’m kind of shocked that she waited to ask all the way on a Friday morning. Tuesday was usually her brother’s day to ask me that question.

The school has been pretty awesome about keeping the teachers in the loop about Natalie’s health plan. In fact, that’s another shocker for me, because I’m so new to this whole kid-in-school-all-day-with-heart-condition-thing. Brand new. She had a year of preschool but by the time I got home from dropping her off it was time to pick her up. And that was only 3-4 days a week. This time, it’s real. Like for real, for real. The school has been very good about taking care of Natalie so far. The only small issue we’ve had was some heat exhaustion the other day, but even I failed to see how hot it really was outside. Throw into the mix 3 recesses (2 of which I didn’t know about) and well, you get a little bit of heat exhaustion. She fell ill by the end of Wednesday, but once I pumped her full of even more water and a snack she was feeling normal again. The school didn’t do anything wrong. They kept supplying her with water and she kept downing it. When her teacher would ask, “Natalie are you okay?” several times, Natalie (just like her mom) would brush it off and just say “I’m fine”. She even looked fine, until we started our walk home.

Now we know to cut her recess time down a little bit on hot days. The 3rd recess is being dropped off soon so that won’t matter. It’s the lunch recess that’s triggering, I think, the biggest problem. For days like today, where the heat is just too much, Natalie will get to spend it inside either with the teacher or at the office, reading, coloring, and hamming it up with the faculty.

Wanna see some photos? Oh you know that’s why you’re here:

Natalie with her big brother! I really need to compare these 2 to last years’ photos. My god.

And there they go… off to new adventures.. off to experience the school life. A life of slightly crappy school lunches, optimistic dread, the sound of bells, the smell of pencils, glue sticks, and copied paper. Just like last year, the new students have the “deer caught in headlights” look. Natalie was smiling and then waved after I took this photo. Ham. Pure ham.

mystery solved?

Today was the day. We were going to go and buy really good comfy shoes for Natalie to wear for school. I’ve been extra dorky lately thinking about how I need to be sure and find a pair of really supportive shoes for her super high-arched feet. She also has a HUGE big toe. Think of a pair of pumps..the really pointy kind? Yes. Natalie will have no problem wearing those when she’s older. Hopefully she’ll be older.

See here’s the thing. Natalie awakens from her sleep every so often with some mysterious foot pain. At first, I thought she was making it up. Then after a few more times of her waking me up by staring at me at the foot of the bed (creeeepy), I realized that something was going on. We started making sure she drank extra water (dehydration?). We started to make sure that she had her daily aspirin right before bed (kick the pain away before it starts?). We also started to keep her from running around in her flip-flops. This has all been going on with her new problem, as well: migraines. So we thought we’d nip both both in the bud at the same time.

It’s gotten better but then I read a thread on Facebook where there is some debate about whether foot and leg pain is connected to pre and post-Fontan patients. We don’t know if it’s the repeated heart catheterizations or what, especially since the tubing is guided through the groin area. There’s a humungo question mark with this. But let’s just say, Natalie isn’t he only kid complaining of her (very specifically) left foot hurting at night.

I knew that we would find her some really comfy running shoes for school. After all, she’ll have 2 recesses at school each day. Gotta put that sandbox sand and wood chips in somewhere comfy! The Queen asked for “pink, fluffy, feathery” shoes. Instead she chose pink and black Saucony’s. Thank god.

After making her choice, we had the salesman measure both of her feet. BINGO!

Her left foot? The one that has been having pain? is almost a full size smaller than her right.

Guess which foot I’ve been measuring? Her right.

I think the mystery may have been solved. We’ll see! Proof that Natalie is cute and quirky.