Tag Archives: uh oh

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”.)
Screen shot 2012-07-23 at 11.32.50 PM

How to Survive the Germiest Season of All

***I am not an expert of any kind (even if I wish I were and even if my kids think I am) so please use this advice in any way that you feel comfortable. This is just based on my own personal experience and research. As always, consult your doctor(s) and local government for more information.***Image

Fall, winter, even spring. We can even throw summer in there. But out of all of these seasons we all know that fall and winter are the germiest months because of cold and flu viruses and stomach bugs like the monster Norovirus. They’re all lingering around more than any other months. Or so it seems at least.

Let me get this out there- I am a germaphobe and I’m fine with that. It all started since the day we got The Queen’s diagnosis. Call it what you will, but even if it’s an anxiety-induced reaction to such a disheartening diagnosis, I will definitely embrace my germaphobeness because it’s what helps keep Natalie healthy.

I’ll also get this out there- I have a strong phobia called “emetophobia” and this I’m not that fine with. It’s hard to handle especially during these fall and winter months, especially with tales of stomach bugs cropping up almost daily and in all parts of the world up and down my Facebook newsfeed. The first feeling I get is worry for the one dealing with it. The second feeling is dread: the feeling that I just know that my own child will get it really soon. Here’s what’s really strange, I can clean it up but do NOT let me catch it. I will myself to never throw up and I take pride in having 6 1/2 years of not doing it. Even if it hurts more to not do it. I would actually prefer to have a broken bone, a really bad cold, or go through a long labor again to ever throw up. How crazy is that? Purdy crazy.

But it’s my phobias that cause me to research and listen for stories and information about how to avoid getting sick..well, at least not that often. We all do not have to be sick every week if we don’t need to. Trust me, I’ve partially thrown in the towel this school year. I have Natalie and her brother in full time elementary school. Chances are, almost every germ in this house comes from them. Chances are, our family will get sick no matter what. And I’m actually fine with that. We have to let the immune system do what it needs to do. I was born in 1978, had chickenpox, the flu almost yearly, oh so many bad colds, and so many stomach bugs that I lost count by middle school age. And I survived! But what’s scary for me is that I know very well that health-compromised kiddos like Natalie get hit harder, longer, and faster with every germ that enters their bodies. If I can take away an extra cold or stomach bug away from her every year then my hard work is always worth it. So next to getting your yearly flu shot (you better get it!):

TOP 10 LIST OF THINGS YOU SHOULD DO (or at least maybe consider because for realz)

10.) Wash wash wash those dirty hands! Anytime you come home from work, the playground, school, from even just checking the mail you should be washing those hands. We live in an apartment building with a shared front door. Everyone, even those with hands so dirty their fingernails are black, touch those doors. Not everyone washes their hands after wiping their butt. But nonetheless, washing your hands with warm soapy water for 20 seconds is not only the best defense against illness, it’s one of the only ones that actually work.

9.) Change school clothes when your kiddos come home. Sometimes I let the kids keep on whatever they’re wearing. So yes, I do slack sometimes. But if they sat and laid around the school’s sandbox that day, change those nasty clothes! Also, an uncovered, ignored sandbox? Gross.

8.) Clean your cell phone! I have to confess, I’m pretty sure I broke my phone by doing it too much so as soon as I find a safe way to disinfect a phone (or if you know a way comment). I usually wipe it with a Lysol wipe, but I’m pretty sure my iPhone hates me for that. One thing you can do if you don’t feel comfortable cleaning your phone, is just wash your hands after using it. And have your kids do that also. Especially after having overloaded your phone with Angry Birds and many other apps.

7.) Keep those hands off of your eyes, nose, and mouth unless you’ve washed your hands. If you must pick your nose, use a tissue (hear that kids?). If you eat a meal wash those hands beforehand! And cover that nasty cough in the crook of your arm! I’ve lost count how many times my kids coughed in my mouth. Directly.into.my.mouth.

6.) Take a good look at your bathroom and kitchen. Really look hard. See what I’m seeing? Every few days or so, with a diluted bleach and water solution, disinfect your sinks and toilet. That includes the handles (toilet handle too)! If you have to use a hand towel make sure you have a spot for it to dry and wash the hand towel at least every few days. I started using paper towels this year and that helps. You can even turn the sink off with your paper towel- cutting down on  germs. Also, keep your toothbrush away from the hand soap. For some reason, our soap pump keeps ending up RIGHT next to our toothbrushes (water splatter YUM). And if you can, deep clean your bathroom as often as you see fit. In the summer months I deep clean monthly. During the winter months I deep clean it every 2-3 weeks. Think about it- the bathroom is an awesome haven for all germs. Not to freak you out or anything.

5.) Learn to love bleach. Point blank. Plus, it’s the only thing that kills Norovirus. The.only.thing. I like Lysol and really only use it once in a while. Plus, Lysol wipes  and Clorox wipes do NOT kill many gastro bugs. Sad isn’t it? Bleach my friends.

4.) Don’t overdo it with the hand sanitizer. You end up killing tons of good germs on your hands and just smearing the bad ones all over. Hand sanitizers are really helpful in a pinch, but don’t rely on it constantly.

3.) Avoid buffets if you’re too squeamish like me. During these months I avoid eating food that’s shared by other people. I don’t care how snobby that makes me. I just don’t care. But come May, I’ll probably eat at the local Golden Corral again. I loves me some Golden Corral.

2.) Keep your fridge clean! Think about it- you touch a dirty cart handle at the grocery store or at WALLY WORLD, then you touch your groceries and stuff. Think about how many hands touched your yogurt cup or juice container. Plus, you sat your groceries on a checkout belt that even the mere thought of what’s lurking on those will definitely end my no puke streak. I’m not saying to go spray bleach on your gallon of milk..but just think about that milk handle, fridge handle, and stuff. Just be aware of what you’re touching.

1.) Get friendly with the “high” setting on the dryer. If it can kill bedbugs it can kill pretty much anything else stuck behind after washing.

I know that these tips don’t guarantee an illness free season but following some of these have proven to keep my family healthy. Ironically, we just got back from an 8-day vacation on the east coast and the idea of washing hands and using hand sanitizer pretty much went out the window by day 2. And so far, we’re all still healthy since being home for almost a week (KNOCK ON SOME WOOD). I don’t know everything, but I do know a little. Happy Holidays!

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.

on ignorance.

One of my biggest pet peeves when it comes to anything in life would be ignorance. And I don’t mean the “girl, you are so ignorant” kind of ignorant. I grew up using it that way and suddenly realized one day that it doesn’t mean “rude”. I mean the total lack of knowledge about something especially when it comes to the whole gigantic world of medical-type people. More specifically, the ones who have been poking, prodding, and eye-balling my heart kiddo for going on 3 years now. The ones who still gawk at her beautifully set chest zipper and drainage scars and then with total shock ask, “why does she have THOSE scars??”

Seriously??

We’ve been going to the exact same pediatrician for 3 very full years now. We have no other choices of doctors in our area right now, so for a little bit longer, we’re stuck. The doctor who is (technically) supposed to be the “special needs” doc isn’t always at her practice. In fact, she hardly ever is. And we were very lucky and happy to have her perform Natalie’s most recent June well checkup. Talk about catching up on so much lost time. It had been about 2 years since we had seen her last. So those last 2 well checkups were spent with nurses, doctors, gosh whoever they are because there are so many. And to be totally honest here, I’m (technically) fine with anyone seeing Natalie as long as it’s a checkup and I feel like they’re thorough enough. Hey a chart is a chart. As long as it’s all charted I’m good. Problem is, the office is still playing digital catch up which has probably beat the world’s longest record for transitioning from paper to ones and zeros.

So we’ve had medical professionals take not a quick second to know who Natalie is before they meet her. They have ignorantly started a checkup with a child who they didn’t bother to read about before slapping those blue gloves on their hands. The front desk people know exactly who Natalie is! The nurse who administers vaccines does, too and they all are like in love with Natalie because they know how far she’s come. They’ve seen her in her highs and lows and everything in between.

But when a doctor who has met Natalie before asks “why does she have THOSE scars??” again, I’m going to just say that I had no idea that she had scars OMG! That’ll get a good rise out of ’em.

kindergarten drama.

In exactly 2 weeks The Queen begins kindergarten. This means two things:

A. I’ll have 2 children in full day elementary school (par-TAY!)

B. Natalie will be off in her own new world enjoying new things without me.

okay… let’s throw a C in there…

C. The Queen will not be The Queen in her classroom.

So let’s revisit each one of these points in-depth shall we?

A. This means that I will be able to take a couple of college courses without as much interruption. I’m already signed up for only 2 classes and both are online. The point of staying at home was to ease back into college without killing myself and let my children and husband see me go nuts. It was also because the elementary school is only a couple of small blocks away. It ensures that I’m close by in case the first month or so of Natalie’s new school adventure starts out rocky. We completed a Health Plan as opposed to a 504 Plan. Tomorrow’s post will explain more about those options in case anyone needs some information. The school already stated that they are a little “nervous” with Natalie which makes me even more nervous. They warned me of the extra trips to the school and phone calls until they are comfortable with Natalie’s “normals”.

But I do feel like this school is totally capable of taking care of Natalie. If I didn’t I’d have thrown in the towel and home-schooled her.

B. Natalie needs to be in her own new world enjoying new things without me. That does not make me sad one bit. Especially after this summer.

C. The Queen (thinks) that she rules her household. But The Queen will be surrounded by other girls who rule their households, too. This will probably result in some minor disputes. But all in all, I think The Queen will always have her thrown waiting for her once she returns home from school. ; )