Wordless Wednesday: Sick Girl

My poor baby is sick. She has a cold, a cold that landed her in the ER on Monday and has kept her down since Saturday.
She is still so beautiful though (in my humble opinion).

PS
To see my wonderful pictures from Wordless Wednesday, click to the linky on Mommy Moment.

Celiac Disease

I think I have celiac disease. I've thought it for a very long time now. I've been tested and it comes back negative, but I know false negatives happen. I don't want celiac disease. I don't want to work that hard to eat, but I'm so tired and I hurt.

I know I have celiac disease.

There. I've said it. I'm certain I have celiac disease.

It's really funny to type these words. Ironic almost. I'm coming to terms with what I have known in my heart for 10 years. I have celiac disease. Yet, I'm eating leftover pasta. Right now, I'm eating leftover pasta. I know I will feel ill in a couple of hours from eating this. I may even have worse pain this evening, but I'm eating it anyway. 

I know, you are thinking "oh, she is just jumping on the gluten-free bandwagon that seems so popular these days." Let me say this unequivocally: I DO NOT WANT TO BE GLUTEN FREE! The time, the energy, the cost, the hassle is not for me. I want easy. I want quick. I want affordable. Being gluten free is none of the above.

Moreover, I am decidedly anti-fad. I try not to do what everyone else is doing simply because everyone else is doing it. Sometimes, it happens. For instance, I love Pinterest. But, I didn't want to join pinterest for a long time simply because everyone else was doing it. Same thing with the Facebook, which I now love. I resisted for years. Anyway, please know going gluten free does not sound fun to me in any way, shape, or form.

So why would I think I have celiac sprue, a horrible disease that makes you into a label reader from hell and that prevents you from eating pizza, pasta, cake, beer, and everything else lovely to eat in this world?  Simple. I have lots of the symptoms that have gone undiagnosed since 1996, despite massive amounts of testing for every other disease in the book. And many of my family members have it. And yes, celiac disease is familial.

The first of my aunts to be diagnosed was diagnosed about ten years ago. She has been the strongest advocate that I get tested and re-tested. She has also known all of the pain I have suffered over the years that could never be explained. Yet, I ignored her. I have learned to live with chronic pain, so I didn't think all of the hassle was worth it. Yes, there are some days I can't walk, but I've managed to work through the pain for over 15 years.

But lately, I've been feeling more symptoms. I am keenly aware that feel ill after a snack of pretzels. And I'm lethargic, despite sleep (and it is more than late nights with DQ). I know I have to do something about this, but I want a definitive diagnosis. I don't want to go gluten free and then always wonder in the back of my mind if I really need to be. I know I will wonder and it will drive me batty.  I also want a doctor who believes me when I say I have celiac. In the past, the GI who did my testing didn't believe it was possible because I am fat (celiac sprue used to be called the wasting disease because your body can't absorb nutrients). But celiacs aren't necessarily thin.

So, at my check up with my primary care doctor next week, I am going to discuss my concerns. I'm going to explain what I am doing. I am going to get a referral to a different GI doc. I'm going to be properly tested, but before I go in, I'm going to eat lots of gluten so that my villi will definitely show what I know in my heart is true.  I'm telling this to the world so that I can get support. I don't want to go gluten free and left on my own, I won't. But if you all know, perhaps I'll have a reason to stick to my guns this time. I want to get healthy for my kids. I want to be around for a very long time. If I have celiac and I leave it untreated, I am only shortening my life. I don't want to do that.

Rookie

When I met the Mad Scientist, he had an old cat. Don't ask how old though. The Mad Scientist does not remember when he got Rookie. He just knows that Rookie was a baby when he was chosen from the animal shelter and he was pretty old when we met in March 2003.

Rookie and the Mad Scientist were very connected. Best buds. The two of them went through quite a bit together.  So, of course, when the Mad Scientist and I moved in together, Rookie came as part of the package.

Rookie and I always had a love/hate relationship. I would scratch his ears and pet his belly, but I hated that he would take beautiful things and ruin them, then vomit up the remains for us to clean up. But then he'd do something cute and I could forgive him. Granted, when we had flowers sent to our house when our babies were born or when my grandmother died, those had to be locked in the bathroom.

Rookie loved sleeping in our bed. I hated when he vomited in our bed (last time he slept there!)

 Rookie loved my shoes. I hated when he vomited in my shoes. A love/hate relationship.

But, Rookie did clue me in when we had a mouse in the house when TRex was a baby (and I way overreacted and immediately called an exterminator, rather than put traps out!)  He was a hunter.

He eventually became the hunted as well. TRex crawled for the first time because he wanted to get to Rookie.

TRex walked for the first time because he wanted to get to Rookie. Or was that DQ?  It doesn't matter. Rookie was loved and chased.

Rookie would run from TRex, but DQ he let pet him (well until she could run!)

Rookie always wanted to go outside, but was crazy scared when he got there.

Mostly though, Rookie slept.

Rookie slept a lot.

He slept in the most interesting places.

 

Every once in a while though, Rookie would play.

Yes, that is catnip he somehow got out of my cupboard and opened in the living room!

Rookie was a very large cat. He was fat, but mostly just really big. This summer, we started to notice that Rookie was losing weight. He was vomiting a lot more. I made the Mad Scientist take him to the vet. We were told it wasn't a big deal and he came home after treatment and seemed to be better, but never quite the same.

Over the last two weeks, Rookie started to drool, so the Mad Scientist set up an appointment. On Thursday night, the Mad Scientist, TRex, and DQ took Rookie to the vet, where we all assumed he would be left for the night to have a tooth pulled. Ten minutes into the appointment, I got a frantic phone call from the Mad Scientist. The kids were in the bathroom while he told me about the gigantic tumor in Rookie's mouth, going down his throat, blocking his ability to eat and drink. Rookie had to be put down. Even if we did surgery, the vet indicated it would only buy us a little time and Rookie would be in misery.

They brought Rookie home and we all said goodbye. Friday afternoon, the Mad Scientist and I took Rookie to the vet for the last time.

 

 

 Rookie will be missed. 

 R.I.P. Rookie Cookie. We love you!

Wordless Wednesday: Game Playing

Can you tell what game our two kindergartners are playing?

 Yes, those are crayons in their hands and going into the bucket.

Still not sure of the game? Neither are we, but I'm guessing it was fun.

Blue

Have I ever mentioned that I hate the color blue? I do.  I hate, hate, hate blue.

It is such a shame because blue was always my favorite color. Except for the 8 years I lived in dorms and apartments, I have always had a blue bedroom. I would buy most of my clothes in blue.

Then DQ, my blue baby, was born. Blue now means lack of oxygen. It means a sick child.

DQ is not supposed to turn blue any more. She was fixed and revised. No more blue is what they told me. But she is blue. Her fingers and lips turn blue frequently. And no matter how many times the cardiologist tells me it shouldn't be happening, it is.

DQ is getting worse. She wakes up more swollen each day. Her fingers turn blue more frequently. I am constantly stopping her, grabbing her hands and looking at her fingers. I hold her close to feel her heart rate. I am petrified. We were told there was nothing more to be done. Yet, she is getting sicker. What does that mean?

And all the while, I have people left and right telling me she looks great. I've heard it from about 5 different people in the last couple of weeks alone. Heart disease isn't obvious. It is a silent killer. It lurks beneath.

But I see it. I watch my baby so closely. I know she is getting worse. She is blue. I hate blue.

My Kids

TRex is afraid to be upstairs by himself. He always has been. So, today, when he had to go upstairs to use the bathroom since the downstairs was occupied, his sister offered to go up with him. She stood in the hallway pretending to be Cap'n Hook while he did his business. TRex made sure that DQ knew if she got scared, he was right there for her on the other side of the door. That is how it is with my kids. They take care of each other.

Later today, TRex kept grabbing DQ, annoying the hell out of her. She would yell. That is how it is with my kids.  They fight with each other frequently.

DQ had a helium balloon. She called it her baby. It's string was too short for her to reach it. TRex got a stool, climbed on, then handed his sister her balloon baby.  That is how it is with my kids.  They help each other out.

Five minutes later, DQ needed the stool to wash her hands and TRex held on to it for dear life, not letting go no matter how nice DQ asked.  That is how it is with my kids.  They drive each other crazy.

Right now, TRex and DQ are playing in their bedroom together, having fun.  That is how it is with my kids.  They are best friends.

Wordless Wednesday: Mommy

The Dancing Queen and her baby.

 
Gone are the days of DQ wanting to be Thomas. These days, she plans to be a mommy when she grows up.
Let's hope her dream comes true.

An Aunt's Perspective on Congenital Heart Defects

When I couldn't find myself able to write for CHD Awareness Week, I went where I always go--to my sister. She has been a rock for me over the last couple of years. I know if I need her, despite living 6 hours away, she is here for me. Always. No questions asked.  And she was here for me today.  Please read the Editor's perspective.  CHD doesn't just stike the child born with a broken heart. It doesn't just hurt the parents and siblings. CHD affects the entire family.

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I don’t remember M.O.L. first telling me about being pregnant with DQ or when she and the Mad Scientist found out that DQ was a girl (I know she called and told me these things, but I don’t remember). What I do remember is standing in my kitchen talking on my phone and hearing my big sis break down in tears because her baby was going to be born severely sick. I didn’t understand a word of what she told me; all I knew was that there was something majorly wrong with the unborn girl that we now know as the Dancing Queen. Since I live 6 hours away from M.O.L., I felt helpless. My big sis who had always been my protector throughout my life had just been given the biggest blow from which I could not protect her—her unborn child was sick—and I couldn’t even give her a hug. I realize now that even if I was in the same room as M.O.L. when she delivered the news, I would still feel helpless. I had no idea what this illness was; I had no idea what the future would hold; I had no idea how to help my sister.

Even though DQ’s birth was a planned cesarean, I was not there; instead, I had to wait for the call that she was born and then hopped on the road the first chance I got. The first time I met DQ, she was a couple of days old and in the NICU; only two people were allowed to visit at a time, and at least one of those people had to be either M.O.L. or the Mad Scientist. I went through the long scrubbing routine required before entering the NICU and slowly walked to the room, feeling scared out of my mind because I still didn’t know what to do or say. I saw my sis and went and gave her a hug. I saw DQ in the little plastic hospital crib with all the wires and leads on her little body. To be honest, at that point, it didn’t hit me how sick she was. My own baby, The Chef, had been hit hard and hospitalized with pneumonia for an 8-day stint when he was 2 months old, so the wires and leads didn’t seem all that terrible. I knew intellectually that she was very sick, but I didn’t really feel it. The first time DQ’s illness hit me a little was when she had her first heart surgery at 7 days old. I don’t think I was there during the surgery; I think I was watching TRex. I do remember seeing her (now in the PICU, where there were more nurses per bed) after the surgery—she was so small and had even more wires and a breathing tube. I didn’t like seeing her like that, but I also didn’t want to leave her. I had to head back home to get back to work, so I visited DQ one last time in the PICU. I really didn’t want to leave. I hated that I lived 6 hours away. What if I never got to see this little girl again? But DQ is a fighter; we saw that early on. I don’t know all the stats, but I do know that we could have lost her at many points.

As time went on, my family and I got to visit some weekends, so we started to learn a little bit about the everyday routine to care for DQ. I saw the tons of syringes that were filled with various medicines; I saw the ng tube that went through her nose down to her tummy to nourish her. Most importantly, though, I saw the beautiful smile of my niece, DQ. She’s always had a way to suck me in with that smile.

When the time came for DQ’s “full-fix” surgery, I took a week off of work to be there. I again felt helpless but figured that maybe by being there instead of 6 hours away, I could be of some use. I mostly watched TRex while M.O.L. and the Mad Scientist were at the hospital. Little Car Guy, The Chef, and I tried to keep TRex occupied and having fun since he was too little to understand why his mommy and daddy weren’t with him—well, that was my thought process; my boys just wanted to have fun with their cousin.

I’ve tried to get out there as much as possible when DQ has needed a procedure of some sort, including another full week with DQ’s third open-heart surgery. There are times, though, that all I could do was pray from home and be available via phone. When I’m stuck at home, I feel helpless, but when I’m there in my home state, I still feel helpless. To this day, I don’t know what to do or say because there’s nothing I can do or say to make it all better. I can pray, I can be on the other end of the phone and listen, and I can cherish every minute I do get to spend with DQ and the rest of my family. None of it is ever enough, though. I feel like a constant failure to my family because I can’t do enough to make anything better. I long to be back in my home state, and a lot of that longing is because I’m not able to take the time out to visit on a random weekend—I don’t get to spend enough time with DQ. M.O.L. doesn’t know this yet, but Car Guy and I just made the decision this week that we’ll be moving back to my home state over the coming months. It still won’t be enough to live closer by, but maybe I can take more of the burden off of M.O.L. and the Mad Scientist. I’ll never be able to remove it completely, though.

Throughout this journey, I’ve learned more about CHDs (nowhere near the amount of knowledge that M.O.L. has accumulated, but at least a little). The stat that still shocks me the most is that nearly twice as many children die each from CHDs as from ALL forms of childhood cancers combined; yet funding for pediatric cancer research is five times higher than funding for Congenital Heart Defects. Why is it that it took my niece being born with a severe CHD before I started to hear anything about CHDs? Why don’t other people know more? I see commercials and have coworkers constantly participating in walks and other fundraisers for one type of childhood cancer or another. I don’t want the work with pediatric cancer diminished, but I want more awareness of CHDs and more research money for CHDs. It may be selfish, but I want DQ to have every chance she can get because I’m not ready for her to be gone. I won’t be ready for that until I’m looking down from heaven and Miss DQ is the ripe old age of 80 or so. I also want her to be able to play with my kids and have fun like a normal kid without swelling and coughing because her heart can’t keep up. I want some new answers from researchers. I want to stop feeling helpless.

Why I Can't Do What I Want for CHD Awareness

I had every intention of starting heart week off by giving my tips for advocating for your child--strategies I've used, methods of persuasion where you don't look like a raving lunatic, but an engaged, well-informed member of the team. Yah, that was my plan.

I can't do it. This heart week has been hard for me.  I can't put my finger on it, but it has been much, much harder.

Apparently, my emotional baggage is greater this year. Each story I read makes my heart hurt a little more. Each time I post something on FB, a friend comments and I realize just how many people I know who have lost their child to CHD.  I counted--about one out of every ten of my heart friends has lost a child to the demon that is CHD. While I fight most days for CHD awareness so that someday it won't be one in ten, right now, it is scary and sad and emotionally overwhelming.***

Children whose stories I have followed for years are very, very sick. My heart breaks for their families. I want to do something or say something, but there is nothing. I've been on this road long enough. I've seen miracles happen and kids get better against the odds, but I also know, many times, there is nothing.

All of these awareness stories are touching my heart so much this year. Perhaps it's because  CHD is all encompassing in my life still.  CHD won't leave us alone.

I've read so many stories of kids having their "fix" and going one to two years between cardiac appointments and then finding all is good at the check up.  I want that! There are many kids who don't take any medicines after their fix. I want that! There are kids who aren't reminded daily that they were born with a broken heart. I want that!

Here we are, four years in, "fixed" and "revised", and still presented with constant reminders that CHD controls our lives. Each morning, for the last couple of weeks, I wake a sleeping DQ, too tired to get up (despite 11.5+ hours of sleep) and face swollen. She has not been my happy girl. And later, each morning, her fingers tips and lips turn dark blue, almost black. I know, she is getting worse, but I can't articulate it. It petrifies me.

I have longed for the day when DQ can just be a regular girl. I mean, I treat her the same as I do TRex. I send her to school. I punish her and let her scream and cry at me (in her room) for 45 minutes if she doesn't behave. I let her play until she tires, but when it comes down to it, DQ tires out after a couple of minutes of running. And no matter how "normal" we make taking 10 medicines a day, DQ still takes 10 medicines a day. We can't escape it.

And while I don't want my daughter to be defined by her CHDs, it is hard to escape. I can't pretend nothing happened. Frankly, DQ isn't fixed. She won't be fixed and she will always have limitations.  Since she tends to ignore her limitations to her detriment, we have to remind her.  She will dance, run, and play until she is coughing. We've been told not to let her do that. How can you tell an almost 4 year old "you have to stop playing now" without an explanation? Not possible! And I'm not going to lie to DQ. So when she asks "why?", I have to tell her "your heart and lungs can't handle it, we don't want you to start coughing."

So, this heart week has been hard. I read so many wonderful stories of odds being overcome and it makes me so proud of these mighty warriors. But it also makes me sad and a little jealous because of where we still sit. Then I read the heart wrenching stories of loss and I fear the worst. But I'm so grateful for these strong women sharing their warrior-angels to help the greater good. And I feel guilty and sad and happy and grateful that my child survived and she is living life to the fullest.

At the core of it all though, the CHD Awareness stories leave me sad. Every story this year is making me sad. So, please forgive me for not doing as much for CHD Awareness as I would like. And please see Stefenie's blog, where she is strong enough to tell the heart stories, to spread awareness, and link to others who are stronger than me.



*** I know several years ago, the odds were one of ten CHD babies would not make it to their first birthday. I've heard that statistic has changed for the better through research. I don't know the new statistic. I just know my personal experience. Please understand that the odds are not 1 out of 10 babies die from all CHDs, but my heart friends tend to have children with complex CHD or complications from their CHD, which is not as easy to survive.

A Glimpse

Below are some to the questions and things I hear in a typical week from the Dancing Queen. A sorta glimpse into what it means to have an almost 4 year old with complex heart and lung disease and 22q11.2 deletion syndrome.

Mommy, we can't walk to the candy store. The cold air makes me cough and my chest hurts.

Translation: Between the high pulmonary pressures and asthma, when the Dancing Queen is out in the cold for more than a couple of minutes, her lungs can't handle it.

Mommy, can I see videos of myself as a baby in the hospital?

DQ always wants to look at videos and pictures of herself as a baby, in the hospital.  She always points out when she sees baby DQ with a pacifier. This is one of the hardest things she asks the Mad Scientist and I to do. The pictures are painful reminders.

Mommy, I get my army, it's just one little poke. It doesn't hurt a lot, only a little bit.

 Translation: Her weekly Hizentra infusions that are done via subQ button (small needle that only goes into the skin). DQ gets donated human immunoglobulin once a week in her belly or leg. The needle stays in for 2 to 2.5 hours, but it only takes one poke.While DQ says it doesn't hurt a lot, when it comes time to give the "one little poke" she fights us.

Mommy, Daddy always says "a double shot of enalapril."

Mommy, I need my lasix to help me pee. I need my aspirin to help my heart.

Translation: DQ takes about 10 medications a day. At breakfast every morning as I give DQ her morning meds, she tells me these things.  My husband always uses two 1mL syringes to give enalapril and I use one 6 mL syringe; hence double shot of enalapril.

Mommy, I need to eat, sleep, play, and take my medicines so I can grow big, big, big.

 For some reason, this is DQ's normal topic of conversation on the way to dropping TRex off at latchkey in the morning.

Mommy, I'm little because I don't eat. If I eat, I'll be big like TRex.

Translation: DQ rarely eats as much as she should. It is a constant struggle and quite the opposite of her brother.

Mommy, Mickey is sick. I'm taking him to the hospital. His sats are 35. He is almost dead. He'll be better in a week. 

 Translation:  DQ and TRex playing with their animals. Mickey Mouse was sick. It doesn't matter the character, but someone is always sick, they always go to the hospital, they always get shots or surgery.

Mommy, my army kills the bugs, but I still have to take yucky medicine. That's not like my yummy medicines. 

Translation: Yucky medicine=antibiotics; yummy medicines=enalapril, lasix, aspirin, calcium carbonate, calcitriol, and prevacid.

Mommy, why do I have heart disease?

 When we wore red for heart disease, DQ wanted to know why she had heart disease. I had to explain that she is missing a piece of chromosome, so her body didn't know how to build her heart properly. That wasn't a satisfactory answer, so she asked me over and over and over again. Finally, I told her I don't know. She wasn't happy with that, but accepted it.

Heart Month

February is Heart Month. We try to raise awareness of Congenital Heart Defects (CHDs) this month. Since today is "National Wear Red for Heart Disease Day", our family is doing our part.  Both kids plan to tell people they are wearing red for heart disease and our favorite heart warrior, the Dancing Queen.

Today, I'm also featured in Heart Mom interviews for CHD Awareness Month on When Life Hands You a Broken Heart.  Please follow me there.