The Pacifier

Picture this . . . Thanksgiving 2011. Lunch for the kids has just ended and a very tired Dancing Queen begs to take her nap. Then it hits us: we forgot a pacifier!

All hell broke loose.  DQ was inconsolable, screaming, crying, full-fledged melt down/tantrum.

Could this be a teaching moment? Would we end the addiction? We weren't about to give in to a child screaming at us.

I chose to do the only logical thing--left the Mad Scientist with DQ and made a mad dash to the closest drug store

And as my husband smashed his head against the wall calmed DQ down and determined if she had repented enough to earn a pacifier, I was lost, trying to determine which pacifier would be best for my tired girl.

I got in line behind a grandpa. We chatted as we waited for the clerk to ring up lotto tickets down the way. After 5 minutes of no movement, I asked the clerk whether we were in the correct line. The grandpa offered for me to go ahead since I was trying to alleviate my daughter.

As we continued to wait some more, the grandpa regaled the story of his young grandson and how he was so old when he finally gave up the pacifier. Then, he went where all well-meaning people go. He told me how there just gets to be a point when a child cannot have a pacifier any longer.

Then he asked how old my daughter was. I told him 3.5.

His demeanor immediately changed. He scolded "Well, you have to get her off of it. Put a piece of spice paper on it one time and she'll never go back. You've got to break her of it."

I explained that my daughter is sick and the only thing that calms her down in the hospital or at blood draws is the pacifier.

He pushed on, set in his way, and I let him.  The fight wasn't worth it and I had just paid for the pacifier.

I'm okay with it. I'm okay that he felt compelled to force his opinions on me. (Heck, I used to be that person who'd frown upon seeing a child who could walk with a binky in their mouth.)  I know people have strong opinions about it.  And I'm okay with those opinions not comporting with me reality.

I'm also very much okay with the fact that my daughter still uses a pacifier at 3.5. I saw why the day of her cath. She was in pain, in a strange place, with strangers all around her. She needed one thing that was a comfort and normal. Her pacifier is that for her. Yes, she has "pets" that she sleeps with at night,  stuffed Lightening McQueen and Elmo, but those she can sleep without. The pacifier is the calm.

DQ in the hospital waiting.

When DQ has an echocardiogram done, she is extremely well-behaved. We've been told over and over again that DQ is one of the best behaved kids they have during those exams. The only reason is because she knows she gets her pacifier.

The fact is, I want her to have something that makes her happy so that when she is being hurt by strangers, she can concentrate on her happy place. Her happy place just happens to be sucking on plastic.

My 3.5 year old has had her ribs spread apart and chest opened three times, her heart has been sliced and diced twice, she has had seven heart catheterizations, three of which had "complications", she had another surgery to correct a defect unrelated to her heart, and lots and lots of procedures under anesthesia with a breathing tube.  My sweet little preschooler usually has her blood drawn at least once a month. She has been averaging two shots every two weeks. She gets x-rays monthly, echocardiograms every four months, abdominal ultrasounds every four months, hospital stays frequently, and IVs often. She wears a nasal cannula, taped to her face, pumping oxygen in her nose every night, she takes 10 medications a day on average, and she doesn't really complain about any of it. The only thing she asks for is a pacifier to suck on when times get hard.  I don't think its too much to ask.

Besides, no matter how much she loves the pacifier, she's not going to go off to college sucking on one at night!

DQ leaving the hospital, after multiple blood draws, echo,  xrays, and lots of doctors.

Hot Mess

I think this is the longest I've gone without blogging since I started this blog. I guess I haven't had much to say that I was willing to share with the world. (I don't think I've ever run out of things to say though. If you've met me in person, you know it is hard to shut me up.) Lately though, I've thought it best to keep my thoughts and words close to the vest.

I have been petrified, angry, resolute, determined, and wistful. All at the same time.

The Dancing Queen had her seventh heart catheterization yesterday. They called me all of a week ago to schedule it. Six days to plan. Well, five days if you count the one day of pre-op testing at the  hospital. That is not a lot of time. Needless to say, my emotional journey had to be sped up and condensed, leaving me a hot mess.

I'm still trying to comprehend all that we were told, but I think overall, it was as positive as we can expect for DQ. We've been told point blank and without reservation that DQ does not have pulmonary hypertension. But we were not told that she does not have high blood pressure in her pulmonary arteries at places. So, semantics are at play.

We were told the pressure in her right ventricle is higher than they'd like, but not high enough to necessitate surgery. However, there was the mention of the possibility for surgery in a year's time. I was not expecting that kind of news.

The doc tried to balloon DQ's stent in her right pulmonary artery bigger, but couldn't.  The doc tried and tried, coming at it in all kinds of ways. In a year's time (or sooner), when they cath her again, they may try balooning again by going through DQ's neck and leg at the same time. Scary stuff. There was also talk of possible non-bypass procedures/surgeries if the neck/leg combo does not work. All of these things were fairly frightening.

Additional work that was called for, could not be done because it posed too serious a risk without enough possible benefit.  So, at the end of the day, we got pictures and a plan for other pictures to be taken in the future. Unfortunately, the docs could not take all of the pictures needed.

The entire situation makes me angry that my baby had to go through this. Better imaging technology is needed! An invasive procedure should not be the only way to image the vasculature of the body.

It makes me sad that they couldn't help her like she needed. It worries me that we have to watch her closely for the need of additional surgery. And it breaks my heart to see my sweet, sweet girl in pain and crying. Her access is so limited that she has bruises all over body where they tried to place arterial lines and IVs (but failed).  Before today, she had already lost 3 out of 4 cath points in her legs.  To top it off, DQ is incredibly scared that she will have to return to the hospital. She now knows the hospital causes pain. The hospital is the boogey man. She begged us to not make her go back. And all we could say is "not tonight."

At the same time, I am incredibly grateful to know how well my baby is doing. I have many friends whose children did not make it. Friends whose children are much, much sicker today. Life is so very, very precious. Hug your babies tight and if you no longer hold them with your arms, I am sending you my love right now.

Ignorance is Not Bliss, Just Ignorant

When I was pregnant with the Dancing Queen, my family kept the news of DQ's diagnosis a secret from another family member, pregnant with her first child.  Nobody wanted to worry the mom to be. She was so close to giving birth, the thought was it would be too much. And I was so lost in my own grief, that I didn't really care. I went along with it.

Four years in and I know that was wrong. We should not shield pregnant women. If they do not know the risks inherent in giving birth, how can they know what to look for? Moms and dads are the first line defense for their babies. They need information. They need to know what to look out for, especially since heart defects are so common, but not yet routinely screened.

I don't know why I started thinking about this today, but I did. Life is a miracle. Each day, I'm flummoxed by the thought that any of us can be alive at all because of the complexity involved. Any tools we can have to help us through are needed. Knowledge is the greatest tool available.  So, if you are pregnant or love someone who is, please let them know about CHD (read this link with tons of info), so they have as many tools as necessary to help their baby should they be one in a hundred.

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After posting, I realized why I was thinking of this today. Today is the 4th anniversary of the day our life changed completely. Four years ago today, I had my follow-up ultrasound, where they diagnosed DQ at 20 weeks gestation with tetralogy of fallot and couldn't find her pulmonary artery. That was the first time they told me "we just have to wait for her pulmonary arteries to grow."

Thomas

Have I ever mentioned my girl's imagination? I don't think that I have. Let me just tell you, that girl has a huge imagination. I'm talking colossal.

The Dancing Queen didn't really start to speak until she was 2 and had tubes put in her ears for the first time. But when she started speaking, we started to see her imagination shine through. For years now, the Dancing Queen has been pretending to be characters.

She'll wake up in the morning and declare she is Mickey Mouse. You can't call her by her given name. She will only respond to Mickey. Five minutes later, she'll switch characters, but not tell you until you use the wrong name.  So, I'd call her Mickey and she'd tell me "No, I'm Thomas!", even if I called her "honey".  For the longest time, she would just switch between characters, usually Mickey, Thomas, and Lightening McQueen.

One day, neighbors stopped by (neighbors we had never met). DQ was at the door and the neighbors asked her name. She responded, quite seriously, by stating "TRex". Of course, TRex was in the background yelling "No, I'm TRex!!!"  Our neighbors thought the kids were crazy, but I guess that is fine.

Anywho, DQ's pretend play has continued unabated to do this day. However, since last Halloween, she has become more serious in her play.  Last year, when we dug out the Halloween schtuff, DQ discovered TRex's Thomas the Train costume from when he was two.  DQ fell in love.

She wore the costume as much as she could, but if you asked her, she'd tell you she was going to be Elmo for Halloween (she had had me purchase said Elmo costume in August).

 

 

From that point on, more and more frequently, DQ pretended to be Thomas.  Mind you, she doesn't regularly request to watch "Thomas", but she pretends to be him. Constantly.

This year (when she decided to be Izzy from "Jake & the Neverland Pirates), as soon as the Thomas costume came out of storage, she jumped at the chance to wear it.

What's worse, she took her imaginations to a whole new level. At school, she wouldn't respond to her teachers unless they called her "Thomas".  (We worked on that.)

She had a homework assignment that included a segment on what she wants to be when she grows up. You got it, the Dancing Queen has decided she is going to be "Thomas". She knows he is made of metal, has wheels, doesn't eat, and can't give hugs, but she is certain that when she grows up, she will grow wheels and metal. Last week, she got exciting because she learned that she already had metal in her stent and mechanical pulmonary valve. She decided that meant she was half way to being Thomas! And she claims that she gets plenty of hugs now to last. And she doesn't care that he doesn't eat. (Probably because she doesn't either!) And she determined this week, that when she grows up to be Thomas, she won't have to wear oxygen.

It seems she's got it all figured out!  And I wouldn't dare squash her dreams (even if I have suggested a train engineer is a real occupation).  So, in twenty years, if you see a petite woman coming down the street, dressed as Thomas the Tank Engine, you'll know you've met the Dancing Queen.

Halloween

We celebrated Halloween like most people do--went out trick or treating with the kids at least a gazillion times before Halloween and then topped it all off with a nice jaunt around our neighborhood, collecting more candy. We have so much candy now that it will not be eaten until next Halloween (not that I will allow it be in this house that long).

The kids had an absolute blast though. They loved every minute of it.

DQ dressed as Thomas the Train for the second year in a row. And for the second year in a row, I purchased a different costume that she didn't wear.

Cap'n Hook! I bet you never guessed that was coming.

What's not to love about Halloween? You get to pretend to be something else and people give you candy.

Yes, she was eating a Snickers.

Everyone loved Halloween, even the grannies and my hubby (but he always loves Halloween.)

Halloween was a great night. The Dancing Queen even got a kiss! She was sitting in her grandma's lap, kinda like the picture above with the Mad Scientist. She was handing out candy. And as she leaned over to drop candy in the bag of a boy of age 6 or 7, he leaned over and kissed her cheek! I was so shocked, I didn't say a thing. By the time I came to my senses, the boy had run off down the street.

Unfortunately, the night was not all fantasy and sugar as Halloweens of yore. Pulmonary hypertension has stolen yet another holiday from me. I've been trying to keep it all together with so many unknowns and so little choices, but on Halloween night, it all came out.

I ran back to the house for the stroller because DQ was tiring after only a couple of houses. As I returned, she was being lifted onto the porch of a neighbor and she was coughing, the hacking cough of PH, the cough we haven't heard in so, so long. At that sound, the floodgates opened. My baby will continue to get sicker. She will continue to decline. Her heart function will worsen. Her lungs will be destroyed. We have a very limited window to find her help to slow the destruction. And we are running out of options. We have no choice but to rely upon hope and sheer determination. And with those coughs, I didn't know if it would enough. I didn't know if this would be her last Halloween. And I broke.