What a week!

I can't even believe what a shitty week this has been.

It started last weekend with so much work that there was no time for much of anything except more work! DQ was so bad too. she was misbehaving non-stop. MS and I were both at our wits end. Seriously, DQ spent more time on her room thinking about her behavior than anything else.  Do you know how hard it is to get through to a child in pain that she can't treat everyone around her badly because she is in so much pain?!?! It took hurculean will to deal with her and we still lost.

Monday came and DQ had an appointment with a neurologist in hopes of finding relief from abdominal migraines. The problem was that DQ got a migraine, complete with many rounds of vomiting as we tried to leave. We were late and then DQ vomited many more times in the reception waiting room.

Two hours later, we left the doc with more meds and a lot more questions, including the possibility that DQ's debilitating migraines may have been brought on by sildenafil. I raised this idea years ago , but was told "no, sildenafil doesn't cause stomach ache." After talking to the neurologist and researching on my own Monday and Tuesday, I decided on my own that  it is likely sildenafil has caused this excrutiating pain for the last 2 years!

And the guilt hit. If I had researched more two years ago,  could I have ended her pain earlier?

While I had my epiphany, DQ was still in mountains of pain and thus behaved horribly. At therapy Monday night, MS and I discussed how her behavior was hurting us. It was raw and painful, but we came to some decisions as we drove home to better address her pain and keep us sane.

We got to try it out as soon as we walked in the door as DQ was fighting with my mom.

Tuesday morning, DQ fought more.  I got her to school, but it was not easy. And at 11:00 am, school called because DQ had a nosebleed that led to a migraine. DQ asked to take a nap then and did so until MS could get there. DQ had missed so many days of school already because of pain, then this. My head couldn't help but think we'd have to pull her from school if no answer was found to the migraines.

By 1:00pm, MS was there to take DQ to the dentist (a horrific experience on the best of days). Then the dentist tells DQ she must give up her pacifier because her teeth are showing signs of its use.

Needless to say, DQ did not take the thought of losing her only comfort item in this cruel world very well. Neither did I. I sat there, thinking of my sweet little girl, in so much pain (that may have been caused by medicine I gave her), and we were supposed to take away her only comfort item--her only tool to make it through needle pokes, migraines, and nightmares! I was angry and sad.

Thankfully, after crying quite a bit, our PCP said the dentist was crazy and DQ got to keep her pacifier. Her comfort was and is more important than orthodontia she is not likely to ever get!

Drained from all of that, we had a snow day. I was staying with the kids trying to work,  when I realized I typed a deadline wrong.  I had a brief due on the snow day and not the next day.  I had to draft it all and file it while addressing the needs of the kids!  WTF! I never make those errors,  but I did with that day!

Thankfully,  MS came home early to help. Just as I hunkered down to finish, the cardiologist called. I was calm during the call. I took it in stride. But as you already know, it broke me.  I mean how screwed up is it to get a phone call that made me hope I was giving my daughter toxic levels of digoxin. SERIOUSLY, HOW SCREWED UP IS MY LIFE TO HOPE MY DAUGHTER HAS TOXICITY!!!

After migraines, sildenafil, loss of pacifiers, fighting, emotional trauma, and work deadlines making life hell, I certainly didn't need toxicity or the worse alternative in my life. Our lives. I'm ready for some good news if only the universe would conspire for good and not evil.

Top Ten Things To Do For Parents of Critically Ill Children

When we were funeral planning, I started writing this post.  I just found it today when I was seeing what thoughts I had that hadn't quite made it to the finished product.  The more I thought about this post, the more I felt compelled to complete  it as its been mulling around in my head since October.

At that time, I found myself listing things I didn't want to happen during our immediate grief--things that trigger anger in me; that I know will cause me to explode at an unsuspecting good-doer.  During our funeral planning, I also identified people  who could shield me from the horrible things I've seen well-intentioned people say to the bereaved (and I may have said before I opened my eyes). I started thinking of plans to escape the ignorant statements people spew because it makes them feel better and they've never thought about how it feels to the person who is grieving most.

It is too soon for me to write about all of that. It's not my experience yet.  I only know what I know from watching others mourn.  I know my fear of what people will say to me, but I don't know how I will really react.  I may never be able publish a post about that because too many people troll to start a fight and I don't have it in me even now and when I really have the perspective necessary to write THAT post, I will be way more vulnerable.  That's why I identified people to help me.

What I am strong enough to say is what I know today: what I've lived and what I still live everyday. It is a similar post, but from the perspective of a mom to a terminally ill child. And if you want to troll and tell me I'm selfish, I'll tell you that's right. This post is my top ten wishes of what people would say and do for us.  I think the same is true for all families with critically ill children.  Keep this wish list in mind when your friend or family member has added full-time caregiver to their list of parent chores.

1. Don't ignore that my child has a terminal illness.  I don't mean it has to be a topic of conversation (unless you have questions), but it does mean that my concerns regarding my child with regard to everything have a different depth than what goes into your calculus when thinking about concerns.  While it is perfectly normal and fine to be concerned that your healthy child is having difficulty understanding a concept in math and you are worried that may hold them back academically, don't be annoyed when my child has the same difficulty and I say "such is life".  My child is not going to live to be an adult.  I'm not building her to be a successful adult. I'm building a successful childhood--that includes normal kid things like school, but we don't sweat the small stuff.  The concept will come and if it doesn't, I'm not that concerned.  We are not putting stress on a first grader to be a perfect student. (Same thought process with her still using a pacifier to sleep at almost 7!)
   
   On the same front, decisions about what I can do and where I can go are determined by my children. I can't leave town for a couple nights. I just can't. The nature of heart failure means that DQ can go from fine to on the edge in a matter of hours. Leaving town is not an option for me. I will be too worried. I almost had a mental breakdown a couple of weeks ago when I had to leave town for work. It doesn't mean I don't want to see people who live far away; it just means I can't go to you and I can't meet in the middle. It might not be fair, but life is not fair.
2. Ask questions.  If you want to know why the Dancing Queen looks so healthy, ask! I will gladly explain as much as you want to know.  I've done tons of research about my daughter.  I know her diseases inside and out.  I don't talk about what I know a lot (even if I do talk a lot), but I will gladly share.  I've learned through the years that most people don't want to know what I'm thinking, I've learned, how I feel.  Or at least that is the impression given.  So if you really do want to know, ask.
3. Never ever start a sentence with: "at least". If you hear those words coming out of your mouth, shut it. There is no comparison you can make that won't make the situation worse.  I'm of the opinion that the words "at least" ought to be banned from the American lexicon completely!
4. Remember it doesn't stop.  DQ hasn't been hospitalized for a couple of years (knock on wood).  Part of that is because we do have her in hospice now and can do some things without the ER that we couldn't before.  Despite being in hospice, she is quite stable.  She goes to school and she looks "normal" on the outside.  But she is still in heart failure.  She still has a prognosis that she will not live to be an adult.  It was only two years ago, when her heart was healthier, that we were told she has 3-5 years left.  Because there is no emergency does not mean our worry has lessened or that our lives are any easier.  None of it stops.  I understand human nature is to be concerned for the first five minutes of a catastrophe and move on after that.  We have to otherwise we would go insane since there are so many catastrophes in the world.  But for us, this catastrophe doesn't end.  If you remember that when talking to us, it will give you perspective. 
5. Help.  Especially when we are in the hospital, having big tests, or a illness has struck and we are locked in, help is so welcome.  While we appreciate the offers of help, we do not have the time or energy to call and ask for it.  Real help is showing up and doing it.  Don't expect us to entertain.  One of the best things ever done for us was when my aunts and mom came to our house one day when we were in the hospital and cleaned.  I will never forget it.
6. Food is always welcome!  We love getting food.  There are days when it is just too hard to think about cooking. And most takeout can't be eaten by DQ, so we love food. If you do bring food, please make it healthy and in a container that never has to be returned (they sell disposable bakeware with lids now perfect for this). Having to return a container though is even harder on us than cooking in the first place.  It sits on the counter everyday reminding us again of more things we have to do. It is draining.
7. Be there.  Having a sick and special needs child is lonely. You are constantly taking them to medical appointments, meetings at the school, and pharmacy. Our spare time is spent researching, making appointments, and trying to find ways to help your child feel normal.  (You would be surprised how much time is spent figuring out things to do that let my kids feel normal without making them feel worse about themselves because they have motor delays or heart failure keeps DQ down.)  Having a friend be there--sit and have coffee; come over. If you make a plan for your friend who is a special needs mom, a plan they do not have to make themselves, you will be a hero.  We desperately want to feel normal and be with friends, but don't have the energy to make any other plans.
8. Go to the hospital. Sit on the sidelines, don't expect to be entertained, but be there. Bring veggies and good coffee.  Offer to sit with the sick child so mom or dad can pee or get some food (DQ would never let us out of her sight when in the hospital). Or if you can't be at the hospital, take their other children for a fun day (bring them to the park).
9. Remember the siblings. If you bring a gift for the sick child, do the same for the siblings.  So many times, people feel bad for the sick child. That is proper because the child goes through hell.  But just because the sibling is healthy, doesn't mean they are not going through hell too.  Life in a house with a terminally ill child is hard on everyone.  Can't afford two gifts, don't bring any.  The kids don't expect gifts.  They do LOVE visitors though.
10. Never say "everything will be fine".  That is one of my biggest pet peeves of all.  I hear it in tv shows all of the time too and scream at the tv (ask my husband, he will confirm). You have no idea if everything will be fine.  For us, it won't be fine. When you say "everything will be fine" to your friend, you are dismissing their real feelings in a negative way and diminishing what they are going through.  It is not helpful because it means you do not grasp the gravity of the situation.  Just don't say it!  Instead, you can say "I don't know what to say, but I'm thinking of you and want to be here for you."  Ask your friend if they'd like to share their concerns. Or don't say anything at all, but give a hug.  

I offer this question up to all of my friends who are moms to critically ill children or children with special needs: What would things would you add if this was your top ten list?

The Scream

When the Dancing Queen was in the hospital during her first (or perhaps it was the second) round of her boxing match with pulmonary hypertension, she developed pneumonia following a cath.  She was in the hospital for at least ten days.

One evening, one of my parents came to sit with DQ as she watched "Cars" for the billionth time (or was it "Signing Time"?) so I could grab some food and pee (DQ would not let me leave her eyesight).  That night, I decided to grab some dinner and went to the waiting area to be out of the room that had been my prison for quite some time (admittedly, DQ was more of a prisoner than myself).  While I was there, I engaged in a wonderful, if not sad, conversation with two other heart moms.

The conversation was wonderful because these moms understood me in a way that most other people can never relate and will never relate.  The conversation was sad because it is always sad to be discussing the horrors of children fighting battles against defective hearts and lungs.

Today, I don't remember specifics about what we discussed, but I do know that we each recounted our girls' stories (all of the moms' CHDers were girls). I clearly remember talking about our girls.  It was clear how much we needed our girls and how much we loved them and would do for them.  After an hour, I had to return to DQ so my mom or dad (whomever was there) could head home for the night.

I sat in DQ's hospital room that night thinking about the other moms and the relationships I had with them and all other heart moms.  It is a special relationship, something that cannot really be understood until you are in our shoes (shoes none of us would ever want any of you to walk in).  And I was so happy to be able to sit down with other people in a room and not have to explain the basics of being a heart mom. They just knew. I reveled in how nice it was to have this instant camaraderie and connection.  I looked forward to other "dinners" in the waiting room.

Suddenly, my reflective moment was shattered by the most heart-wrenching scream I have ever heard.  My body tingled just now as I recalled the moment--it was that intense. I knew in an instant what the noise meant: one of the moms I had just talked to, one of the moms who had told me of how hard she and her daughter had fought to be here, had lost her daughter.  The little girl had died.

I wanted to run to my fellow heart mom, to hold her, to absorb some of the pain that enveloped the entire cardiac care unit.  But I couldn't leave DQ.  She was sleeping at that moment, but had been waking frequently and could not handle being in the hospital room without me or someone else she loved in eyesight.  So, instead, I sat in my prison cell, and cried for my new friend's loss.

The next day, when MS came to switch places with me, I tried to find the mom, but she was gone. 


To this day, I've not seen the mom again, but I do think of her often.  I think of her daughter.

And as DQ continues her slow decline toward that same fate, I think of them both more. And that scream, . . .

. . . it haunts me.

Disability Parking

Gosh, was it a month ago? Three months ago?  I don't remember. No matter; quite a while ago, we started the process of getting the Dancing Queen a handicap placard for the car.  There are just times she can't walk far and we end up carrying her.  She is getting heavier now though and we can't carry her far, so we needed to be able to use handicap parking.

I filled out the top of application and the hospice team filled in the rest.  And then the application sat in my kitchen waiting for me to make the trek to the Secretary of State's Office.  I never had the time to stand in line.  I couldn't find a way to fit the SOS into my schedule.  (Or perhaps I didn't want to think about my daughter being disabled.)

Then, we had the day where DQ was tired and I had to carry her to the car.  I didn't have the strength to carry her the entire way and she cried.  Earlier this week, DQ got winded and started coughing walking into school.

I no longer had the option of waiting.  So, this morning after dropping the kids off at school, I went to the SOS's office.  I stood in line.  I sat in the waiting area.  All of it no big deal.

I walked up when my number was called.  I handed over the paperwork and said: "I need disability parking for my daughter."  The woman looked at my form with disbelief, scrutinizing every word.  I could tell she didn't believe I really needed disability parking.  She stated: "Oh, this is for a little one."

Yes, she is six.

The woman asked if it was my signature on the form as I pulled out my driver's license.  "Does your daughter use a wheelchair all of the time?"

Not all of the time, but when needed.  She can walk, just not far.

The woman seemed skeptical and I wanted to scream at her: "I don't want disability parking!  I want my daughter to be like every other child, but I have no choice!"  Instead, I stood there as she scrutinized, judging me and thinking I was cheating the system.

The woman was then satisfied that my forms were properly filled out (even if not quite convinced we were not cheating).  I asked if the tab could be switched between cars and she tersely stated: "As long as YOUR DAUGHTER is in the car, it can be used."

Then she walked away.  She came back with the placard, read the paperwork again and noted "Oops! It's permanent." As she walked back to get the permanent placard, the tears started to flow.

I kept thinking, "permanently disabled."

There weren't too many tears, just a couple that dared to escape.  I discretely wiped them away, as I tried to put the thought of DQ never being able to walk far out of my head.

Then the woman wrote that the placard would expire on DQ's birthday in 2019, and I realized that this tab would likely outlast DQ.  I had to ask what we do should DQ pass away before the tab expires, but I couldn't get the words out.  The woman's demeanor immediately changed (I can't imagine too many people cry at the SOS office).  She knew at that point that I wasn't trying to scam the system.  And she was so kind as I stood there sobbing at her desk.  She didn't make me finish the words.  She apologized to me, told me I just had to bring the tab back to their office, and she ran to grab me tissues.

I couldn't stop the tears and I couldn't leave the building fast enough.  I dropped a tissue on the floor as I searched for my keys.  As I hurried away, a woman in the waiting area let me know of my dirty tissue on the floor, so I had to run back.  All I wanted to do was to run away, to crawl in a hole and hide.  Here I was, surrounded by over 50 neighbors, sobbing like an idiot.  I felt the neon light flash above my head: "DANGER! DANGER! DANGER! Mother of dying daughter! Extreme emotions present!" It was all I could do to escape.

Once safe in my car, I cried my eyes out, pulled myself together so I could move on with my day, pretending to be like everybody else.

The Choice

I had what I consider a deep a conversation with a new acquaintance the other day.  That conversation won't leave me.  It continues to stick even days later.  The conversation wasn't bad.  In fact, I rather enjoyed it (for the most part).

I'm guessing it was a cultural thing, but the woman asked such intimate questions without hesitation or reserve.  I grappled for answers, not because I didn't want to share, but because they made me think.  I like that!

It is one question in particular that lingers though.

She asked me about the Dancing Queen and whether DQ would need other surgeries.  I usually cringe at that question--there is so much to explain so that I don't get people second-guessing our decision.  But, with this woman, the answer seemed to come easily.

Then she asked if I had known about DQ's heart defects when I was pregnant.   I explained that, yes, we knew.

Then, without reservation or pause, she asked why I didn't terminate my pregnancy if I knew.

Of course I knew how to answer the question.  I was asked at the time if I wanted to terminate my pregnancy.

The woman wanted to know if it was a religious decision.  I admit, I laughed at that.  But I told her what I told the genetic counselor 5.5 years ago: Ending my pregnancy was never an option for me.  DQ was my baby before I was pregnant.  I loved her from the moment I felt the pangs of illness and knew that I was pregnant.  There was never a choice.  I had to fight for my baby and give her every chance at life.

I think it was really hard for this woman to understand.  I don't know if it was cultural or because she has not had a child of her own or if it was something else entirely.  I know what she perceived about my life scared the hell out of her.  But she doesn't know DQ, doesn't know the smiles, the love, the hugs.  She never saw DQ dancing in a hospital bed or felt the weight of her hugs.  All this woman knew about was surgeries and hospice.

But I still think about that question each day.  How dare anyone question whether my daughter ought to have had the right to live!

I have no regrets about having DQ.  She, TRex, and MS are the best parts of my life.  Do I wish DQ didn't have to suffer so much pain?  Do I wish we didn't have to think about her dying?  HELL, YES, TO BOTH!

But ending my pregnancy would not have been right.  DQ has so much more joy than pain*; so many more smiles than grimaces; so much LIFE.

And no matter what I have done in this world, my daughter has done more.  I may be an attorney with an "important" job, but she is the one who inspires.  She brings joy.  My life would not have had the same meaning, the same depth without her in it.

If I could have one wish for the world, it would be that everyone understands that no matter how small you are, how short your time, or how alone you feel, you CAN make a difference.  Touch one soul and you can change the world.  I know it is possible.  My daughter has proven that to me!


                                                               

* Or at least she doesn't let the pain take away from her joy. I don't know which.

Night

I wish the same wish every night: Please run to my room and hug me in the morning. Please wake up and yell "mommy". Please don't let this end. Please give me tomorrow. Please find a cure. Please hand me a miracle. Please let me wake from this nightmare. Promise me forever!

And in that desperate plea, the pain is unbearable. Ever fiber of my being screams "there is no other choice but to find somebody smarter; to scour the world once more." I can't give up fighting. Maybe, if I hug her tighter and I wish harder, the answer will come.

And when my mind hits this ridiculousness, I snap back to reality. I flip the tear-stained pillow and claw my way to sleep.

Compassionate Care

If you don't follow DQ's carepage and you don't know me in real life, you don't know that we were forced to decide a couple of weeks ago if we wanted to pursue heart-lung transplant for DQ or choose compassionate care. After weighing everything, we chose to stop fighting DQ's heart defects and choose life, allowing her to be a kid, doing kid things for as long as possible.  It is the only choice that made sense for our family and the goals we set for DQ's life all along.  DQ was officially admitted to hospice yesterday.

Now that we are no longer searching for answers and hoping for "fixes", life has been utterly calm; almost eerily calm.  I think a lot of that has to do with the drop in endorphins from always pushing for the answer.  We've been in emergency mode for over five years and suddenly, we're supposed to just live.  It is very weird to get used to and we don't really know how to live like this. We go through the motions, spend a lot more time snuggling and having fun, but there is a giant sadness that envelops us and rears its ugly head without notice, rendering each of us catatonic, weeping, or raging, depending on the day and the direction of wind.  We are working through it all together though. And, thankfully, we haven't all broken down at the exact same time, so there is always someone stronger to help us through.

TRex  has been mostly silent, but he is always thinking about his sister.  He is concentrating on the practical aspects.  For instance, this morning, we discussed how little DQ is and she asked if she would be taller than me when she grew up.  TRex responded "you won't live 10 years DQ, so you'll never be taller than mommy."  How am I supposed to respond to that?  She probably won't live 10 years, but I don't want her to give up as if it is inevitable.

Two weeks ago, as we sat at dinner eating homemade, gluten free corn dogs, TRex declared that when he was an adult he was going to the zoo and eating real corn dogs because DQ wouldn't be with him.

And around that same time, he let us know he was discussing DQ's prognosis with his classmate.  I can just imagine the surprise on the other first grader's mom's face if he brought it up to her! It is too bad I know only one other mom at the new school, so I couldn't warn her in advance.

DQ on the other hand, is terribly worried about being alone after she dies.  She is afraid we will forget her and will no longer love her. (Of course, we let her know our love will never end, even at death.)

The Mad Scientist remains the solid, unwavering man most of the time, but does allow himself moments where reality sets in.

Me . . .  I don't know.  I've been angry at times.  I've been very tired, but I don't think that is depression, but more closely related to inadvertently ingested gluten.  Mostly, I'm not sure what to do with myself.  How do I just sit back and let heart disease steal my baby?  I'm not sure how to not fight.

Sleepless

I've never been a good sleeper.  In fact, I am the biggest loser of sleep.  It would take me hours to fall asleep even as a child.  I had no idea that people actually fell asleep within minutes of laying down. I simply assumed it took hours for everyone until I moved in with the Mad Scientist.  He even used to try to teach me how to go to sleep. It never worked.  I could never turn my brain off. Laying down was usually the first point in the day that I had just to my thoughts, so I would think. I couldn't stop myself and it would keep me awake.

Lately though, I'm not sleeping, but this type of not sleeping is different. I stay up late, despite being desperately tired. I just can't get myself to go to bed. I tell myself I'm too tired to climb the stairs.  But that's not it really.  I sit and watch brainless television or play ridiculous games until my eye lids are so heavy they can't possible stay open. And then, I climb the stairs and fall into bed.

Last night was even more ridiculous than normal. I had only about three hours of sleep the night before because DQ had been up off and on coughing (she has bronchitis).  All I wanted to do for the entire day yesterday was take a nap, but I couldn't.  There was too much to do.  The Mad Scientist and I ate dinner around 8:30 as our norm. At 10:00 p.m., he went to bed. Despite having almost fallen asleep on the couch watching tv, I stayed up. It hit 11:00 p.m. and I still couldn't force myself to go to bed. Finally, at midnight, I got up and went to bed, thinking the only way my eye lids could stay open was if I used toothpicks. I could barely get myself up the stairs.  After kissing TRex and DQ, I laid down and fell asleep immediately.

I was so angry with myself this morning--blaming my exhaustion on staying up playing Candy Crush Saga and Ruzzle. When I dropped TRex off at school, all I could think about was "how will I make it through the day?" When we walked into the building, one of the dads asked where DQ was that morning.  I explained that she was home sick with her daddy.  The dad responded "I hope she gets better soon." and went on his way.

As we made our way to the cafeteria where TRex attends the before school program, he asked me when DQ would get better. I replied "her bronchitis should clear up in a week or two."  He insisted that I go further, asking me "But mommy, when will she get all better?" Of course, I had to tell him she wouldn't. He was sad and clung to me tight as I said good-bye.  He didn't want me to go.

The woman in charge of the before school program asked if TRex was alright. I told her no, but he would be. I had to explain further since I wanted him to feel safe when I had left the building. In my tired state, I told her that TRex wanted to know when his sister was going to get better, but she's dieing and there is nothing we can do. I sobbed in the middle of the elementary school cafeteria, all the while trying to hide it from TRex.

As I drove away, instead of listening to the news, I was left alone with my thoughts. "How could I say DQ was dieing? What made me cry in the middle of the cafeteria? Why can't I keep my faculties in check?" I screamed at myself: "THIS ISN'T ME!!"

I then started to bargain with myself. "If only you weren't so tired, you would have held it together. If you hadn't stayed up late watching stupid tv, you would NOT HAVE CRIED IN THE CAFETERIA!"

In yelling at myself though, I realized none of it is mindless games and late night tv. I don't want to think about my baby possibly dieing. I didn't want to do it in the cafeteria and I don't want to do it at night. I don't want to think about it!  But late at night, unless I'm too exhausted to think, I do think about it. I can't help but think about my sweet, sleeping children, happily dreaming in their beds and how reality is hurting them.  When I don't pass out from exhaustion, I can't help but think about DQ's upcoming Pinkalicous birthday party and how this might be her last birthday. My mind won't let me escape the worry over how to help TRex and DQ cope.

But, if I stay up way too late, doing nothing but occupying time--doing the trivial and meaningless--my brain will focus on something other than my thoughts and feelings.   If I force myself to stay awake doing something, anything until I'm certain I will fall asleep immediately, I won't have to think about what I don't want to think about.

So, I'm exhausted due to lack of sleep. I have many nightmares when I do sleep. And, in the light of the day, I'm not emotionally prepared to deal with questions or things that come up because I won't let myself ever think about my feelings about DQ's prognosis.

But now I know and I can begin to work toward a healthier way to deal with it all.

Dragon Mom

Dragon Mom.

DRAGON MOM.

Am I a Dragon Mom?

I heard the term "Dragon Mom" for the first time almost a year and a half ago when I read a poignant op-ed in the New York Times by Emily Rapp.  A Dragon Mom is quite the opposite of a Tiger Mom; she is the mom to a child who will die young and she knows it.  There is no stopping the inevitable, so parenting becomes more about sharing love, smiles, and now, rather than creating building blocks for long-term success.

When I read the op-ed, it stuck with me.  I had of course heard of Amy Chua’s “Battle Hymn of the Tiger Mother” and read articles about it. But I knew that wasn't me.  I knew then that I was more closely aligned with the Dragon Moms than I was to any Tiger Mom.  I even wrote about how I was not a Tiger Mom in a January 2012 post right here on this blog.

But, I clearly remember writing that blog post and thinking "should I add in my thoughts on where I fit as a Dragon Mom?"  The problem was that I felt an affinity to what the Dragon Mom was saying and feeling, but I still had plans for the Dancing Queen. I was still holding out hope that DQ would have a future. I felt conflicted at that time about not wanting to be in either world. In the end, I only wrote about not being a Tiger Mom. I took the easy way out by ignoring the giant elephant in the room.

I realize now that didn't write about Dragon Moms then because I was protecting myself.  I didn't want to admit out loud that part of me associated very closely with being a Dragon Mom.  I mean, how could I think my daughter won't make it to adulthood?!? How could I give up on my sweet baby? How could I not fight with every ounce to get her to adulthood? Wasn't I told all of the time how far medicine has come!?! Isn't my job to do everything in my power to keep her alive into adulthood!!! If I admitted that part of me felt like a Dragon Mom, wasn't I saying that I didn't believe my daughter could ever grow up?!?

And now we've been told that the Dancing Queen will not make it to adulthood.  She won't grow up.

Does that mean I should become a full-on Dragon Mom? How do I know what to do? None of the doctors can tell me what to expect. Does she have a year? Two? Five? Nobody knows how quickly she will decline.  All they know is she will decline and that she won't live to be an adult. The Dancing Queen still has to be around other people. She will still go to school.  I can't let her do whatever she wants and become a brat.  It is hard enough on her now thinking that no kids want to play with her because she can't keep up.  And I can't very well let her eat whatever she wants for dinner either--that can cause her to decline more quickly and be in frequent pain. 

How can I help her enjoy life as much as possible and live every moment to the fullest while still letting her be part of society?  Where is the proper middle ground? How do I know what is best? Where's my self-help book--Raising Your Terminally Ill Pre-Schooler?

Fuck it all! I don't want to be a Dragon Mom!

You Don't Know

It seems that I only come back to this blog these days when life is too hard, too messy, too much.  I think that is okay.  I created this outlet because too many people judged my feelings and my choices when I posted to the Dancing Queen's carepage.  I wasn't allowed to worry.  I wasn't allowed to question "what if".  I wasn't allowed to worry about other children dieing.  All because it made friends and family uncomfortable with the thought that the Dancing Queen could also die.  I was told that I shouldn't put my energy into strangers I've met on the internet because it only made me sad and introspective.  But, the thing is none of those same friends and family have any true idea of what I go through.  And when I tried to open up, I was shot down and told "don't worry."  Who are you to tell me not to worry? Are you responsible for trying to find an answer? Have the doctors told you they can't do anything? Have you sat in the room with a surgeon minutes before your daughter was going to have her third open heart surgery to be told they would NEVER be able to fix her main problem?

And now, years later, the Dancing Queen appears so well that when I say I'm concerned that the doctors won't be able to help her, I get the same thing--it's no big deal; she looks great! That's all fine and good, but I watched her today in swimming class.  She isn't strong enough to lift herself off the side of the pool to slide into the water.  She tired from walking the 15 feet of the pool, so much so I thought she might collapse in the middle.  She can't keep up, no matter how hard she tries.  So, yes, she looks good, but you don't know what you're looking at!

For the past several weeks, we have been in the process of getting more information as to why I've seen DQ decline over this last year.  The cardiologists found a significant problem.  They told us they could fix it. Then they said they can't.  Now they are saying they might be able to, but won't tell us how and whether it will require another open heart surgery.  Or we just might have to let it be, which will only make things worse. So much uncertainty, but she looks good. Heart disease is a silent killer! You can't see it lurking beneathe the surface, but you pretend all is fine.  It's not you who has to look for minute differences.  You're not responsible for keeping her alive!

You're not the one who has to pry her little body off of you when you drop her off at school in the morning because she doesn't want to stay where the other kids get to go outside and run and she can't.  You don't have to remind her that the cold air makes it difficult for her to breathe and that is why she stays in.  But, she looks so good.

And you've never had to explain to a 4 year old that it wasn't likely to get better.  You didn't answer the questions: "Mommy, when I'm a mommy, will I still be sick?"; "When I'm a mommy, will I still not be able to play outside?" Did you have to explain to an almost 5 year old that her heart and lungs were the best they would ever be, so when she was a mommy, it would probably still hurt to be in the cold.  Did you grasp for some silver-lining for her; promising that as a mommy, she'd be able to make her own decisions and could go outside if she wanted. And all the while, you begged yourself not to cry because the likelihood she will ever be a mommy is so very slim.

I know she looks good to you. And I know she is much healthier than she was at 2.5 years old, but she not quite 5 and is doing worse than at 3.5.  Instead of getting stronger, she is weakening.  Instead of being able to walk farther, she is traveling less.  Don't let the smile fool you and don't discount my genuine worry.  You have no idea because you won't look past the surface.

Explosion

TRex asked me the other day if people could explode. I told him people could explode under the right circumstances, such as swallowing dynamite, but that he didn't need to worry about it. He accepted that answer and went on about his day.  I forgot about that interlude until I sat down at my desk today, thinking of the week that has just transpired. I couldn't hold it back any more and I wept, big fat air-gulping sobs. I had exploded.

I can't believe how much life has changed in the last week.

First, we had the Dancing Queen's annual IEP meeting. I don't know if you've ever made an IEP for your child or even know what it means, but it is emotionally draining and extraordinarily hard to think about accommodations that may be needed for the next year for your child.  You have to think about what will she need if she has another open heart surgery as you've been warned is possible. You have to think what happens if they can't operate. You are forced to think of the hardest things. And despite loads of preparation, I still crumbled into a ball during the meeting and cried.

After the IEP meeting, we got a message that TRex was upset at school. We called and he wanted to know why Rookie had to die. Then of course, the Mad Scientist and I had to put Rookie to sleep.

That was Friday.

Friday night, the Dancing Queen was up most of the night coughing and gagging. She started vomiting on Saturday. By Sunday, she couldn't keep anything down and refused to eat or drink.  On Monday, she ended up in the ER because of dehydration caused by a simple cold.

Tuesday, DQ was home, but still not eating or drinking and we debated about taking her back to the hospital as she just slept. TRex, upset by it all, took his fears out on a classmate and his teacher.

Wednesday, DQ still wasn't really eating or drinking much and wasn't peeing at all, yet she woke up with a swollen face, showing that her heart was not working properly.

Thursday, I got her to eat and drink a little. She went to the doctor and we learned she had lost half a pound due to her illness. When you only weigh 26 pounds to begin with, half a pound is huge!

Thursday, she peed once for the entire day. Just once.

Through it all, I was keenly afraid that I could lose her to a heart attack from dehydration.

DQ went back to school today, but only after she was up all night coughing and crying out in her sleep.

To top it off, with DQ sick, me working a ton, and the Mad Scientist sick, we have lost control over our house. It is so overwhelming. I need a week to throw everything away just to be able to breath in there, but I don't have a week. And we need to sell our house or rent it or get rid of it some way. I don't have the time to clean, let alone to talk to realtors and mortgage brokers.

Then throw in the "little" big things that are piling up. I have to find someone to watch TRex this summer when school is out. I don't even know where to begin. DQ needs to have her periodic abdominal ultrasound to check for kidney cancer. I haven't had the chance to look for the script, let alone find a morning to take her.

I have been so worried about DQ's noticeable cardiac symptoms as well. She was supposed to see her cardiologist this week, but couldn't because she was sick. So, once again, we wait and worry. 
 
Of course, it was this week that I really thought about how bad I have been feeling for so long and how much worse I am getting.  I feel ill every day of my life. A change needs to be made. I know what that change is, but I need help to make it because the change is so hard. I don't have will power. Yet, I have no help, and am faced with daunting temptation everywhere I turn. It is too much to do alone, but I have no one to help me. And since I can't do it alone, it won't happen. It will only get worse.

I am so overwhelmed. And sick. And slow.

It is no wonder I exploded.

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.

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.

Where Everybody Knows Your Name

Our family has been breakfasting at the same restaurant since before we were a family. The Mad Scientist and I happened upon the little place back when we were dating. Before he ate breakfast food. Before we were engaged. Long before kids.

We don't go there every weekend, but we are regulars. And the place is small and family owned, so the staff is pretty much the same as it was 8.5 years ago when we first started going there (although the location is different).  Everybody knows our names and has watched our family grow from the month before our wedding when I had to sit outside while the Mad Scientist grabbed our food to go because I had shingles (stress from wedding planning amidst the deposition schedule from hell) to this morning, as the Dancing Queen munched on breakfast enchilada and TRex ate his regular pancakes and scrambled eggs, followed by chocolate covered strawberries of course.

February 2010, TRex enjoying a strawberry.

Summer 2011, DQ enjoying a strawberry.

They watched as my belly grew with a baby TRex until he was a toddler and I had baby DQ on board. They worried with us as they saw TRex come in with only one of the Mad Scientist or I for months and no little baby by our side. They met DQ with a feeding tube in her nose and have witnessed her medicine routine (which is always given after breakfast so that she will eat more).  And they know us so well that when TRex and I show up on a morning, they immediately ask how DQ is since they know she is in the hospital and we're trying to give TRex a special treat. We stopped there on the way home from the airport after flying to California. They asked whether the doctor could help.

Summer 2009

Summer 2009

You get the picture. They know us.

This morning, however, I was taken aback.

This morning, as the Mad Scientist took TRex and DQ to the bathroom to wash the chocolate from their fingers, one of the waitresses caught me off guard. We were discussing the amount of enchilada DQ left behind and how well she is doing eating. The waitress asked how old DQ is now and I said she will be 4 in March. She then asked about TRex and I said he is 5.  She wanted to know how far apart the kids were and I said "17 months." She responded with a "wow".  Before I knew it, I said "Yeah, if I had known she was going to be so sick, I wouldn't have had the kids so close together."  She responded, "But DQ doesn't look sick. She always tells me stories and makes us smile." And at that moment, DQ came bounding back from the restroom, exerting more energy than she had stored, but making herself appear the picture of health.

I didn't have time to explain to the waitress that it doesn't matter what she looks like on the outside, DQ is sick. Just because you can't see it, doesn't mean she is fine. I really wanted to say these things, but the moment was lost. And hours later, I'm dwelling on it.

I don't really know why I'm letting it bother me. These people don't read the carepage. They don't know a lot. They see us. They've seen DQ much sicker. But, this one particular waitress has sat down with me for a good long time, asking questions about DQ and her surgeries and life.

I'm used to most people discounting what we go through, thinking everything is fine because DQ is not in a hospital bed and nobody sees all of her scars. But when I take the time to try to explain her condition and still, it is not understood, that is hard. I try to raise awareness all of the time so that more people will understand a little of what we go through, of what all heart families go through. I feel in my bones that if more people understood, they would want to do something and research dollars could be raised. I know the only way the Dancing Queen has a chance at a longer life is if breakthroughs are made today in research. Yet, if I can't get across the severity of what we live when I sit down with a person who was genuinely interested one-on-one, how can I expect to make a difference with anything that I do?

And therein lies my quandary.  I'm not going to stop trying to raise awareness. It is almost February afterall. But it does make me wonder how we can get the message across better?

The Cost of a Wish

It has been almost an entire month since I've blogged here. A month. I'd like to say that is because I have been way too busy to blog and when I get a couple of minutes to myself, I play Angry Birds. While that is all very true, it's not why I'm not blogging. (I've already beaten all the Angry Birds levels and have been cleaning it up to get 3 stars on every level.)

I haven't been blogging because I don't have a lot of positive to say and I hate that this blog has become so negative. Unfortunately, my lack of blogging has also made me feel without a way to get "it" out. So, today I blog. I blog for me.

Since we last met, a lot of things have happened. I was named one of the 20 up and coming attorneys in the state of Michigan. The Dancing Queen started immunoglobulin therapy, which is an additional 2.5+ hours each week to give, but is helping her so we're happy. We took the Dancing Queen's wish trip to Florida. There was the holidays. And I've been crazy busy at work.

On the surface, all of these are wonderful things (yes, even being busy at work). And I posted about the big event, the wish, on DQ's carepage and elsewhere, had my happy moment, and now I'm left with what it all really means.

The biggest weight on my mind has been the wish trip. Don't get me wrong. It was amazing and wonderful. I've copied my positive update in the post below, so people don't think I'm not grateful, that it wasn't the trip of a lifetime, that I didn't make memories that will last forever. I did. But, I also had moments that will haunt me.

When DQ was granted her wish, I was so happy for her. I wanted her to have something positive in her life, something to look forward to. I knew why she was nominated and why she was granted. I was the one who contacted Make A Wish afterall. And I specifically contacted them when I did because I didn't know if DQ would be around to make a wish as an older child. I did this. I knew it. And in the year that we planned this trip, I never once felt that this wish trip was anything more than a wonderful experience for my sweet daughter who had gone through hell her entire life.

And yet . . .

The week before we left, we received a check in the mail to cover baggage costs on the flights, gas for the rental car, meals in the parks, and souvenirs for the kids.  Make a Wish had thought of everything so we could have a true experience without worry. At that moment, it started to hit me. This was something beyond nice being done for us. Total strangers were giving us the trip of a lifetime, were taking care of us completely. I felt totally guilty.  We didn't deserve this.

Then, the limo picked us up. We were greeted at the Orlando airport by a volunteer from Give Kids the World. When we got to the village, everything was taken care of for us. There were gifts for the kids, snacks. We were handed thousands of dollars worth of tickets to theme parks.  And at the parks, we got to cut in line for rides or to meet characters. We were first, no matter when we arrived.  The guilt I felt was enormous.

But nobody said anything. Nobody gave us dirty looks. People clapped when DQ hugged Lightening, even though she had cut in front of several dozen kids to meet him a second time. People took one look at DQ and her magic button and stopped to talk to us and make sure we were having a wonderful vacation. Everyone was so very nice.

And in the middle of the first day, it hit me like a ton of bricks: the reason for all of this was because my precious daughter has several life-threatening illnesses. It became more real for me than ever in that moment. I no longer felt guilty, but angry that she had to be so sick to be treated so well. And, in my mind, I challenged someone to complain about our special treatment. I wanted to yell "The price we paid for this royal treatment is our daughter's life!"

And at the same time, I felt incredibly sad. I so wanted to trade it all back. I wanted to stand in line for hours, hearing my kids ask hundreds of times "is it our turn yet?" But, we were on a wish trip because nobody can fix my daughter.

And not a sole complained the entire time we were on the trip. They all knew the price we had paid. I didn't need to scream it at them. They saw it on DQ's face, especially by the end of the week, when DQ looked obviously ill.  Perfect strangers could tell DQ was ill. And not just ill, but fighting for her life. And realizing that truth emotionally, for me, was harder than the guilt.

So, while I can look back and smile at the things we did and cry tears of joy at the memories we created, each time I look at photographs of the specific day the Dancing Queen's wish came true, the first thing I see is a swollen, purple little girl, whose heart was overworked and lungs couldn't keep her oxygenated. And I then I am overwhelmed with the emotions from that day: extreme happiness mixed with utter despair. Why did it have to be her!

(Perhaps you can't tell from this picture, but DQ's lips were purple/blue, her fingers were purple past her first knuckel, and her cheeks are so red because they were stretched out beyond normal due to swelling in her face from blood backing up.)

I will be forever grateful for the gift that was given to our family. We had a week together, without work, without hospitals or doctors, without most of the worries of our everyday lives. We made memories that will make me smile for the rest of my life, but along with that, I will never forget how it made me feel to realize how the rest of the world sees my baby.

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.

Every Heart Has a Story: Pulmonary Hypertension

My first time in the cramped, dark office, I was eight months pregnant, listening to him explain truncus arteriosus, the congenital heart defect they thought my unborn baby had, and the surgery she would undergo to help her survive.

My second time in the office, I was in a wheel chair, having recently given birth. My baby, the Dancing Queen, had just had her first heart catheterization at one day old and he explained to us the heart defects she actually had (tetralogy of fallot with pulmonary atresia) and the surgery she would need at three days old.

My third time in the cramped office, he was letting us know that he had no answers. He did not know why DQ was not getting better, why she was still so sick several weeks after surgery. He explained that he may have to go in and replace the shunt he had placed, even though he'd never done it before. He had no answers . . .

So, a year later, when I entered his office for a fourth time, with my one-year-old on my hip, I was understandably shaken. I sat on the worn couch, looking out the window, hoping not to cry. Today, I can't remember if I did cry or not, but what I do remember is his answer to my question of whether DQ would have more energy, eat better, be more like an average kid after her surgery. His response was "no". He said she was already a pretty active child and likely wouldn't have the 180 turnaround that so many other parents saw with their children. I chose not to believe him. I wish I would have.

DQ a week before her surgery in 2009.

In April 2009, a 13 month old Dancing Queen underwent her "full-repair" (patched the huge hole between her two ventricles, shaved her stiff and thick tricuspid valve, widened the pulmonary arteries, and patched the aorta so it didn't open above the outflow and the inflow of the heart), but the surgeon merely called it a tune-up. If only I had heard that statement for what it really meant. I assumed the doc called it a tune-up because the homograft they used to connect her heart to her pulmonary arteries would need to be replaced, not that she would need any other type of surgery. And even after DQ was in the hospital for 3 weeks post op, was on a ventilator for a week, and had to be re-intubated after the vent was first taken off, I still thought she was going to be amazingly better after her repair. I held an amazing optimism.

DQ immediately post-op April 2009

Instead, after getting home, DQ remained fairly weak and actually got worse. She spent a lot of time that summer in the hospital, sick. Finally, in August, it was determined that DQ had pulmonary hypertension (elevated pressure in the pulmonary arteries, which was causing her heart to work extra hard, damaging it, and causing damage to her already small pulmonary arteries). I didn't know much about PH at that time, so I googled it. That was a bad idea. (Much of the data on the general web about PH gives grim prognoses--less than 2 years to live after onset.)  After reading a couple of pages, I stopped, too scared to even think of the possibility. I held onto the one positive nugget I found: if the underlying cause can be corrected, PH can go away. I figured the docs would determine why her CHDs were now causing PH. DQ's cardiologist had mentioned that DQ's right pulmonary artery had pinched down following surgery and that could possibly cause the elevated pressures. She did indicate that would be highly unusual, but I ignored the doubt and hung on to only positive possibilities.

DQ learned to stand in a hospital bed in June 2009 at 16 months old.

In July 2009, DQ perfected standing in a hospital bed.

In September, DQ had her fifth heart catheterization and the doctor ballooned and stented her right pulmonary artery where it had been pinched. It was believed at the time that the simple stent had reduced DQ's pulmonary pressures. We were told for the first time after that cath that DQ had moderate pulmonary vascular disease. Her pulmonary arteries are like a tree without leaves rather than a tree with leaves as they should be. We were told the stent, with the increased blood flow, should help those PAs grow along with lowering the pulmonary pressures.

A follow up echocardiogram confirmed the lower pressures. I was ecstatic at the numbers. I held on to those beautiful numbers, waiting for the miraculous turnaround. But all that I saw was DQ not doing well. She continued to do worse. I kept having to call the cardiologist because DQ was swollen. We kept having to up her diruectics when the numbers said there was no need for the medicines. Yet, I still let myself believe the positive.

In December 2009, DQ saw the ENT because she kept getting ear infections. The ENT wanted to place tubes, but needed cardiac clearance for the anesthesia. It was at that appointment that we learned DQ still had pulmonary hypertension (the previous echo had been wrong). It was at that point that I could no longer hide behind the positive.

DQ's cardiologist explained that DQ's PH was likely caused by the pulmonary vascular disease (hypoplastic distal pulmonary arteries) and, accordingly, could not be treated through any means currently known to science. She suggested we see DQ's pulmonologist, but left us with a grim reality.

The next week, DQ and I waited two hours to see the pulmonologist. When he finally came in, he listened to my story, and said he had nothing. He ordered DQ to be placed on oxygen at night to help her lungs get a break, but he gave me no other hope. When I asked him the prognosis, his response was "you already know how bad this is. I have nothing more to offer you." Needless to say, our holidays were not that great in 2009. We grieved a lot and spent a ton of time together as a family, loving our very sick little girl.

This picture was taken the day after meeting with the pulmonologist. Ma tried to help distract us with cookies! Or was she just trying to soak up as much of DQ as she could? I think it was both.

While the holidays had a very grim shadow, we did still have some fun.

When I wasn't spending time with DQ, I was making calls. I was searching the internet. I was posting requests. I did everything in my power to find every pediatric PH specialist in the country. I contacted them all. Almost all of them responded to me with a fairly uniform answer: "PH caused by pulmonary vascular disease cannot be treated."

By the end of January 2010, I was desperate. I left messages for DQ's cardiologist, but the messages never seemed to get through. So, I finally sent a fax to DQ's cardiologist with a huge list of questions. Within an hour, she called me back. An hour later, DQ had a cath set up for the next week. The local docs were no longer going to give up on my girl and I wasn't about to stop trying to save her.

At the beginning of February, she had her 6th heart catheterization. The docs learned that DQ's lungs responded to nitrogen, so they started her on revatio (a.k.a. sildenafil, a.k.a. viagra). But, she developed pneumonia and stayed hospitalized for 10 days. Upon discharge, we weren't given any promises and were told good luck.

DQ in the hospital after that February cath and pneumonia. Here, she is watching "Cars" or "Baby Signing Time", her favorite videos then and now.

Through the next several months, I continued to search for another answer, as we grew more and more tired from having to give Revatio three times a day, meaning staying up until 11:00pm every single night to give the final dose of the day. And yet, each time DQ went to the cardiologist, nothing would change.

Finally, in April or May, as I stood by DQ's hospital bed (respiratory virus), my cell phone began to ring. It was a PH specialist from California. He was the first doctor who did not dismiss DQ's case as hopeless. He offered to see her.We just had to get her healthy, keep her healthy, and find a time to travel.

We waited and waited and finally, DQ went to see the PH specialist the end of July 2010. She had a cardiac MRI and examination. After it was all said and done, the PH specialist stated that DQ's pressures were likely originating from her heart because of her valveless conduit and a pseudo-aneurism in her conduit (things we knew about for over a year). He also explained that it was typical for someone with DQ's mix of CHDs to start declining without real explanation or solution, but just not usually as quickly as she had. Usually, the decline starts in the teenage years. He suggested that DQ's best possibility was replacing the conduit with a valved one. He didn't think that would solve everything and may not work at all, but it was the only idea. He pushed to have the surgery completed within a month so hopefully DQ's damaged heart could start to heal.

Just arrived at our hotel after a long flight.

Enjoying an ocean view.

My sweet girl, chillin after a long day at the ocean, following two very long days at the hospital.

Upon our return, I spoke with DQ's primary cardiologist.  She didn't think surgery was going to help DQ either, but didn't think it would hurt. She had no other ideas and left it up to us, saying she would support either choice. We opted to talk with DQ's surgeon, but he was on vacation.  So, we spent August on pins and needles, not knowing what to do.  Should we put our child through another open heart surgery? If we do it, will the local surgeons agree with it? Should we have the local surgeons operate if they agree, but don't believe it is necessary? Should we have the surgery done in California, so far from home with doctors and nurses we don't know and don't know DQ? There were so many unknowns and one sick little girl.

Finally, the surgeon talked with DQ's primary cardiologist and indicated that he thought DQ should have surgery. He would do it and he would put DQ on his calendar, but first we had to come down to his office, that same cramped room with the same worn brown couch, for an examination.

And so, I entered that cramped office once again in late summer 2010, still not knowing whether the surgeon agreed to the surgery because we were going to do it anyway or if he believed it was the best option. I wasn't going to hand my baby over to anyone who didn't believe in what they were doing, even if I had trusted them over and over before. Fortunately, we left knowing that everyone was in agreement.

On Monday, September 20, 2010, I handed my sweet toddler over to the surgeons once again. She left me, drugged out on versed, thinking her pacifier was a riot around 7:40 am. Seriously, she was waving it in front of her face, giggling. Around 9:45am, we were told the surgery was starting. It takes a good two hours to get all of the lines in and anesthesia properly complete. It took over an hour to get through DQ's sternum because of all of the scar tissue she had from open her chest multiple times. She went on the heart-lung bypass machine around 12:30 pm and came off around 4:00pm. At 7:00pm, they came to get us so we could watch our girl on her way from the OR up to the PICU. I gave her one more kiss.

Playing in pre-op.

Giggling at her pacifier, doped up on tons of versed.

It took 11 hours in the OR to make our miracle happen. What wasn't evident from images produced by numerous echocardiograms, heart catherterizations, and an MRI was that DQ's tricuspid valve had a huge hole between two of the leaflets, her PFO remained open (small hole to upper chambers of the heart), and the stent that had been placed in the right pulmonary artery the year before, was blocking blood flow to the left lung. On that Monday, my favorite surgeon fixed all of those things and he replaced DQ's right ventricle to pulmonary artery conduit with a valved, porcine (pig) conduit.

DQ immediately post-op, September 2010.

My baby was able to come off of the ventilator the very next day! She was home by that Saturday. She was miraculously better! So much better than anyone had hoped.

A couple days post-op, looking ready to go home.

Exactly one week post-op, home and doing well.

Eleven months later, DQ's pulmonary pressures have decreased. They are still higher than normal, but no longer dangerous. She is still dependent upon a lot of medications that the docs wouldn't expect, but since they help her, we continue their use. DQ's last echo was a couple of weeks ago and her heart has continued to get smaller (a very good thing) and the leak in her tricuspid valve is almost non-existent. These are all signs that surgery was a success and my push to find answers so worth it. My baby's heart is the best it ever has been and will be.

The surgeon did explain that there is nothing he can do for her distal pulmonary arteries though. That he cannot make them branch and grow. And unlike most cases, DQ cannot have more stents inserted into her main pulmonary arteries to make them bigger so that the distal arteries can grow. Placing any stents will only cut off blood flow to the other parts of DQ's lungs because of their odd placement.

So, we hope with time and better health that DQ's pulmonary arteries will grow on their own. But we were warned that if they don't grow more than proportionately, we will be in the same place again, but without anything to fix. At some point, without extra growth, DQ's pulmonary arteries will no longer be able to sustain her and the pressures will increase again because her heart will start working harder to try to force blood to the lungs to get oxygenated better. And at some point, she will be desperately sick again. I'm holding out hope for new technologies and medications.

Practically speaking though, I am enjoying my time with my beautiful daughter, soaking her up. Trying not to let her precarious future take away from her love of life.

Dancing Queen in August 2011.

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The Dancing Queen's story from conception and my post from last year's Every Heart Has a Story can be found on the navigation bar at "Dancing Queen" and a fuller description of her heart defects is on the navigation bar at "I'm a Heart Mom". I also maintain a carepage for DQ that is just about her health and specifically her story. If you want to know more or want to follow DQ, send me an email at momonaline (at) gmail (dot) com.

Finally, if you haven't stopped by Stefenie's blog and read the other heart stories posted there, please do so. Or, if you are a CHDer or a family member of a CHDer, write up your heart story, and link-up with the rest of us.