Sunday Mornings

What do you get when a 23 pound almost 3 year old drags around a 20 pound plastic, moving dinosaur?

Lots of fun! 

Did I mention her brother wanted her to carry said dinosaur up the stairs by herself?  They were chasing the cat.  The cat's no fool, Elmo warned him, so he escaped . . . or so he thought. 

My three monsters are currently upstairs tormenting the cat.

I love Sunday mornings.

Eureka!

Very proud to say that the Mad Scientist and I figured out why Caillou is bald.  It all came together while calm down tv played this evening.

Zanax.

The answer is Zanax.  It is the only explanation.  Both Caillou's parents must be stoned out of their mind on Zanax all of the time.  Otherwise, how can you explain how they remain so even keeled amongst all of that whining.  Due to the massive amounts of Zanax while pregnant, Caillou lost his hair.  Or he got a hold of the bottle during one very special episode (I hope you said that in the tone of a "Blossom" special episode, that was what I was thinking).

Don't you feel better knowing why Caillou is bald.  I know I do!

Relief

I wanted to thank you all for your thoughts as I took the Dancing Queen to her appointments today.  I just did a huge post on her carepage, so I will say here that everything went much better than I expected.  The Dancing Queen's heart is in better shape than it has ever been.  It is still not great, she still has elevated pulmonary pressures, and she still requires medicines she should not need, but we were specifically told she is as good as she is going to get heartwise.  She also managed to keep her GI doc happy enough that the g-tube was once again a dismissed idea.

I'm not sure how I feel about all of this.  I am very happy to hear that my baby is doing as well as can be expected, but it is hard to know she is not ever going to be any better.  She tires easily.  She still turns blue on us from time to time.  She is one virus away from catastrophe, but as we hear all of the time these days, I have to get used to the new normal.

Competition

Why does it always feel like a competition with my children?  If I make it to work and neither child caused me to go to a corner and rock back and forth on my heels, I win!  Otherwise, I lose.  I don't think this is how it is supposed to go.

For the record.  Today, I lost.

Freak Out Mode

I am in total freak out mode.  And by total, I mean T.O.T.A.L.

Friday is the day I dread every couple of months (or weeks, depending).  Friday, the Dancing Queen has a cardiology appointment.  Oh how these appointments make me worry, make me fret.  My insides turn to mush.  I want to do nothing but hide my baby and pretend like she is fine.  Of course, I also want her to be seen so that I can be told that everything is fine.  However, we have never been told everything is fine and I highly doubt that will happen Friday either.  (Cardiologists won't even tell me life expectancy, so getting a "she will be fine" is virtually impossible.)

The Dancing Queen has had too many cardiology appointments for me to remember, but only two of them contained goodish news did not convey bad news.  The first appointment where we were told nothing bad turned out to be wrong! At the next appointment, we learned everything that had been said was in err and lots of bad had been going on.  The second time we were told nothing bad was the Dancing Queen's last appointment, during which we started to reduce meds because the Dancing Queen was allegedly doing well enough.  Within a week of that appointment, the Dancing Queen had to be placed back on the meds that were reduced because her heart couldn't handle being without them, i.e., she was not doing as well as the doc had thought.  (Please recall that medicine is an art and not a science.)

So, I am bracing myself for the bad news.  Don't get me wrong.  I don't want bad news.  But, the Dancing Queen's health hasn't been leaving me feeling that this appointment will be groovy.

First, we have her discharge instructions from Sunday, where the ICU attending doc made a specific point of telling me that the Dancing Queen MUST keep her appointment with the cardiologist on Friday.

Second, we have the fact that her resting heart rate is still sitting between 120 and 130, way too fast for her age.  That is a sign of heart failure.  While the Dancing Queen has pretty much been in heart failure her entire life, after her last open heart surgery in September, we were hoping her heart would be healing.  I don't want to even think about what that means.  Even if her heart has healed a little, it is still working too damn hard.

Third, the Dancing Queen is still dependent upon medications that are only supposed to be needed by people in heart failure.

Fourth, before the Dancing Queen's latest illness, it had been determined that she was only up one pound since last April.  It is almost a certainty that by Friday, she will have lost that pound (she is currently not eating for a second week in a row), meaning she will be the same size she was a year ago.  Doctors don't generally like that and pediatric cardiologists really don't like that (and I'm guessing the Dancing Queen's GI and endocrine docs won't like that either and we see them Friday as well).  With this kind of weight issue, the g-tube threat becomes a real possibility and I don't really think it would work.

The real question remains, how to stay calm and still hope for the best?  I want to believe that my daughter is on the path to better health, but I can't see it.

My biggest fear is that we will be back to where we were in December 2009.

Name Calling

TRex has taken to calling people names.  He loves the attention.  And no matter how often we tell the Dancing Queen to ignore him and explain to TRex that it is not nice to call names and show him how to get positive attention, he still does it.  His favorite a couple of weeks ago was calling everyone "baby".  That drives the Dancing Queen crazy.  She is most decidedly NOT a baby.  We were working on this with both kids, trying to stamp out the attention and stamp out the urge to get attention by angering your sibling.  It was a slow process, but we thought it was working.  Then, the Mad Scientist picked TRex up from school and witnessed him call his classmate "baby".  Said classmate also decidedly in NOT a baby and looked as if he was going to clobber TRex.  The Mad Scientist then forbade TRex from calling anyone baby.  Immediately, "baby" became a bad word to TRex.

So, every day last week, when I would pick TRex up from school, he would tell me all of the people who used the bad word "baby" during the day.  Later in the week, he also informed me that a classmate was using the bad word "poopy".  When I questioned why he thought the words "baby" and "poopy" were bad, I was informed because you can't use them.  I quickly realized the horrible path we were headed down.  Soon, every word would be "bad".  I had to explain that it is the intent behind the word that made it bad and not the words itself.  (Thank goodness, we were working on "baby" and "poopy" and not F*%K or something else!)  The lesson stuck for about an evening and now he is back to calling people names.  Ugh! 

I continue to explain it is not nice to call people names.  This week, everything is "poopy".  I ask TRex how he feels when he is called a name and try to get him to empathize.  I explain it is not good manners to call people names.  I try to show him how to get positive attention and when he wants positive attention, I am very generous in my compliments.  I always laugh at the knock knock jokes.  So far, the name calling is sticking.

Anybody have any useful advice?

As an aside, sorry for the overuse of quotation marks!

Long Term Gain v. Short Term Pain

I had several conversations with TRex this weekend regarding long term gain from short term pain.  It got me to thinking about our government.  I really think if our government thought more like a parent and less like a child, we would be better off.  Let me explain.

TRex is 4.  In October, he came to us requesting to play sports.  He didn't care what sport, he just wanted to start playing sports because his cousins played soccer, hockey, and baseball.  The difference of course is that the Car Guy loves sports and has always played them, so he got his boys involved in sports from a very young age.  The Mad Scientist could care less about sports and with as busy as we are with the Dancing Queen's many, many doctors appointments and therapy sessions, adding extracurricular activities for TRex was not a priority in our home.  Anyway, I digress.

TRex wanted to play sports, so we signed him up for swimming lessons and soccer.  Swimming lessons seemed obvious because TRex has always loved the water and we want him to continue to love it.  We want him to be safe.  Soccer was the only "sport" we could find lessons that fit our schedule during the winter.

Of course, TRex is 4, so when said lessons started, he didn't want to do it.  Swimming scared him . . . A LOT.  The teachers make him do scary things (another aside, TRex is pretty much scared of everything these days).  The swimming teachers have the audacity to make him try to jump into the pool.  They take him out of his comfort zone.  TRex doesn't like this, yet taking TRex out of his comfort zone is exactly what I want for him. I don't want him to be scared of life.  I want him to face his fears in a controlled setting, where I know he will overcome them and, hopefully, gain some self-assurance.  After all, being a parent is about making the tough decisions for our kids, making them endure short-term pain for the greater good in the long run.

This weekend, TRex was especially adamant in not wanting to attend swimming lessons.  It had been a really hard week for him with his family separated due to the Dancing Queen's hospitalization.  And in his mind, he never believes that the Dancing Queen will come home when she is hospitalized.  So, Saturday comes, Ma and Papa were going to bring TRex to swimming, then soccer.  TRex fought me about swimming.  They were going to make him get on the driving board and jump into the pool.  That was too scary.  He couldn't do it without Mommy in the pool.  So, all through the morning, I explained to him that I couldn't be in the pool with him and that he had to face his fear because it would be better in the long run.  I told him that sometimes we have to do things we don't like to do or are scary because they will help us be better people and help us grow up.  I also told him that if he got scared, all he had to do was remember that Mommy was always with him; remember that the kisses and hugs I gave him couldn't be washed off and were still there even in the pool.  It worked because he knows I am there for him and will not let him down.  He enjoyed swimming (and soccer, but that is not an issue because they don't make him jump into water well above TRex's head).

Now you are wondering what does this have to do with the government.  Easy.  Too often, our government officials make decisions based upon their fear of the short term pain.  They act like children and don't want to do things that will hurt today, ignorant of the damage such shortsightedness will have on the future.  Instead, our government should be acting like parents, looking at long term goals and how to reach them.  If we constantly give into our fears of jumping into the pool, we will never learn to swim.  Likewise, if we are constantly afraid of the short-term consequences of fixing government, then we will never have a solution.  Continuously cutting money to education or cutting funding of health care for everyone might save money today, but how is it going to help our future?  I don't see how we can expect to maintain our status in the world if our children are not properly educated and unhealthy.  Expecting people to pay for it all themselves is unrealistic and only adds to the damage being done.  Why do we live in a society if we don't want to work together?  I don't have the answers, but we need to figure something out quickly. And if the government thought more like a responsible parent, rather than a child, we would probably be better off. 

Addiction

I am an addict.  I freely admit it.  I need coffee.  No, really.  I NEED coffee.  I wake up each morning with a headache that can only be cured with caffeine.  Of course, black coffee is my caffeine of choice.  There is nothing better in this world than a fresh brewed cup of cup. It makes me so happy.  And gets rid of the headache.

I know, you are telling yourself that lots of people love coffee, so I may not be an addict.  My first clue that I am a true addict?  When I quit caffeine to get pregnant, it took about 3 weeks of headaches, blinding headaches for me to get off of coffee.  I was caffeine free for about a year and a half with my son (6 months to get pregnant, 9 months of holding the child in utero, and 3 months of breastfeeding), except 2 weeks at about the fourth month I was trying to conceive.  I knew wasn't pregnant, so I decided I could have one cup of good coffee.  The next day, I woke up with a headache.  It continued for 2 more weeks. Still not convinced that I am an addict?

After my daughter was born and I was done pumping milk for her, I decided to truly embrace my coffee since it was going to kick me in the head (that and I needed to stay awake).  I upped my caffeine consumption to new highs.  I ended up in the hospital with heart irregularities due to the increased caffeine consumption.  That scared me enough to cut back, but I could not cut out the coffee (as I've been scolded to do by many doctors).  If lovely fresh brewed coffee is unavailable, I will sink to drinking the coffee at work.  My addiction will make me covet the powered crap the hospitals provide.  In short, without coffee, I am at your whim.  You can have total control over me if you dangle a cup in front of my eyes.

Am I alone?

Things I Didn't Know About Medicine

Since I am not a part of the medical community, but I have a lot of experience dealing with them, I thought I'd share some of my insights today with a post about things I've learned about the medical community.


One thing that I didn't know before the Dancing Queen was born is that medicine is more of an art than a science.  Generally, if you get sick, you see a doctor, they give you a medicine and you get better after a couple of days or weeks.  Or, you have surgery, get it fixed, heal from that and you go on with your life.  At least that is what I thought before the Dancing Queen was born.  Everything with her is the edge of knowledge.  There are no answers, but lots of questions.  Right now, they are treating the Dancing Queen with an antibiotic she has never used before in hopes that we can get rid of the infection she has brewing on top of the virus that has got her locked in intensive care all week.  The doctors don't know if it will work and if it doesn't, they'll remove the tubes from ears and hope that works.  All guesses with no real answers.

The docs don't know why the Dancing Queen won't eat (even when healthy).  They don't know how to fix her main heart/lung defects now.  The doctors' solution is hope she grows, which they have been telling me  since I was 20 weeks pregnant with the Dancing Queen.  She hasn't grown much in that time, so I don't know how they expect her to grow.  Medicine is a guessing game, yet doctors act like the hold the answer to everything in their hands.

The last thing that I will share today about what I didn't know about medicine is that the medical community doesn't multi-task well.  By that, I mean medical staff look for one cause to a problem.  When they find that cause, they don't consider anything else.  I find this very odd because it has always been my experience that multiple things occur at once. I can have a splinter in my thumb and a broken leg.  Both could make me miserable.  Yet, once the doctors isolated the Dancing Queen's virus that was attacking her respiratory system, they wouldn't consider that anything else was attacking her ears, until days of my pushing.  We've had this problem before, especially after surgery.  Open heart surgery affects all of the systems of the body, not just the heart and lungs.  Yet, after all of the Dancing Queen's surgeries, when she has had GI problems, the docs won't listen to me when I ask them to get a GI consult.

This is something else I didn't know about the medical community.  They all specialize these days, but nobody talks to each other.  We are lucky that the Dancing Queen's primary specialists are all in the same office so they can talk with each other, but overall, that doesn't happen.  As an attorney, when I have an accounting issue in a case, I consult an accountant.  If the case involves power plants, I talk to power plant engineers.  If I have a medical issue, I talk to a doctor in that field.  Yet, in the medical world, the different specialties only talk to each other when pushed. 

Now none of you will have to spend time in the hospital to learn these lessons.  As an aside, I haven't posted in a couple of days due to the continued hospitalization of the Dancing Queen and my own illness.  It is hard to do the whole hospital/work/home thing healthy, but even harder sick.  I crashed for 10 straight hours last night and thought I would feel a little better this morning, but not much.  Luckily, my husband is freaking amazing because, after he spends some quality time with TRex, he is coming back to the hospital so I can sleep at home again.  It looks like the Dancing Queen will be released from the hospital tomorrow, so that helps.  It will allow the Mad Scientist naptime tomorrow.

One of the things I never knew before the Dancing Queen was born is that sitting at a hospital bedside is extraordinarily exhausting.  You wouldn't think it because you mostly just sit, but the worry alone is tiring.  To that, you add the frustration from trying to get a sick child to eat or drink and try keeping a toddler calm when medical staff comes in or worse, keeping them calm during procedures.  It takes everything in your being to keep a straight face and be reassuring as your child is poked and prodded for the upteenth time.  It is all tiring.  But, since we can't leave the room even to pee because the Dancing Queen will freak out, there is no such thing as regular drinks and meals.  When we do escape for food, it is fast food/hospital food.  Not good, nor fulfilling and generally leaves you more tired than if you hadn't eaten.  Powdered coffee in a styrofoam cup doesn't lead to the alertness that real coffee does either.  The Mad Scientist and I generally do 24 hour shifts, switching places in the evening so that the person who has likely been awake for 24 hours can go home and sleep, then work the next day and come back for their 24 hour shift after that.  It isn't great, but allows both of us to go to the hospital and see both kids each day.  More things I didn't know.

Reliving Monday

Contrary to what has appeared on this blog since I started it, my life is not all about worrying about my family and the future.  This blog was not started as a forum for my deep thoughts.  I actually intended it to be for my random thoughts on things I want to share.  Honestly, there are many times I feel like expounding on an article I read or something I heard and felt limited by Facebook.  I thought a blog would be the perfect forum for that.  Unbeknownst to me, my subconscious had a different agenda.  That being said, I hope to be less introspective in future posts, just not today.

From 5:00 last night until 5:00 tonight, I sat in the PICU with my sweet angel.  She had a good night (at least as far as hospital stays go), but she was grunting and miserable from 6:00 a.m. on and her heart and lungs were showing a change for the worse as well.  I hate this so much!  I want her to be healthy.  I want her to be happy.  For the most part, I get the latter.  The Dancing Queen is one of the happiest kids you will ever meet.  Don't get me wrong, she is almost to the horrific threes so she is gets angry and is demanding and she has always been strong-willed, but she is overall happy.  Her smile lights up a room and she her eyes are simply amazing.

The Dancing Queen's happiness is what makes all of this so hard.  This hospital stay, she has been angry and withdrawn.  When we first got here, her sparkling personality was dazzling, but since her crisis in the ER, smiles are hard to find.  She showed a good amount of fight last night, but the rest of the time was misery.  As she whimpers in her bed, my heart breaks.  It is my job to protect her and there is nothing that I can do.  She allowed me to hold her for a good 20 minutes, but she swatted my hand away when I try to comfort her more times than that.

Luckily, she is improving, but having the feeling I was going to lose her on Monday morning hasn't left me.  I don't expect it will.  I relive all of the moments where I felt she may leave me from time to time.  I can still feel the hopelessness of walking in on a room full of doctors and nurses screaming orders and working on my baby at 8 days old (one day after her first major heart surgery) and dying inside as the chaplain came to me to offer support.  I thought he was offering condolences.  I can still see the look in the Dancing Queen's eyes when she was in the same PICU she is in now, suffering from a similar virus, and her oxygen saturations dropped to the 30s.  She was 8 months old.  And three days before that, when I had spent the day with her in the ER.  We were released (because they thought I was an over-protective mom).  We were not even home an hour, when her entire body turned blue on me.  I raced to the hospital, crying the entire way, with the Mad Scientist on the phone freaking out because he was a 3 hour flight away.

Those moments are all burned in my mind's eye, along with many other close calls.  We've lived through many.  Yet, I'm still shaken up by Monday. I know I am not the only one rattled by all of this.  The Mad Scientist, Ma, and Papa have all told me they were extraordinarily afraid after seeing the Dancing Queen on Monday (and none of them saw her during her crisis).  That is saying a lot since all of us have lived this hell and even more so for Papa, who himself is a hospice nurse.  Life has a way of kicking you in the head at times, but I think it is someone else's turn as the punching bag.

Help

This is our third day in the hospital, so we are getting the obligatory offers of help from the hospital staff. I find it amusing now.  Not amusing in I am laughing at it.  I think it is great that help is offered to parents of sick children.  Most parents don't have to face this as frequently as we do, so services like this are great.  However, we've been here and done it over and over again.  I've yet to find one of these helpers (social workers, child life specialists, case managers, chaplains) who could actually help me.  In the beginning, I would listen to the entire spiel and then nicely decline the help.  As time went on, I accepted the help, only to be told over and over again that they were sorry, they had nothing to offer me that I wasn't already doing for myself.  So, I've gone back to declining the help.  Each new helper takes it differently.  That is what amuses me.

For instance, today, we had the chaplain visit.  I've met this chaplain on several occasions.  Usually, I listen to what chaplains offer and then nicely decline for them to pray with us.  If you read my confessions post, you'll know that praying is not something that I would appreciate doing.  On a previous stay, this particular chaplain did not like or believe that I really did not want her to pray with me over my sick baby, so I had to tell her I was an atheist.  At that point, she backed out of our room quickly.  On this visit, she started her spiel, then looked up and recognized me.  She laid down the card she brought and quickly left, making an excuse as door closed.  I find this amusing, not because the woman was uncomfortable, but because her decision to press me into praying many moons ago forced me to tell her why I was declining and now she is uncomfortable around me. If she had just listened to my "no, thank you" in the first place, she wouldn't be so uncomfortable around me. I don't know if she is uncomfortable because she tried to pressure me into praying or because I am a non-believer.  She shies away so quickly that I have never been able to address the issue and frankly, when I am in the intensive care unit with my baby, I don't feel like I should have to make her comfortable.  I find it amusing that just the sight of me can cause a grown woman to flee immediately (and I promise, I was cordial to her when I told her why I didn't want to pray.  I try not to rock the boat with people responsible for my children's safety and welfare, nor do I piss off the people who work with the caregivers.)
 
We had a visit from another helper today as well--the social worker.  I've never met this particular social worker and it was obvious she had no idea of our history.  When I started responding to her questions, I could see the wheels turning to offer me services that have been offered before and won't work for us for several reasons.  I tried to preempt her by telling her we've been offered the services many times, that it is not worth it for us (more money/work than it is worth), that I appreciate the offer.  She didn't believe me.  I find this amusing, especially after she asked if I worked and I explained that I am a lawyer.  My job is helping people navigate the system (okay, I mainly help businesses navigate).  If I tell you I have been offered the same services several times, I looked into it and decided it was not worth it for our family, I don't feel like we need help at this time, and I know how to find help if needed, wouldn't you take that as a sign that we're covered?  Not this time (probably because she didn't look at the Dancing Queen's history sheet I provide to the medical staff).  Normally, the social workers accept my answers and look over the sheet and tell me it looks like I've got everything covered.  Again, I know her job is to make sure we are not lost in the cracks and I'm sure she deals with parents who don't want help all of the time, yet they need it.  But, someone telling you they've accepted the help before and realized it wasn't all that helpful doesn't require the hard sell.

I'm not against help, but we are already taking advantage of the services that are useful to us. Now, if someone would offer services that included cleaning my house, fixing my dishwasher that has been busted for 3 weeks, cooking healthy meals for me while I'm in the hospital, I'd be all over that. Alas, I've yet to find such services offered by any hospital, government agency, or charity. Granted, my family has stepped up in that regard on many occasions and my mom is grocery shopping for me right now, so I guess I don't even need that help.  (I'm still looking for the dishwasher fairy to replace the one plastic ring that busted and we can't find at Home Depot.)

Every Heart Has a Story--Relationships

I am participating in a blogging event for Congenital Heart Defect Awareness Week.  The task was to write about how the Dancing Queen's CHDs have changed my relationships, then link the blog post to When Life Hands You a Broken Heart so that all of the heart families can share and learn.

I have been thinking about this post for weeks now.  I even suggested the idea to Stefenie.  When I suggested it, I was certain what I was going to write about how I lost many friends, felt lonelier than ever, but my husband and I have grown together more.  This is all true and I thought I knew the reason too.  I thought my relationships faltered because people couldn't deal with my new life; couldn't handle the thought of a baby going through such agony and being around me made it too real.  Perhaps some of that rationale is true, but it is so much more complicated than I originally thought.

Since the Dancing Queen was born, I do not have the relationships I once had.  I don't speak with friends on the phone as frequently and instead of regularly speaking with three or four good friends on the phone (they all live in different states), I now only regularly speak to one friend. From early on, I felt like my other friends were abandoning me because of these less frequent calls and eventually never hearing from them.  It hurt a lot.  I was more alone than I had ever been.  I was hurting and the people who had said they would be there for me in the middle of the night if necessary weren't there.  I started a carepage for my daughter so that people could know how she is doing.  I know exactly who looks at it or at least opens the page.  And I know who doesn't.  A couple of people who I thought were my very best friends never read the posts and never call.  That hurt me the most. Neither was there for me when I needed it most.  With one of the friends, she actually came to TRex's 2nd birthday party and lied to be about reading the posts to make it seem like she cared.  The lying hurt even more.  I felt like she was rejecting me, adding insult to injury.

However, in writing this post, I learned that she wasn't rejecting me and neither was my other friend.  Neither of them had changed.  I had.  Before the Dancing Queen, I would call them.  Before the Dancing Queen, I kept up the relationships.  They only called me if I had left a message.  Nothing changed on their ends.  I just didn't have the time nor energy to be the only one making the effort, so the relationships fizzled. Having a child with a CHD is all consuming.  There are lots of doctors' appointments, therapy sessions, lab tests, and lots of time in the hospital.  There are surgeries, catheterizations, x-rays, pharmacy visits.  All of those things take time.  I simply didn't have the time to maintain friendships that were not reciprocating.  I couldn't be the emotional support any more.

It is nice to know this now, but three years ago, when I was all alone, it didn't help.  I was alone.  Nobody could talk about it.  Nobody would talk about it.  As a woman, I wanted to talk about my feelings.  I didn't have that with anyone.  My husband was in deep denial at the time.  My family wouldn't talk about it.  It just wasn't a topic of conversation.  Over time, I have forced the issue more for my sanity, but I still get cut off when I want to discuss my feelings many times with friends and family.  That is the part of girlfriend relationships that I miss.  (A caveat here is that I found wonderful heart mom friends who provide a forum for me to release these feelings.  They understand and I feel that they care as I care for all of them.)

On a positive note though, my husband now allows me to get out my feelings, no matter how much it hurts him.  He has moved beyond his denial.  I feel closer to him for it.  He tells me how he is feeling, at least in a rudimentary fashion.  We share this experience fully with each other.  By fully, I mean, we share the doctors' appointments, the therapy sessions, sitting in the hospital room, crying at the down times, rejoicing in the small miracles.  The one thing I love about this sharing though is that we generally don't fall down at the same time.  That allows him to hold me up when I most need it and I can hold him up when he most needs it.  The Mad Scientist is my rock, my partner, my best friend, and I am eternally grateful that he wouldn't let me run away.

All of that being said, I tried to think of how else my relationship with the Mad Scientist has changed, but I can't really remember.  It seems that we have been on this roller coaster for an eternity.  But when I think really hard, I would say that we don't get to spend nearly enough time together any longer.  Between both of us working and all of the Dancing Queen's appointments and keeping TRex on the right track, the Mad Scientist and I basically fall asleep on the couch each night rather than playing games together like we used to.  We try to take dates when we are able.  We have had a couple of weekends away from the kids.  We constantly talk about that trip to an all-inclusive beach resort we hope to take.  But, just getting a good strong hug after rough days is what I really need right now and he always has it.  Well, that and talking.  We talk.  We talk a lot about what we are feeling, our fears, our hopes, our plans.  That makes us closer.

Normally, I would do this sort of post on the carepage that I maintain for the Dancing Queen.  Mainly started to keep family and friends informed about our progress when I was 8 months pregnant, the carepage continues to be about the Dancing Queen.  I started this blog because there were things I wanted to say that were not appropriate in journaling the Dancing Queen's ups and downs (I really want her to be able to read it and not feel bad about her health's affect on our family because I love my baby and all that she has brought, even the bad because it comes with such GOOD). Since this blogging event was about my relationships and how my life changed, I posted it here.  If you found us from the blogging event, you may know us already from carepages, but I am protecting the innocent on the open blog by not using real names and faces.  If you found us from the blogging event and want to follow the Dancing Queen's story, send me an email at MomOnALine (at) gmail (dot) com.  If you didn't find us from the blogging event, you should check it out at When Life Hands You a Broken Heart.

Roller Coaster Rides

When the Dancing Queen was diagnosed, I was warned by my OB that it would be a roller coaster.  She was right.  We've been on a roller coaster now for over 3 years and I'm ready to get off.  It never gets easier and I think it is getting harder.

I had to bring the Dancing Queen to the ER at 4:00 a.m. today in respiratory distress. Everything was going fairly smooth as far as ER visits go.  We were waiting to get admitted and she went into crisis.  I got her the help she needed, but on the inside, I was breaking into a million pieces.  I couldn't get the ER staff to understand or care (maybe it was both).  I was completely afraid I was going to lose her because they weren't there.  I have never been that afraid before and she has been much sicker.  Today though, the medical staff just didn't get it.  Incompetence was my fear.  I didn't let it paralyze me though and despite fighting against me, they did what I asked, while rolling their eyes.  It worked.  Yet, I didn't feel vindicated, just angry because we had to fight to get them to take care of her.  People don't know about congenital heart defects, even the medical community.  The ER staff assumed it was okay that the Dancing Queen had dark blue hands and feet and lips because she was born with tetralogy of fallot.  They didn't care that she was noticeably in distress.  Why???  Because they don't understand!!!!!

Today is Congenital Heart Defect Awareness Day!  CHDs affect one out of every hundred babies.  It is completely unacceptable when the medical community does not understand these defects, especially a peds ER.  More has to be done!

Off my soapbox now.  My baby needs me.

Drinking Games

Who knew that the drinking games I played in college would come in handy in the future?!?  I surely didn't.  But, today, I used a classic.  Originally, it was played to a TV show or movie.  We'd watch with a large group of people.  At the outset, rules would be established.  For instance, if we were watching South Park, each time someone on the show swore, we'd drink.  If we were watching a chick flick, each time they talked about love or there was kissing, we'd drink.  So, you get the picture.  The idea was to drink, a lot.


So, how did I use said drinking game in my adult life?  First, you need a little background.   Getting the Dancing Queen to eat and drink is one of the biggest challenges in our life!!!  She barely eats when she is healthy and when she is sick, there is not a chance.  The Dancing Queen had been on a nasogastric tube or ng-tube as an infant (feeding tube that goes through the nose into the belly).  When her gastroenterologist was going to place a gastric tube or g-tube (feeding tube surgically placed in her belly), we worked very hard to get her to take milk from a bottle.  We managed to get just enough in her to keep the docs happy (paltry amounts that normal babies would find totally unsatisfying--around 14 ounces a day for most of her first year).  To this day, we work very hard at eating.  The Dancing Queen has even gone through lots of feeding therapy to learn to drink and eat.  Today she still remains always on the verge on needing to get a g-tube placed to up her caloric intake.

Back to the drinking game.  So, the Dancing Queen did indeed get the flu and consequently is not eating or drinking, which is bad.  Dehydration is very hard on her overworked heart, so we've spent many days in the ER getting boluses of IV fluids when the Dancing Queen refuses to drink.  Since she is refusing today, I tried to explain to her that she had to drink to stay out of the hospital.  She was in general agreement with the plan.  She told me that she didn't want to go to the hospital and was dead set against an IV.  Unfortunately, intellectually knowing this is not the same as doing because she still refused to drink.  Her fever spiked again at lunch time and she refused to eat, insisting it was time to sleep.  She was signing "sleep" with such force that her hand was turning red.  Here is where the drinking game came in.  As I read her a nap time story, before I would turn the page, I made her drink.  Amazingly, it worked!  I only had to revert once to chanting "Drink!  Drink! Drink!"

I'm feeling very proud of myself for thinking of this.  If only there was a way to integrate other drinking games from college into adult life.  Hmmm . . .  I'm going to have to drink on this.

Bi-Polar?

Please tell me I am not alone.  I truly believe my pre-schoolers are bi-polar.  I got home from work.  They had just laid down.  I went to tuck them in.  They were the sweetest, most lovable kids.  I could tell they were keyed up, but still oh so sweet.  Came downstairs, logged onto FB, expected to goof off while the Mad Scientist finished dinner.  Instead, I sat listening to the monitor.  My kids were so freaking cute!  They were talking to each other, having fun.  The giggling was infectious and I was smiling from ear to ear.

The Mad Scientist and I decided to wait until 8:30 (an hour after bedtime) to let them talk and giggle with each other.  Around then, I went up to find out what they are doing.  They were pretending it was the Dancing Queen's birthday.  They were signing happy birthday, Ma and Papa were there, as were the Editor, Car Guy, Little Car Guy, and the Chef.  They were having the time of their lives.  Yet, I managed to convince them that we would play birthday party tomorrow, we'd make party hats and pretend cake.  We'd sing and we'd pretend the entire family was there.  After we pretended it was the Dancing Queen's birthday, we'd celebrate TRex's birthday.  I even convinced them that they could dream about birthday parties tonight to prepare.

Well, I thought I had them convinced.  They were quiet for a couple of minutes.  Then, over the monitor comes the giggles.  They were back.  They were still so stinkin cute.  We were loving it.  But, we knew the kids were on borrowed time.  Both are sick and haven't been to school for three days.  They needed to go to bed.  The Mad Scientist went back up and asked them to go to bed.  They giggled a little more and when it went from giggling to screaming, the line had been crossed.  The Mad Scientist went back up.

Here is where my sweet and cuddling children turned into pure eeevile.  TRex was adamant that he was not going to sleep.  He threw his puppy dog out the room, the one he has slept with every night since he was a wee baby.  When forcefully told he had to go to sleep, he screamed, he yelled, slammed doors.  The Dancing Queen was fine, then decided she was going to misbehave as well.  We had to take her pacifier (she only gets it in bed and she wasn't sleeping).  Then all hell broke loose.  Both were running around the room screaming and upset.  It was beyond obnoxious.  They were true devils.

Eventually, we got them back in bed, sleeping and quiet.  But, you tell me.  Am I alone?  Or are other people's pre-schoolers bi-polar?

Fears of the Future

I read a beautifully thought-provoking post by Law Momma about being the mother to a son yesterday morning.  I sobbed as I read the post because it was so real and true to me.  It raised feelings that I did not know were so close to the surface and those feelings have stuck with me over the past day.  I highly suggest you all read the post, especially if you are the mother to a son.  For purposes of this post, it is enough to know that Law Momma discusses sons growing up and marrying one day, leaving their mother's fold.

I am guessing that I had a very different reaction to the post than most moms.  As a heart mom, I have a special gift that is not given to the normal mom:  I know that my time with my children is limited.  Not only intellectually do I know this, but I know it with my entire being.  I ache with the thought at times. For that reason alone, I sobbed yesterday morning.  Beyond that, I had never considered my children leaving me by their own choice.

I have spent a lot of time particularly over the last year making sure my children know how much I love them.  I hug them constantly, to the point that all I have to say is "Do you know what I want?" and both kids will either say "a hug" or they come give me a hug.  Both of my children frequently tell me out of the blue that they love me.  So, reading the post yesterday morning was jarring because in my mind, this type of relationship would have no end.  Yes, there might be moments of "Bad Mommy" (which I am told at least 10 times a day), but overall, my children would always place me first and in my mind's eye they will always be pre-school age.

Of course, I know children grow up.  Boys become men.  Girls become women.  And they lead their own lives.  I don't talk with my mother nearly as often as I used to (but I do still talk with her a couple of times a week).  But, the thing is, at some point, I stopped envisioning my children growing up.  When TRex was born, I began writing letters to the man I knew he would be.  In the letters, I told him about us and what we were doing and how much we loved him because I knew he would never remember.  I dreamed of giving him these letters when he turned 21 or maybe on his wedding day.  I stopped writing them though when the Dancing Queen was diagnosed. I couldn't force myself to write a letter for my adult daughter who might not be there and because I couldn't write to her, I felt like I could not write to TRex any longer either.  From that moment on, both of my children only existed to me in the moment.

In reality though, my children are growing.  I know this--at least with my head.  I make plans for their future all of the time.  My practical side knows that I must make plans and keep moving forward.  I encourage them to dream big and tell them they can do anything.  We frequently discuss their futures and who they will be and what is expected.  Yet, over the last day, I realized that fear will not allow my heart to believe a future is possible.  I fear if I hope for the future and plan for real, my world will come crashing down.  But, I know that if the world does come crashing down, it is going to hurt like hell no matter what plans are made.  There is no way to hide from pain.  So, as of today, I am attempting to overcome my fear of the future and make plans--real plans.  Instead of saying the Dancing Queen is going to have a normal life, I'm going to give it to her.  I don't know how yet, but I'm determined.

Scatter Brain

These are the days being a working mom is hard.  My son is sick, very sick.  He has the flu, a flu bug strong enough to bust through the flu vaccine.  He does not get sick like this frequently and all of my mom fibers just want stay home with him and snuggle him, but I can't.  I am buried in work right now and trying to prove I still am who I think I am.  The Mad Scientist will stay with TRex and I will trudge to work and . . . I don't know.

There is no question that I will get work done, but my mind will be thinking of TRex and the Dancing Queen.  I admit that TRex's illness has me more worried about the Dancing Queen getting it than TRex having it.  He has a fully functioning immune system, great respiratory system, and healthy heart to fight this.  The Dancing Queen does not and I don't recall a single sickness TRex has suffered through that he has not given to his sister (save one stomach bug Christmas 2008).  Let's face it, I will be distracted by sick kids.  This doesn't help because my mind is distracted a lot more lately anyway.

I think my brain stopped fully functioning on December 14, 2009, the day we were told the doctors had nothing more they could do for the Dancing Queen.  She had a matter of years to live and there was nothing to be done.  Luckily, I don't listen very well and found a second doctor willing to look at her case, which eventually led to the Dancing Queen's third major heart surgery last September and she is improving.  We still have no guarantees, but nobody does.  However, since that December day, I am much easier to distract.  Even now, I have to work very hard to concentrate on anything for too long.  It takes me longer to complete tasks.  This was never me.  I could get it all done quickly.  I would plow through.  I don't like this new me, but I haven't found a fix yet.  I guess I'm still trying to figure this whole heart mom thing out.  It would be so much easier if kids came with an instruction manual!

Congenital Heart Defect Awareness Week

I am a heart mom and as much as this blog is not about my daughter, CHDs are a part of my life.  This week is congenital heart defect awareness week and I would be remiss if I didn't post about it.  Please watch this video for CHD Awareness Week and pass on the message.

Every 15 minutes in this country, a baby is born with a heart defect.  Every 2.5 hours, a baby under age 1 loses their battle with CHD.  Unfortunately, routine screening for heart defects is not yet done and many babies go home from the hospital undiagnosed.  Awareness is needed so more parents know what to look for.  To see the importance of awareness, read the blog When Life Hands You a Broken Heart.  Today, Stefenie highlights a story of a child who was not diagnosed until 15 and the devastating results her family is now facing.

If you would like to learn more, here are some great links that discuss the symptoms of CHD and provide more information.
*  Symptoms of CHD from the NIH
*  List of CHD Facts
*  More CHD facts from the American Heart Association

Confessions

I had started this post about confessions in my head earlier this week.  I figured if I was going to blog for myself, rather than just for the Dancing Queen, I should say some things that I hold back elsewhere.  I thought it would be liberating.  (I guess we will see!)  Fitting nicely with this post on confessions, I was awarded the Stylish Blogger Award from Mommy 2.0.  It is an honor to me that I have been noticed for my blogging (especially as a beginner).  Part of this award includes me divulging seven things about myself.  I already had the list started, so I decided I could come up with more.  With no further ado, here is my first list of confessions.

1.  Most of the time, I enjoy going to work.  I love having time to sit in an office by myself, reading and writing without children screeching at me.  I enjoy having adult conversations, not having to answer the same question over and over, and knowing that I can hold my head high as I walk down the hall (no need to constantly check for landmines, legos, or random game pieces laying on the floor).

2.  I regularly wake my children up at night while they are sleeping.  I don't do it purposefully, but I can't help but hug them before I go to bed at night.  I always think before I bend over that I should not do it because they'll wake up, but I do it anyway.  Luckily, they don't wake up too much--just enough to grump at me and roll over.

3.  I am an atheist.  I tend to keep this to myself because it is usually not well taken and tends to make people uncomfortable around me or they feel the need to save me. I have in fact been told that the Dancing Queen was born with a broken heart because I do not believe.  A family member thought God was teaching me to come to him by making me watch my innocent baby suffer and come close to death on several occasions. The surprise (to me included) is that nothing has pushed me stronger into my non-belief.  This is not something that I decided lightly or suddenly, so please don't try to save me.  I'm perfectly happy as I am. 

4.  I dislike cheesecake.  I know to many this is a catastrophe, but you should know that I have seen your shocked looks of horror on many prior occasions, so they no longer phase me.

5.  I have classic novels on my Kindle and have bought hard cover brainy books (they sit on my bookshelves or at least did before I ran out of space), but they remain unread.  I don't keep them for show, but I don't read them either.  I always intend to read them, but it just doesn't happen. Instead, I grab a girly book.  I LOVE chick lit!  Give me a light novel about a woman doing her thing, falling in love, falling out of love, what have you, and I am happy.

6.  I don't watch football.  I don't have the Superbowl on right now, which is how I am able to blog.  Frankly, I am okay with it.  I do know more about the game than my husband.  I would be surprised if the Mad Scientist knew how many points a touch down is worth.    (I asked. He didn't.)

7.  I don't cook.  It's not that I can't cook or that I don't like to cook.  It's just that I am rarely home at dinner time and when I do finally get home at night, I'm too exhausted.  Plus, I taught my husband to cook and he is far better at it than I am.  I let him take the lead and love it.  A goal the Mad Scientist and I share is to have the time and money for him to take a couple of culinary classes so he can really learn techniques.   We always joke that we are Wannabe Foodies, but we want to be Foodies.

At this point of the Stylish Blogger Award, I'm supposed to nominate others, but this is the hard part.  I read so many blogs.  I would love to nominate Mommy 2.0, who nominated me.  I find her posts remind me of me and it is nice to not feel alone.  However, I would not expect her to repeat the award process.  I also nominate Donkeys to College because that is just a funny read.  Finally, I will nominate Stefenie at When Life Hands You a Broken Heart.  Stef does so much for congenital heart awareness and is a great support for all of us heart moms.  I can't wait to read the interviews with heart moms and dads this week!

A final thank you to Mommy 2.0 for helping me further with my confessions and giving me this award.

Double Espresso Kinda Day

Today is going to be one of those mid-day MUST. HAVE. DOUBLE. ESPRESSO. kinda days.  I know it already and it is only 7:30 a.m.  Let's be clear, exhaustion is my normal state.  Coffee is my best friend. But, today, coffee will be more of a crutch--an evil, lovely crutch.

I stayed up until 1:00 a.m. "burning" to DVD a video I had created for Congenital Heart Defect Awareness Week (February 7 to 14).  1:00 a.m.!  UGH!  I stayed at work until 8:00 pm, then had to make several stops on the way home.  While I was driving home, my husband made the first attempts at burning the DVD.  Failure!  I bought new DVDs thinking that was the issue.  NOPE!  So, I uploaded the video in hopes that I could download it onto my laptop and a friend could download it and burn it to DVD.  Did you know you can't download videos that are on facebook?!?  I learned that around 11:00/11:30 p.m.!  The video as an MP4 was too big to email, so I cleaned off a thumb-drive, downloaded it and around midnight learned that my laptop has a DVD burner.  Who knew!  BUT, that burner wouldn't accept MP4 format, so I had to re-render the video in an avi file, making it almost 3 GB, which entailed downloading the video to the Mad Scientist's phone, transferring it to the laptop (after a good 15 minutes fighting with the home network not allowing the computers in the same room to talk to each other).  Finally, at 1:07 a.m., the DVD was burned!

Why would I waste my time regaling that oh so boring story?  Because, most days, that is my life.  A simple task takes H.O.U.R.S. and my kids don't even have to be involved.  Technology is out to get me as well.  Hence my addiction to coffee--plain, fresh ground, fabulous coffee.  I am drinking some right now.  Yum!  I am working a charity event tonight.  I'm so looking forward to it.  After all, it is the reason the DVD was needed in the first place.  But, in order to shine like the new penny I pretend to be, I will require a double shot of espresso, straight up, by 2:00.

Cast of Characters

Meet my family, otherwise known as my cast of characters.  First, there is my husband, the love of my life, the man who keeps me sane, is my rock, and makes me happy.  We will call him the Mad Scientist.  We met in 2003, fell in love immediately and haven't looked back since.

In 2006, we welcomed our first born, TRex.  He is the most lovable boy, constantly giving us hugs and kisses.  He loves books, he asks lots of questions, and creatures are his thing.  It started as a fascination of all things animal as a baby.  One of his first words was "flamingo".  Then he discovered dinosaurs.  He loves them, but feels he has learned all there is (because he pretty much has learned all there is in the age-appropriate books), so he moved onto sharks and other sea creatures.  He has a vivid imagination and loves movies.  He is not happy until he can recite an entire movie from start to finish.  If only we could get him to channel those energies to learning to write or cleaning up his toys.

In 2008, our daughter, the Dancing Queen, was born.  She is a handful.  She is stubborn and knows what she wants and that is what she going to do.  The only thing in her way is her body.  As she gets older, she is teaching herself ways to get around the limitations inherent in her physical being.  Her favorite things are music, dancing, hugs, and characters.  She loves characters!  Her favorites right now are Mickey and Minnie and the entire Disney gang.  She can sit still for at least 15 minutes playing with her characters and that is a lot for a little girl who is constantly on the go.  She has to be moving at all times.  I've seen her laying in a hospital bed, not able to get up, but still dancing.  (Yes, she has proven that you can dance laying down.)  Alas, the Dancing Queen was born with a micro-deletion of chromosome 22q11.2, otherwise known as DiGeorge's Syndrome.  That itty bitty missing piece of genetic code has caused serious, life-threatening manifestations in the Dancing Queen's anatomy.  She was born with severe congenital heart defects:  tetralogy of fallot with pulmonary atresia, an abnormal tricuspid valve, and pulmonary vascular disease (hypoplastic pulmonary arteries) amongst other defects.  She has a week immune system, lots of GI problems, and other issues.  The Dancing Queen doesn't let any of it stop her.  She is about to be 3, yet is the size of a 13 month old, so when she needs to get to something on a couch or a bed, she grabs her stool and climbs up.  Strangers are regularly amazed by the Dancing Queen because they think she is a prodigy baby due to her petite size.  She is bold and tries most things at least once, even if it is difficult.  I think having spent about 6 months of her life in the hospital has taught her to accept things and go with the flow.  Our lives have pretty much revolved around the Dancing Queen's health since she was diagnosed in utero.  She definitely adds complication, but it is so worth it.  She has also taught us to enjoy every moment and savor every hug.  We've learned that there are no guarantees in this world.  You have to make the most of what you have got.  The Dancing Queen is our daily reminder that life is the most precious gift.

Rounding out the cast of characters are Ma and Papa, my parents.  Ma is the craziest woman you will ever meet (not crazy in the padded room kinda way, but crazy in a Ma kinda way, can't explain it).  Seriously, she is proud of the fact that she has been cutoff at a bar when she wasn't drinking.  My dad counterbalances her craziness.  They regularly help us with the craziness that is our life.  Without them, I would have fallen off of the tightrope long ago.  They keep us sane.  It never ceases to amaze me that as a mom myself, I still long for my mommy some days.  And she is there.

Then you have the out-of-staters, my sister, the Editor, and her husband, Car Guy.  They have the best boys, Little Car Guy and the Chef.  They live too far away to be around often, but they come when they can and make our lives so much better.  To tell you how much my sister rocks, she has taken one week of her vacation time each of the last three years to help us while the Dancing Queen was having surgery.  Instead of vacationing or catching up on sleep, she has chosen to watch TRex and make sure he was taken care of, while being a rock for me and the Mad Scientist, during the hardest points in our life.  She is amazing.  She drives through the night to help out.  She comes for weekends just to have fun.  And, she makes the most delicious and fabulous looking cakes.

Time

I don't have the time to write a blog.  I don't.  So, please don't expect me to be funny.  I'm not funny in regular life, so I won't be funny here even if I had a ton of extra time.  This is my outlet, my chance to scream for myself.  I've been desperately searching for some other blog to follow that fits all of my things; some role model with a forum in which I can join her and shout out my frustrations in unison.  Unfortunately, I have yet to find the full time litigation attorney, who is also a mom to two kids, with one having special needs.  I follow mom blogs.  I follow mom to special needs kids blogs.  I follow law blogs.  I follow mom law blogs.  Not yet, have I found one who does it all.  Apparently, all of the moms who do it all don't have time to blog.   So, being the glutton for punishment that I am, I started my own blog.  Now I can scream and perhaps provide a forum for other moms learning to walk the tightrope to share in their frustrations, triumphs, and tedium.


Not that my life is tedious, but it's just not what I had pictured when I went off to law school.   The first thing they fail to tell you before you go to law school is that you will not have a fabulous lifestyle as an attorney.  Lawyers don't get to act like Ally McBeal.  They don't get to have fun in the party kind of way all day and there is a ton of work that goes into any brief, motion, or trial.  No lawsuit is filed, argued, and completed in a day.  It takes years.  And those years are filled with reading documents (most of which are irrelevant), reading cases and statutes, taking depositions that can last days and days, resulting in no new information, then putting all of that into a page limited brief, all the while trying to keep clients happy when they think you are just having fun like Ally McBeal.

Don't get me wrong.  I love reading documents, finding the smoking gun.  I really love reading cases and finding the argument that will work.  That is why I am a lawyer.  But, the hours are not fun, especially when kids come along.  In the last two weeks, last night was the first weeknight that I made it home before my kids' bedtime.  The only reason I made it last night was because I left early due to the alleged snowmaggedon that was about to pour feet of snow upon our fair city.  The reason I arrive home so late is:  (1) I take care of the kids in the mornings, getting them off to preschool (my favorite part of the day!); and (2) I can't work from home.  I am lousy it!  So, I stay at work until the work is done or my brain is mush.  Perhaps if I had an office, I could be more productive at home and work after the kids went to bed, but I doubt it.

So, this blog is a place for me write about how I cope with being a mom to a special needs child and a precocious 4 year old, a wife, a lawyer, a daughter, a granddaughter, a sister, a friend, a volunteer, and whatever else comes my way.  It is also a place for me to scream when it is too much because often it is.  Finally, it is a place where I hope to find other moms just like me or anyone else who wants to come along for the ride.