March/April Appointment

We had our appointment at Children's today.  All four of us trekked down to Broomfield with the hope that we would get a successful echo with Daddy, Mommy, or Izzy present.  It worked!  Daddy was the successful partner in crime during the echo.  We not only got a great echo, we got an EKG, pulse ox and weight.  Izzy and I have been playing doctor with Mia at home as well, so I think it all helped.  Couldn't have gone better!  Since we did get a good echo today, our cardiologist was able to really see what's going on with Mia.  Her function looked great, which is always fantastic news to hear.  They were able to see that she is forming a lot of collaterals.  Collaterals are basically little tiny arteries that your body creates on it's own to get blood flow from one area to another.  Mia's pulmonary arteries are narrow (both of them), so her body is creating these collaterals to try and get more blood flow to the lungs.  What it actually does is create a path that leads to nowhere.  So it takes that extra blood away from the area that it actually needs to go.  Not good.  During the cathiterization, those collaterals will be coiled off, or plugged up.

Our cardiologist told us today that based on what she was able to see by echo, she is thinking that Mia's surgery will be this summer.  That will still be decided for sure after the cath.  During the cath the doctor & surgeon will make the decision as to whether or not we should leave the pulmonary arteries alone and patch them during surgery, balloon them to enlarge them temporarily, or put in a stent.  The problem is that the left artery, in particular, is narrow along a large portion.  A balloon wouldn't help the entire area, only a small portion.  The stent would help until they can be patched, but the surgeon would prefer there not be a stent for surgery.  Until they're in there for the cath, that decision can't be made.  Because of the amount of collaterals that Mia has, our doctor is going to try to push up her cath.  It's currently scheduled for May 15th, but she'd like to have it in April.  It all depends on scheduling.

Today's appointment was a relief.  Because we haven't gotten a good echo for months, there's been a lot of guessing and speculation.  Today we got answers.  At least for the time being.  I think it put all our minds at ease.  We have a better picture (a quite literal picture) of what's going on in our little girl's body.  After the appointment we explored Pearl Street in Boulder and took advantage of the gorgeous weather.  Great day with great news!

"The only sure thing about luck is that it will change."

We have a few digital picture frames in our home.  One of them actually plays on our TV when we're not watching it.  I've seen all the pictures on it a hundred times, but as I walked by tonight, I saw this picture of Mia.

That is a picture taken probably within an hour after she got out of her first open heart surgery, when she was 3 days old.  As this picture was up on the screen, I thought about Mia's upcoming surgery.  We still don't know when specifically it will be, but it will happen.  No matter when, it will happen.  We have a doctor's appointment at Children's this Friday, hopefully the final appointment before her cath in May.

All of these thoughts were going through my head in the few seconds that this picture was on the screen.  My initial thought was, there's my baby girl, I love her so much.  Sometimes I honestly look at this picture and I don't even notice the massive breathing tube down her nose, or the wide bandage covering her beautiful chest scar.  I just see my little girl.  When my eyes do notice the medical devices keeping her alive on that day, I think ahead to seeing her like that again, as a toddler.  Then I usually have thoughts of fear, but I didn't today.  I think that had a lot to do with two of my very good friends.

I looked at this picture today and I thought about how truly lucky I am to have this little girl in my life.  Sometimes I tend to think too much about how unfair it is that Mia has half a heart or how drastically our lives have changed since the day we got her diagnosis and I forget to remind myself that no matter those things, I have a beautiful daughter.  As I told one of my friends today, we can't concentrate so much on what we don't have, we have to remind ourselves of what we do!  Which then led me to think about another conversation that I had recently about miracles.  Mia is my miracle.  So is Izzy for that matter.  Just stop and think about what it actually takes to make a child, and you'll realize that every single living, breathing child is a miracle.  In addition to that, it's a miracle in my eyes that Mia has overcome what she has.  It's a miracle the medical advances are what they are today.  Every day I spend with both of my daughters is a miracle and I'm so lucky to have them in my life. Thank you Nicole & Cristin for helping me to remember that!

Happy St. Patrick's Day!

We've had a fun time dressing in green the last few days and talking about how you pinch people if they don't have green on.  Holidays are so much fun right now with the ages of our girls.  Izzy eats up all the stories and traditions that go along with each.  Yesterday we went to the St. Patrick's Day parade in Fort Collins.  It's the second year we've gone and it's by far one of the best parades that we've been to.  This year the only downfall was the cold weather.  We didn't come very prepared and all of us were a bit frigid by the end!

 Waiting for the parade to start.

Mia stole our chair at one point. 

We didn't sit down much during the parade at all though!

The Call

Well today we got "the call."  Mia's cath is now scheduled for May 15th.  It will be at 7:30 am, first procedure of the day.  It all became real after I hung up the phone with the scheduler at the hospital and I lost it.  For the past week or so I've been walking around the house angry and on edge (sorry Art).  I've been anticipating that call, and then it came.  So much is banking on this cath (a procedure where they insert a catheter through Mia's groin and thread it up through her body into her heart to see her heart from the inside).  It will tell us everything we need to know about how she's currently doing and it will predict her future as to when her Fontan will be.  Pardon my french, but I'm scared shitless.  That is the only emotion that I'm feeling right now...

Mending a Broken Wing

This morning Izzy and Mia were watching the Tinkerbell movie called the Secret of the Wings.  It's about how Tinkerbell finds her long lost sister, but at first they can't be together because they live in different seasons.  Not to spoil the ending, but Tinkerbell breaks her wing and the two fairy's (Tinkerbell and her sister Periwinkle) matching, sparkling, magical wings mend the break.  As we were watching the part where Tinkerbell's wing is fixed through the love and magic they share as sisters, I seriously started to tear up.  It made me think if Mia's heart and how I so desperately wish there was a magic "fix" for it.  Before the fairies realize that the wing can be fixed by this magical sisterly bond, they say several times how a broken wing cannot be fixed.  Mia's heart can be mended, but it will never be fixed.  Although Izzy and Mia's sisterly love cannot mend Mia's heart, it is a love that is so magical.  Never thought that I would have that deep of a thought about a Disney movie!

Strength

A fellow heart mom posted this picture today on Facebook.

I absolutely love it.  People have asked me from time to time how I can be so strong when dealing with the things that we've dealt with for Mia.  The truth is, I don't realize that I'm being strong and I really don't have another choice.  I'm just doing what needs to be done.  I'm her mom.  I've also had people tell me that I'm an inspiration because of my strength and they don't know how I do it.  Well again, I do it because I'm her mom.  I would do the same for Izzy because I'm her mom.  I would do the same for Art because I'm his wife.  I would do the same for my parents because I'm their daughter.  I would do the same for my brothers because I'm their sister.  We give everything we have for the people we love the most.  I'm not doing anything special, I'm just living my life.  

After Mia's appointment the other day, I was feeling very down and lost.  My confusion turned into anger.  It's at those moments that I'm not strong, or at least I don't feel it.  I cry behind closed doors and I whine to Art (probably more often than I should).  While, on the outside, it may appear as though I'm strong every minute of every day, I'm not.  I definitely have my moments of weakness.  Friday was one of them.  Today is not a day of weakness, especially after I saw this picture.  Today I will show you all strength because I'm doing what I believe I do best, I'm being a mom, a heart mom.  

March Check-Up

Mia's appointment today was uneventful, almost too uneventful.  She wouldn't stay still for an echo, so we didn't get any good pictures.  All our cardiologist saw was that her function looked good.  So then the question was brought up as to whether we need to do a sedated echo before doing a cath in May.  Ugh.  All I can say is ugh.  It sounds pretty definite that Mia will have a cath done in May and that will essentially tell us all the information that we need to know.  They will decide at that time whether or not Mia's left pulmonary artery (which is quite narrow) will need intervention or if it can wait until her surgery to be patched.  Which then brings me to the next thing that I talked to our doctor about at length.  Mia's Fontan.  We thought it was pretty set for it to be in August/September of this year.  Now we don't know.  It will all be determined by the cath that's done in May, or the potential cath in May.  That didn't even seem certain after today's discussion.  I left today feeling very frustrated, lost and defeated.  It's so incredibly hard for me to not have a cut and dry answer with this.  Mentally I want to prepare myself for the fact that my daughter's chest is going to be cut open, her ribs cracked and her heart operated on, yet again.  But it's very hard to even begin preparing when we don't really know when that is going to be happening.  It could be happening in 5-6 months like we thought the plan was, or it may not be happening for over a year.  The surgery will not take place between November and March/April due to it being the height of flu season.  We knew there was a ton of uncertainty involved with Mia's care, but sometimes it is just too much.