Saturday, November 2, 2013


Dear family and friends that are wondering what's going on since the last bomb I dropped about Cecilia's MRI results and outcome prediction consult:

So, to be honest,  I'm having some difficulty coping with what I know now.  I'm so thankful to know it all because like I said, "Since Cecilia's diagnosis we have always had the mindset that we want to be one step ahead of HLHS and tackle it proactively. For the first time in her life, we feel like we now are. And we have them to thank for it.".   I want  you to know how happy I am to know these things, but at the same time I feel so complicated inside.  I'm not even sure I understand what I'm feeling and going through.  I'm not really depressed, at least not any kind of depressed I have ever experienced.  I just feel lost.  I feel like our lives are suspended in time until Cecilia's Doctors get the results from Mayo Clinic.  I hold my breath when I check the mail, because I know when I receive my copies there is a good chance that her Doctors are receiving them too.  I do continue on with our daily routines as if nothings changed except in my mind I know SO MUCH has changed.  gulp. It's all I want to talk about except at the same time I don't want to talk about it at all.  Not until I have the results in front of me again and I can process it over and over until I really understand what it is I'm even talking about.  Because that's just the thing, I feel like I am still processing it all, like it has not really sunk in yet.  However, I'm hoping this will make me feel better, by trying to explain what I'm going through.

Everything is at a stand still.  We are standing still.  Except so much is moving around me (my thoughts and my questions).  Like standing in the sand while the waves move you, or at least give the illusion that you are moving...drifting. I don't know where we are "moving".  All I know is that Cecilia needs an unplanned surgery to fix a bunch of problems I sort of knew about, except I was told they were not problems anymore, and to trust that they would not concern her future.  In a lot of ways I also feel validated in my instincts, which is a good thing sort of.  I'd rather be wrong if it meant my baby was doing well, but it gives me the confidence to voice my concerns more aggressively instead of passively.  And then I constantly wonder so many things about the future, after Cecilia's doctors do receive the reports and after I have spoken to them about it all.  Will I need more surgical opinions?  Should I request them anyway? And who/ what centers am I interested in if I'm not confident in the opinion/plan we receive back?  What are we going to do if that happens? That's mostly all I think about right now, because that's the first crossroad to get to. I'm hoping we keep walking forward, but there is a chance I won't feel safe with whatever plan they want for my baby.  Changing our path is something I can do because we've done it before.  I know it could happen, and just in case I want to have a back up plan---at the least an idea of one.  It would be so easy if they gave us the same feedback Mayo did and that would stop all of my thinking and wondering.  The next crossroads would be a cath.  Where should she have her cath done?  Should it be where she is to have surgery, so that the interventions in the cath fit with her surgeons plans?  All of these questions I go over everyday...but I'm standing still...drifting from question to question.  

One thing I didn't say on Facebook is that he did say her heart function appearing good could be deceptive based off of how severe her Tricuspid Valve is leaking.  He showed us a movie of her heart squeezing, and showed us all of the blood swishing around backwards, and I think what he was explaining was that the leaking valve somehow makes her heart squeeze easier.  I've been waiting for the report in the mail, and hesitating to bring that up because I cant remember how he worded it.  I try really hard to remember the way he explained things, because he did a wonderful job at it.  Way better then me.  There is so many other things that tell us Cecilia's heart isn't doing well and it doesn't make sense to me.  Some of it does, but how it all comes together I feel lost.   Her heart is significantly more enlarged than it should be on your average single ventricle.  Her BNP is in the 700's, which is one of the strongest indicators to us that her heart is not doing well.  He could also tell by feeling her liver, that her heart isn't what we'd like it to be.  I think that was one of his strongest points to us, in explaining why he recommends this surgery as a 4th stage in reconstruction be done before the Fontan, and give her time to recover, and her other organs to benefit from the repairs.  Because when you switch to full Fontan circulation, your other organs can take a hit, specifically the liver.  I do feel like what he was indicating is that what's going on with her now--that this can be  reversible.  And that's why I feel so happy we know now before the only option is a transplant.  But it's so conflicting inside.  I don't want to feel happy to know my baby needs another huge surgery.  I haven't truly even accepted the need for the 3rd open heart , and now there's more...  And it's not that I'm even happy about it at all.  I'm rather upset about that itself, and maybe even angry.  I guess that's why I feel lost.  So many emotions that contradict each other....  He recommends that her Lasix be increased to at least twice daily again.  He also said she would benefit from Aldactone and Digoxin, both of which she used to be on in the past.   She's already on maxed dosage for her heart function medication (Enalapril)...  Knowing her doctor wanted to take her off of it, I'm so glad he hasn't gotten around to it yet. 

I don't think much about the discovery of Sophia's heart defect just yet.  He said no rush in getting her to a Cardiologist because her valve is working like a normal one, and we would only need to check on it once a year.  He drew us a picture of her Bicuspid Aortic Valve: 

I guess like with HLHS, there are different variations of BAV.  The one that Sophia has is a RN fusion. I have not researched her defect since she was diagnosed, but I have looked it up out of curiosity in the past, so I am minimally familiar with BAV.   I know there are many people living normal lives that have no clue they were born with it, and never even need surgery.  I feel very hopeful that will be the same outcome my Sophia will have.  I did ask the Cardiologist if she won the CHD lottery-- what I meant was if he were to have a heart defect, would this one be the one he would hope he got stuck with?  His answer was "NO, it isn't " because of the potential problems.  And I wont say which defect he told me he would consider the lottery because of the risk to offending someone who may disagree.  "The worst defect is the one your child has"

Cecilia at our hotel room in Minnesota
 one of the Hospital's waiting area
about to walk across the street to the Hospital. I think she's officially outgrown this infant carseat/stroller :)

As soon as I hear about what her Surgeon wants to do with her mod-severe leaking Tricuspid Valve, narrowing LPA that is hypoplastic (he also said he did not think it has actually grown since she was born) and her Aorta (which he suspected is not growing with the rest of her heart like the LPA--but I forgot to mention that part earlier), I will definitely let you know.  I gave the Surgeon a heads up and he is on the look out for the discs.  I hope to hear from her home Cardiologist as well and I will also keep you updated on that. 
♥ Please send us some good vibes ♥