Penetrating the Armor

I haven’t had much to say as of late although I still follow all my favorite blogs as well as a whole new batch focused on kids with Congenital Heart Defects.   N0w, though, I find myself starting to bubble over so I thought I’d head back to the tried and true outlet of writing about it.

We’re 7.5 weeks away from Wal.nug’s scheduled arrival (and yes, at this point, that half makes a difference).  Physically I really can’t complain.  I have the typical discomforts with respect to sleeping, heartburn, back pain, etc., but nothing that’s unmanageable.  I started weekly non-stress tests at 29 weeks, so I get a weekly reassurance that Wal.nug’s doing just fine in there, which is nice with everything else being so uncertain.  It’s that uncertainty about what comes after the little one is born that is starting to take its toll.

LG has struggled and worried essentially since we got the diagnosis*.  He worries that our baby won’t make it through surgery or that the condition will end up being more complicated than what we’ve been told or that the child will have on-going health issues that will lead to a compromise in the quality of life.  He’s always wanted a boy, but now he’s saying he wants a girl because he thinks it would be too hard for a boy to be restricted from playing contact sports like football or hockey.  (That’s both heart-breaking to me in that it’s clear he’s really worried about the quality of our child’s life but also somehow funny since between the two of us and our epically non-athletic natures, this kid’s lucky to be able to walk without bumping into walls on regular basis much less play something like hockey or football.)

I’ve been the one with the stiff upper lip until the last week or so.

Through a wonderful organization we found on-line, I was matched with a mom whose daughter was diagnosed with the same conditions our child has at her 20-week ultrasound (just like us).  I’ve exchanged a few e-mails with this mother and she’s been incredibly generous with her time and story for which I’m hugely grateful.  Her story did trigger a great deal of emotion for me, however.  The most important thing is that her daughter who is now 3 is doing really well, which is fabulous, but her diagnosis ended up being more complicated than originally believed and she has had a really tough go of it and faces further invasive procedures to ensure her heart continues to function.  In many ways, reading her story was like a direct arrow to the protective shield I’ve built around myself.  Since the day we got the diagnosis, I’ve hung on to the fact that it was serious but very fixable – usually with a single operation and then the child goes on to live a normal life.  As I learn more and more, I’m finding that’s not always the case and that kids do have on-going issues and even require multiple surgical interventions.  (Now, that may be a bit of sampling error as we say in my business because it could be those who blog about and therefore whose stories are more available are those who have had a more involved course, but still – it’s getting harder to hold onto the “one surgery and done” mantra that’s been my talisman.)

Now that my shield has been penetrated, I find my worries really top of mind and constant tears just under the surface**.  It’s becoming harder for me to be the “strong one” yet expressing any of my fear, worries, or doubts makes things even tougher for LG.  We’re just ready for the next 7 weeks or so to go by so we can move on to at least having a better idea of what we’re dealing with and get out of the holding pattern we feel like we’ve been in for nearly a year – first when we were in the throes of infertility and now through a difficult pregnancy.  In the days to come, I’ll write about how I made a fool of myself at the newborn care class we took through our hospital and the family drama that’s ratcheting up around Wal.nug’s imminent debut.

* I think it’s finally safe to be more specific about the diagnosis.  Wal.nug has a condition called Transposition of the Great Arteries or TGA (also called Transposition of the Great Vessels) along with 2 significant Ventricular Septal Defects (VSD’s).  Essentially TGA means that the positions of the pulmonary artery and the aorta are switched meaning that rather than oxygen rich blood circulating from the lungs to the heart to the body, the oxygen rich blood in a closed circuit between the lungs and heart and the body never receives the oxygenated blood.  This condition is usually fatal within the first year unless treated typically via open heart surgery.  With Walnug, the surgeons will attempt to fix the VSD’s during the surgery as well which will likely take place when he or she is 5 to 6 days old.

** Could also be a function of raging pregnancy hormones…

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8 Responses

  1. So good to hear from you. You are in such an unbelievable position–suspended, waiting. Hoping that you are able to take care of yourself and/or let others take care of you. Hugs.

  2. Wishing you a continued healthy pregnancy, and the one-and-done surgery for your baby. I know the universe doesn’t really pay attention to who deserves what, but after all you went through to make this child, you and LG and Walnug definitely deserve the best outcome possible.

  3. oh.. thanks for writing.. i’m glad you checked in.. i always think about you and wonder how you are doing..

    i know exactly what you mean by the sampling error. i convinced myself of the same thing when we were going through the IVF treatments – all these people take 4 and 5 times for it to work.. well, the ones that have a tougher go of it are the ones that write about it. i hope that you’ll continue to write.. but i really really hope that the surgery fixes his sweet heart quickly.. and that he goes on to a normal life quickly.

    you seem like you are doing okay… i pray for continued strength for you and your husband.

  4. It’s tough, I can imagine. I’m thankful you don’t have to go it alone, though.

    Sending you lots of love!
    *HUGS*

  5. So good to hear from you Callie, I think of you often. Sending you loads of love and strength.

  6. just wanted you to know I’m thinking about you.. i check back frequently to see if you’ve posted.. it’s perfectly okay to be silent – i know you have a lot going on. you are in my thoughts and prayers..

  7. Hi Just wanted to say I wish you the best in the weeks to come. I am also a heart momma to a baby with TGA, VSD and PS. She will be having her 2nd surgery on Tuesday. I know the mixed feelings about boy or girl with a condition like this and agree about the sports etc. I do wonder if my daughter will be able to have children though, so that is a big worry for a girl. But wether they are a boy or girl it will affect them but they can still lead a full happy life, keeping in mind certain limitations. Best wishes and heart hugs!

    Michelle

  8. Callie, just a quick note to say good luck for L & D which should be right about now, I hope everything goes well and will be thinking of you.

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