Thursday, August 26, 2010

How our CMV story begins

Gili is almost ten months old and I have just begun to find websites with information about real people with congenital CMV.  (Like  I wonder if these are common outcomes of symptomatic CMV or if I'm only finding the "interesting" (dramatic) stories.  PLEASE G-d let my baby be uninteresting!  Until yesterday I only found a lot of the same information with statistics, how to prevent it, but not much information about what it’s really like to have a child born with CMV.  I don’t know why I couldn’t find this information on my previous searches (I even searched TORCH disease), but maybe now was the right time for the truth to start setting in.  Did Google know I wasn’t ready to see the real pictures of children disabled from CMV?  

Until recently my friends and neighbors who knew we were hospitalized would ask how Gili was doing and I didn't have any answers.  When she began treatment she had no symptoms I could see.  I didn't know how to measure her spleen and her head looked perfect to me.  But her little lacks of development began adding up.  She couldn't nurse well and didn't gain much weight her first couple months.  We were in the process of moving to Israel so she wasn't being weighed regularly.  She was hospitalized in Schneider Children's hospital in Petach Tikva, Israel the day after she was diagnosed with congenital CMV.  She was almost three months old.  We were there a week and a half while she received intravenous ganciclovir and waited for a PICC line.  She continued the treatment at home for a total of six weeks, followed by oral valganciclovir/Valcyte.  She is now down to one dose a day and we should be done when she turns one year old.  We were home from the hospital for one week and then Gili was hospitalized again with bronchiolitus and signs of pneumonia, and general trouble breathing.  We spent a very scary week trying to keep her oxygen saturation normal.  It was very different being in the hospital with an outwardly healthy baby waiting for a PICC line and being there with a very sick baby who could barely eat and breathe.  It was at that time that I gave up pumping milk for her and completely switched to formula.  She had no interest in nursing.  She still has no interest in anything besides bottles.  She acts like I'm trying to torture her if I try to let her taste some banana or sweet potato.

Gili was a surprisingly content baby, even through blood tests and examinations.  She slept a lot her first few months.  She smiled and laughed ahead of schedule and still seems to laugh hysterically for no apparent reason, like when I suction her nose or clean her ears.  She seems sick and stuffy often, but that could have more to do with our genes or with her older brother and sister bringing germs home.  (Big Siss just asked my husband, "How did I get pink eye?  No one has pink eye except me."  Let's keep it that way!)   People remind me to cherish these moments because they grow up so fast.  Well Gili doesn't.  I remember thinking with my other kids how I loved each new stage and missed the last one a little at the same time.  With Gili, I think, "Shouldn't she be growing out of these 3 month clothes?" or "Shouldn't she be holding her head up, or starting to sit, or holding small toys?"  The most exciting recent developments here are Gili's first two teeth.  She's not so happy about them, but I think they're adorable and it's so exciting to see real evidence that she's growing up.

I think I have the sweetest most beautiful baby in the world.  I'm not sure if the "devastating" news of Gili's CMV is yet to hit me, or if I just don't think that way.  At this stage she still looks normal and the developmental gap between her and her peers is just beginning to become noticeable to people besides my husband and I.  I imagine we will have to start telling people soon, when friends try to have our kids play together... their baby is cruising and playing and mine is laying in her stroller and can't even hold a toy.  I want to be able to tell my friends what's going on, but I don't need sympathy.  I feel like Gili is a little miracle and she is a bundle of mysteries.  As she grows we will discover more about what she can or can't do.  I don't let things surprise me.  If she can hear, I'll be thrilled.  If she needs glasses and still can't see well, it will be an interesting challenge, nothing devastating.  As long as she's not upset by the situation, why should I be?  I am grateful that we moved to a country with excellent medical care and no co-pays every time one of my kids sees a doctor (several times a week and growing).  I don't know what the future will bring for any of my children.  I believe that G-d gave me Gili with CMV.  She's a package deal.  If she didn't have CMV, would she have the other things I love about her?  Her sweet personality, her super soft cheeks, her sparkling blue eyes, her incredible laugh, her delicate feminine arms and hands, her breath, her dimples, the smell of dried drool on her cheeks, the pink of her lips, the way she breathes deeper when I tell her how much I love her?  I want to give my baby the world, and I pray with all my heart that she will grow up and have a fulfilling life, but I wouldn't change her for the world either.

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