46 Days Old

Every now and then Alexandria will wake up, open her eyes, and be perfect lucid. She’ll look around, and act like she doesn’t have a care in the world… these are the moments I think to myself, “She’s fine, she seems just fine.” She had a moment like that last night, around 10pm. Kim was holding her and I grabbed my camera to take some video. She had such a bad day yesterday, then for a few brief moments at night was perfectly happy.

It did not last though.  For the better part of today Alexandria did not have a good day.  She was pale, congested, and unhappy.  Dr. B, Alexandria’s pediatrician, called the house around 6:30pm this evening and told Kim, “I don’t know why but something just kept telling me I had to call today.”    He said he’d thought about her all day and had to call.  We talked briefly and he decided to come by the house and arrived around 7pm.  Again, a doctor that makes house calls, and at 7pm, what a fantastic blessing.  He listened to her heart and he heard the same murmur that Jessica (hospice nurse) and I have both heard.  He said there was no mistaking that her heart was not operating in the same way it was a few weeks prior.  When I listen to it the swoosh sound is overwhelming, almost to the point of drowning out the beats.  He checked her skin/feet and as we feared her circulation is not good.  He did feel that she was fighting the cold off better then he thought she would be, even though she’s very congested.

Kim and I have had many talks about what we would do if her heart became a problem.  Do we have surgery or not…  In the end we’ve decided we don’t want to put her through the pain of open heart surgery, and we do not want to risk her dying alone on an operating table cut open.  But, I did ask what he thought was possible, could surgery fix the problem, what would her chances be.  With her apnea, which is a brain centered apnea (her brain forgets to tell her body to breathe) and not a mechanical type of apnea, her other trisomy 18 related conditions, he does not believe she’d survive surgery.  He also wouldn’t put her through that pain, which he has seen children go through before, and it is very painful surgery.  It was good to hear from someone else, a professional, that Kim and I seemed to be making the right choices.

It is such a horrible feeling to fear you aren’t doing enough for your child.  Sometimes I think, “My God how can I think of not trying to fix this to help her live longer.”  To make this choice and pray you can live with it.  To pray that I’m doing the right thing, choosing for her to live warm, loved, and surrounded by family, without feeling that I’m choosing for her to die.  That I am sentencing her to death.  When my mother was in hospice, a few days before she passed, she began to forget what was happening.  One afternoon I had gone into another room to fall apart in private and my sister came in and said, “Mom has woken up and she’s asking what’s going on.”  I had to pull myself together, go back to her bedside calmly and explain to her that she was dying.  Why she was dying.  What decisions she’d made about her medical care.  Comfort her and help her understand reality.  I cannot do that this time.  I have no way to explain to Alexandria what’s happening to her, why it’s happening to her.  I hold her and I can’t keep it together.  I try so hard to comfort her, but there’s no way for me to help her understand…. hell I don’t understand.  I want to know I’m doing the right thing.  I want my little girl to believe I’m making the right choices.  I am so afraid that she won’t understand, that she’ll think, “why didn’t you do more daddy?”  I am overwhelmed with fear, pain, and guilt.

People tell me I should sleep.  If you watch that video, you’ll understand why I don’t.  I’m not going to get many moments like that.  Moments I can look her in the eyes, while she’s awake, tell her I love her, tell her I’m trying to do right, and ask her not to go.  Who’d ever want to chance missing those moments?