Friday, December 26, 2014

It Never Rains, But It Pours...

It has been a hell of a few weeks and it hasn't slowed down yet.

Three weeks ago I was diagnosed with a genetic condition called Hereditary Angioedema, I also suffered through an intestinal attack of the above condition. Three days later I was laid off from work, six days after that we received C4's official Autism diagnosis with a Developmental Coordination Disorder chaser. Three days after that Baby Girl came home (Yay!) and C4 got his 2nd or 3rd cold virus in a row (boo). Six days after that, The Husband had a stomach bug and I shifted from sleeping in my living room, to sleeping in my mother's living room. Three days after that, we had Christmas.  One day after that at about 9 in the evening, C4 broke his elbow.  Tomorrow, he'll have surgery to reduce the fracture as it must be absolutely perfect if he is to have full use of his elbow in the future.  As always, surgery with a cardiac kid is slightly more complicated and slightly more risky.

Here's how it happened: The Husband brought C4 up the stairs crying and I noticed his elbow was very swollen and just looked "off" to me.  I told The Husband I thought we'd have to take C4 to the ER for evaluation.  C4 said "This is just so uncivilized"  (we laughed, it was funny...) C4 was very upset and very much did not want to go see a doctor.  He's had X-Rays and they have a game plan.  They're going to admit him to the big hospital and will get a cardiac consult first thing tomorrow morning with surgery later in the day.

I'm home with Baby Girl.  This will be the first time C4 is inpatient and I cannot be with him.  We absolutely cannot risk Baby Girl picking up something at the hospital.  She's still very fragile and will be for quite some time.  C4 is also very prone to viruses, so that's something to look out for while he's there.  

I'm so torn, I desperately want to be there, but I know I cannot.  I need to hold my son and I cannot be there, I don't know how to find balance.  I really need things to stop spinning so quickly, it is impossible to regain equilibrium.

Baby Girl is doing a great job of gaining weight.  After a slow start her first few days home she jumped to gaining 73 grams a day on average.  Then, I ran low on Human Milk Fortifier and we had to go down to 2 fortified bottles a day, she only gained 34 grams a day, but that is still more than her goal of 20-30 grams per day.  So that's awesome.  She is just shy of 6 lbs 14 oz at this point.


  1. Oh my what a week.I'm so sorry its been so crazy. I can totally understand how you feel about leaving C4 at the hospital. Will hubby be able to be with him then at least it wont be totally strange. Or could you leave Baby girl with someone even for a little while so you can be there when C4 wakes up from surgery. Praying it all works out for you guys.

  2. This is what I get for reading things out of order. That is a LOT of stuff to go through in a short period of time. I am thinking of you.