Tuesday, March 29, 2011

Giuliana's story... VSD

As told by her mommy, Lori.
Giuliana is 3 years old.  She turned 3 on Feb. 15th.  I had a normal pregnancy.  No high blood pressure, no diabetic issues and worked out at the gym almost 6 days a week up to 8 months of pregnancy.  I did have single umbilical artery, which isn't very common but not incredibly serious.  Before I go on I should let you know that I am a labor and delivery RN so I was and am blessed and cursed with too much knowledge.  Single umbilical artery is if you haven't gathered, a condition in which instead of having 2 arteries and one vein feeding the fetus a person has one artery and one vein.  So I was monitored with non-stress tests once a week after 5 months.  I was induced 8 days early, on Valentines Day,  due to lack of evident amniotic fluid..........And Possum (Giuliana's nickname) was born at 5:25 pm on the 15th of Feb.  I was not in labor long and only pushed for an hour.  Giuliana had a normal APGAR of 9 and was perfect.........still is. 

  During Giuliana's post natal checks, the Dr's noticed a fairly prominent heart murmur.  I was not alarmed due to the fact working on any given day in post partum I could easily find a murmur in at least 7 out of 10 babies born.  Her's was loud and so we had a sonogram done.........and a visit with a cardiologist............and before we left we knew we'd have to have the murmur repaired due to a massive ventral septal defect,  before Giuliana turned a year old.  Uh..........Being post partum and lacking sleep, food and valium I was pretty stressed out but thankful the Dr's felt it was not an acute situation and I could take her home.  My husband, poor thing was very stressed. 

  We got home 3 days after Giuliana was born and had an awful time.  She had reflux, she wouldn't latch on and I was pumping what seemed like non stop.  I couldn't lay her down on her back without her barfing through her nose.....Which meant I'd keep her in her little chair for a half hour while I pumped and made sure she was burped fully.  I noticed about 3 days in that when I laid Giuliana on her side to try and nurse.......she would lose her color in the top half of her body and I could see a distinct midline purple marking where her blood was pooling to the lower half of her body (if you're nursing in a cradle position the part of the body of the baby that is in you're holding, cradling arm)......I had never seen that before but dismissed it as her just adapting.  She wasn't adapting, her blood wasn't circulating properly and a week later I noticed her respirations had increased, her lips had become cyanotic and her pulse was off the charts.  We went to the ER.............She was 3 weeks old.

  Im going to spare you all the time we spent in the hospital because I have a feeling you have been their......medication regulation, things working and then not working, hope and then hopelessness.  I will say that we consider every day with Giuliana a blessing.  We complain about very little after spending the amount of time in the PCICU with parents who had been there for months and felt guilty for leaving so fast after her procedure.  After her procedure we were informed that Giuliana had 3 other additional holes in her heart that were repaired and we are lucky that she will never need another procedure to replace or repair anything in her heart ever again.  I can't help but feel guilt hearing of those such as yourself who have lost a child.  I desitnctly remember telling Giuliana one evening shortly after her procedure that it would be ok if she left and that I was blessed to have her for the few weeks that I did.  And saying these words now and thinking of your loss and having to say good bye to your child brings a steady flow of tears to my eyes. 

  Giuliana is thriving now.  Still considered on the small side but having two Italian parents who are not small by any means I laugh at this statistic.  She eats, sleeps, poops, loves, plays, breathes, smiles, is the most defiant 3 year old ever at times and I still fight with wanting to spoil the crap out of her for what she's been through but at the same time knowing that I need to raise a strong and indipendant child and that spoiling her will no doubt bite me back in the ass at some later point in life. 

 Even though If I have another child, being 35 means I will automatically have to go through further screening to test for various defects, I will opt for more invasive testing just to make sure I won't have to go through what we had to with Giuliana with our next child.  I think parents, first time parents and young parents should know there are tests physicians can order to help shed some light on congenital defects of all kinds.


No comments:

Post a Comment