And Then...............

  Luckily, Lily did make it thought the emergency vascular surgery.  They caught the tear in the artery immediately when it happened and took the necessary steps to stop the bleeding.  When she finally was wheeled back to the CICU we were brought in to see her only to find her right leg completely wrapped in hot packs.  One of the attending doctors came over and explained to us that Lily's leg would appear "grey in color".  This is due to one of the main sources of blood flow to the leg- the right external iliac artery now being clamped off.  If this were to happen in an older adult, there is a greater chance the individual would lose their leg.  However, with children they tend to form collaterals which are then able to feed the leg with the blood supply it needs.
  I remember thinking at that moment, "Why us?  Why my Lily?"  It is so easy to get down on yourself, and trust me through this never ending journey I have been down on myself a lot!!  I knew their would be ups and downs, but after giving birth, and 2.5 weeks in the hospital with very little sleep I had my fill!!
  Lily did slowly recover from the torn artery and emergency surgery, but it was a slow process.  To this day she still complains of pains in that leg which I am not sure whether to chalk up to growing pains or residual issues from the surgery?  In all honesty, it seemed to be the least of everyone's worries......... 
  Our next main hurdle, and one of the BIG issues for many heart kids was eating.  With the ineffective nature of the way their hearts pump blood, these kids tend to burn a lot of calories when they eat.  So, the goal is to feed them extra calories per feeding so that a portion of those calories can help them to gain weight.  We were told from day one that if she didn't eat enough to gain weight, the NG feeding tube would remain in, and we would be sent home with it.  Without making an entire post on eating, I must say we tried a lot, and I cried many tears.  
  We started with breast feeding, but Lily just did not have the energy to suck for more then 2-3 minutes at a time.  We tried fortified breast milk, but the stress of the hospital stay etc and made it hard for me to maintain my milk supply enough.  We went to regular formula fortified to 27 calories, but Lily's poor stomach couldn't handle the thickness or the amount of gas it was causing.  We finally determined she had a bad case of acid reflux, and she was placed on regular doses of Zantac.  That is addition to a hypoallergenic formula (Nutramigen) seemed to finally be the combination we were looking for.  But could we ever get her to take enough??  I remember very clearly crying tears at every feeding just to get her to consume the 75cc that she needed.  If she could only eat more, a little bit more!!!