Sitting here late at night, well early morning. Ive taken the meds the doctor prescribed for sleep, to slow my mind down so I can rest and they arent working tonight. I received an unexpected call from the ACH cath lab and they were letting me know Kane is scheduled for Feb 24th. It was shocking because when I talked to his cardiologist in December she said we would discuss the whole Fontan/Tr repair/transplant in March when we return for his three month follow up. So needless to say now Im on pins and needles waiting to hear back from cardiology to see what has changed and what the game plan may be or if they will decide after his cath which will be the best route. Ive talked to 2 friends tonight who let me vent my frustrations and anxieties. I think they think Im a little over analytical lol. But they listened and thats all I really needed. You see, Kane turns 2 years old on Friday! These photos were taken at the hospital when he was born and the day we left. The day we left the hospital with a tiny 5 pound 4 ounce baby who never had a pulse ox placed on his hand. The day we thought our lives would be complete with three healthy boys. We talked about the hunting trips, fishing trips, camping trips...etcc. And then even when we took him home, my motherly instinct knew something was wrong. He was too small, my other two boys were 7 and 8 pounders. They cried and woke up to eat. Kane would not eat and never cried. All he did was sleep. 11 days later we were introduced into the CHD world, and introduced to the horrible wordsHypoplastic Left Heart Syndrome. Introduced to open heart surgeries, tubes, ivs, pulse ox, oxygen sats, Gtube, bradycardia, tachycardia. Words I had learned in nursing school but never knew I would use them every single day for the rest of my childs life. I NEVER KNEW! You know who knew?! You know who knew when I was born that 30 years later I would be given a special needs child!? The Lord knew! Tonight, I have to stand on the promises that he knows so if he knows its okay that I dont. Its not meant for me to know, if I knew ahead of time how Kanes life would fair, then would we be living it the same way? I dont think so. Yes, we take precautions, yes we we worry about the unknown but we also let him LIVE and experience everything a normal baby and toddler would. God has a purpose and plan for everything. Some days are harder than others for me to come to terms with this! Some days I cry but every day I thank God for one more day that I can watch Kane interact with his two brothers who love him unconditionally are enjoying teaching him new things! So, lets celebrate this miraculous 2 year old with half of a heart on Saturday and then press on to see where God leads us! Thanks you for following us! For praying for us and for caring for us!
Posted on: Thu, 22 Jan 2015 07:49:45 +0000