He Did It
I spent last night fretting, hoping and praying that Paxton would tolerate the aggressive approach doctors took all day yesterday in hopes of extubating him today and getting him off the ventilator that has been helping him for the last 8 days of his life. I am and have been prepared for setbacks, for bad news, for worst case scenario. Some may say this is a negative attitude, I like to call it cautious. I was given every worst case scenario for my son from the moment we found out he was sick. I prepared myself for those and knew that anything better than that was a gift. I have sobbed for him, laid on the floor in a puddle of angry tears wishing things were different for him. I have screamed how unfair this is, sobbed on my husbands chest for endless amounts of time. Wiped his tears just as he has wiped mine. I have begged and bargained with God to help our son. Yet, when I walk outside and feel the cool air hit my face and the sun shine warm on my body, I am reminded that Paxton is here and he is going to teach us things. He is here to show us what strength truly is and while there still may be many, many setbacks on this journey that we have just begun, I must share with you all what a glorious day today is!
PAXTON IS OFF THE VENTILATOR!
Here he is before:
And here he is after:
It is a huge step forward and an enormous hurdle jumped! He then got his central line and urinary catheter out! I can tell he feels like a new man to have all of that tape off of his face, he isn't sure what to do with all of his spit yet, and it bubbles and falls out of his mouth, but Ma Ma suctions it out for him. He is so adorable to listen to when he tries to cry. He doesn't have his voice back after having the tube down his throat for 8 days and his itty bitty cry is raspy and hoarse, but most certainly music to my ears! So, long as he does well tonight we may start oral feeds either tomorrow or the next day. I pray that he remembers and wants to eat, because not eating is what keeps most HLHS babies in the hospital. He took his "pappy" (it's what the boys called their pacifiers and I have to keep the nickname) just after extubation and sucked on it so hard you could hear it across the room. He is also rooting ( cocking his head to the side, mouth open looking for food) so I am hoping this all means he is interested in eating!
I have to be honest, I sort of feel like I am in a dream. I feel blessed to have Paxton doing so well and sometimes I just sit in the CVICU and look to the left and to the right of Paxton and I and see babies who are on/or have been on life support all within the past week. I couldn't help but stare at his new neighbor who was only one day old beside him on life support and wonder how God makes his choices...I try not to go there often, but today was such a glorious day for us and a dreadful day for others. This is how life works, I suppose and I just try to focus on what IS. What IS, is that our son is doing amazing for the moment. Our son has exceeded all of our expectations, thus far, and we must find joy and peace in that. I am almost scared to be so happy, waiting for the ball to drop, but I am learning as I go in a situation as difficult as this. It's ok to be scared, it's ok to be cautious, but I must also celebrate when it's time to celebrate. I must let myself be joyous when there is joy to be had. Today is a day of celebration and joy. Our son has made huge strides in his 12 days here on Earth. I was walking to my car tonight thinking of my life just 4 weeks ago and how far we have already come as a family. I am grateful, proud and overwhelmed with gratitude for what we have been given.
HE DID IT!
PAXTON IS OFF THE VENTILATOR!
Here he is before:
And here he is after:
It is a huge step forward and an enormous hurdle jumped! He then got his central line and urinary catheter out! I can tell he feels like a new man to have all of that tape off of his face, he isn't sure what to do with all of his spit yet, and it bubbles and falls out of his mouth, but Ma Ma suctions it out for him. He is so adorable to listen to when he tries to cry. He doesn't have his voice back after having the tube down his throat for 8 days and his itty bitty cry is raspy and hoarse, but most certainly music to my ears! So, long as he does well tonight we may start oral feeds either tomorrow or the next day. I pray that he remembers and wants to eat, because not eating is what keeps most HLHS babies in the hospital. He took his "pappy" (it's what the boys called their pacifiers and I have to keep the nickname) just after extubation and sucked on it so hard you could hear it across the room. He is also rooting ( cocking his head to the side, mouth open looking for food) so I am hoping this all means he is interested in eating!
I have to be honest, I sort of feel like I am in a dream. I feel blessed to have Paxton doing so well and sometimes I just sit in the CVICU and look to the left and to the right of Paxton and I and see babies who are on/or have been on life support all within the past week. I couldn't help but stare at his new neighbor who was only one day old beside him on life support and wonder how God makes his choices...I try not to go there often, but today was such a glorious day for us and a dreadful day for others. This is how life works, I suppose and I just try to focus on what IS. What IS, is that our son is doing amazing for the moment. Our son has exceeded all of our expectations, thus far, and we must find joy and peace in that. I am almost scared to be so happy, waiting for the ball to drop, but I am learning as I go in a situation as difficult as this. It's ok to be scared, it's ok to be cautious, but I must also celebrate when it's time to celebrate. I must let myself be joyous when there is joy to be had. Today is a day of celebration and joy. Our son has made huge strides in his 12 days here on Earth. I was walking to my car tonight thinking of my life just 4 weeks ago and how far we have already come as a family. I am grateful, proud and overwhelmed with gratitude for what we have been given.
HE DID IT!
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