He is now moving his hands close to his mouth almost like he wants to suck his thumb. The nurses gave him a pacifier in the night and he is the most comfortable we have seen him in days. He is snug as a bug and seems to love his paci. DJ and I have taken turns changing diapers, taking his temperature, and taking a sterile qtip and dipping it in my breast milk to put in his mouth. He continues to be fed 1cc of breast milk every 6 hrs through his feeding tube, but he seems to like the taste of the milk in his mouth too. Dade is tolerating it well in his little tummy! We are very excited that the pumping is paying off for him. When we got to the hospital today, one of the nurses had downloaded the Lullaby Pandora station on her phone and it was wrapped in a glove on his little bed. He seemed to enjoy the music and again seemed so relaxed. That nurse, Nancy, encouraged us to also bring some sort of mobile for him to look at as he has been more awake and alert lately. We love being able to look at him, talk to him, read to him, and just see his precious blue eyes.
DJ and I made an afternoon Target run to get a few things, including the mobile for Dades room. We hung it over his bed and turned on the music. He had been so calm and peaceful all day, but that got his blood pressure up and he didn't seem to be fond of the turtle, starfish, and other sea creatures hovering over him. We immediately took it down to see if that may help and sure enough, his blood pressure went down. Epic fail on our part, but atleast we took it down and kept the receipt:)
Our days in the dark and quiet hospital room are long, but we wouldn't be anywhere else! We are so in love with this little boy that God has given us! Many friends have encouraged me to "not be so strong," but I can assure you, I cry on a daily basis. I don't ask God why, but it is excruciating to see any child, much less your own hurting, mad, and crying, but not being able to hear him because of the ventilator. We cant just scoop him up and console him like we want to. There is NOTHING that we can do to make him better.
Its been a busy week of ups and downs. We have seen good xrays that give us hope that he may be ready to come off of ECMO and then Saturdays/Sundays that were discouraging. This condition is best described as a roller coaster and its truly one step forward and two steps back. His "good days" can change within a matter of minutes. We have loved having friends and family come to meet him and visit with us. Please call and ask when would be a good time to come, but always know that if its not a good day for him, we may not have visitors that day. The nurses told us this weekend to limit guests to 20-30 minute visits for everyones sake. The room where he is can get pretty crowded with two nurses, DJ and I, Dade and all his machines. Also, its an ICU unit and visitors in general need to be limited. Please continue your prayers through this journey. I keep asking God to NOT let me miss whatever he is trying to show and teach us through this. I have NEVER been a fan of roller coasters and certainly don't like the one we are on, but we know there is a reason for each day we are living through this. Dade is one lucky boy to have all of your love, support, and prayers!
Some Pictures from the week! This was today getting some good sleep and liking the new paci!
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