We have been caught up in a whirlwind of activity this week. After 125 days, Benjamin finally came home this past Monday afternoon!! All the things we prayed for have come true..... Benjamin felt fresh air, saw clouds in the sky, and experienced what it feels like to have the sun on his skin.....God has truly blessed our family with a genuine miracle. As we left for home, the first country song on the radio was 'History in the Making', it was perfect. We left behind a wonderful group of caring people at the St. Louis Children's NICU....and although we will truly miss them, we are so happy that we are all home together where we belong. It has been nice to call the NICU to give THEM the updates on Benjamin, instead of calling them to find out how he is doing.
Now that we are home, we start the next phase of this journey. Ben is going to need a little extra love, care and work to make it to the 'normal' milestones....he is currently still on oxygen and a feeding tube. The adjustment has gone pretty well so far, it was rough the first few days, but it is getting better. We love having him here and he loves how crazy the girls are around him. What I originally thought may scare him, he seems to love...all the squealing and laughter, the girls are just nuts in a good way :) Ben is so amused by them, he just watches them, coos and smiles really big. Both Emma and Elsa can't get enough of him, they both want to hold him and give him tons of kisses.
Obviously, we are happy to do whatever he needs to give him the best chance in this lifetime. While we have experienced this change in the past week, we are realizing how intense his care regimen is. He requires medications every 4 hours around the clock and we are still working on his feeding schedule and his therapies that need to be done with him daily. He will have nurse visits, physical therapy, occupational therapy and speech therapy weekly and multiple appointments for follow-up at Children's.
We would love to make it around to show him off to everyone, but unfortunately with all his equipment, and it still being cold and flu season, we won't be taking him anywhere except for his follow-up appointments. A simple cold will not just be a 'simple cold' for him. Since his lungs are still compromised, an infection of this sort could land him back in the hospital. Also, it's quite an ordeal getting him out of the house....we took him to his first doctor visit yesterday and it took us nearly an hour to get him and his equipment ready to get out of the house. Granted we were nervous about forgetting something he needs, but we had to have his breast milk and feeding pump, portable oxygen, pulse ox and his normal diaper bag goodies. We are looking forward to him getting stronger and easier to transport, (or just getting us more used to all the things we need to bring)....and then we can start showing our 'lil miracle off. Until then, we will continue to update the blog...We intend to do this more than we have these past few weeks....Please continue to pray for health for him and the family and for continued improvement for Benjamin.
With love and thanks for all the prayers,
Kelly and Dave
