What are the holidays like after 5.5 months in intensive care? Well, they're quiet, incredibly special, filled with wonder and magic, relatively peaceful, and still a little stressful. We are considered homebound. No one crosses the threashhold into our home with very, very few exceptions. No one was allowed in for Thanksgiving. Addie hadn't been home 2 weeks yet, and we were entering cold, flu & RSV season. Not the ideal time to be so fragile to say the least. From November - April RSV is a tremendous threat to all infants and especially to infants who have been immunocompromised like Addie. Addie has weak lungs because of her premature birth. They weren't fully formed when she was born, so they were weak to begin with. Add 2 months on a ventilator, and you have the recipe for disaster should she get anything respiratory, like RSV. It is a direct ticket back to the ICU and most likely time spent back on the ventilator. As adults, we could be carrying or even have RSV and not realize it. It has little to no impact on our bodies, so it is easy for one of us to accidently infect Addie. All we can do is limit her exposure, and that's exactly what we are doing. She also gets special RSV shots once a month to help her in the event that she gets RSV. Basically, they are injecting her with manufactured RSV antibodies that will help fight of the virus should she contract it. We are engaged in full blown anti-germ warfare, trying to keep ourselves, the house, and Addie's environment as clean as possible.
So, Thanksgiving was very quiet. Philip met my dad to run in the Turkey Creek Thanksgiving Day Hot to Trot 5k, and Dad delivered our Thanksgiving meal to us. We enjoyed a quiet day at home, and I even ventured out to Target to grab a couple of things early in the day. It was kind of nice having such a relaxed, demanding-free holiday. For Christmas, we decided we should allow the grandparents to visit for a couple of hours. Philip's parents came up on Friday, December 23, and we opened presents with them, and my parents came up on Christmas Day to open presents and have lunch. Again, it was really nice to have a simple holiday.. .I think so much of the season is lost in the hustle and bustle and expectations. ..we were blessed to be able to spend lots of quiet time together as a small family of 3 with a few visits from family to make it feel special. We were able to enjoy movies, and laughter, and quiet time cuddled up on the couch.
This Christmas meant more than any other, and I know most of that was because of Addie. I have always understood that God sent His Son Jesus to us on Christmas, and that is what we truly celebrate. It wasn't until this year that I fully understood what that meant. God sent His SON - His Addie - away to a dangerous place so that ultimately He could die so that people like you and me could go to Heaven to spend eternity with Him. I have had to face death with Addie several times, and there is no more terrifying situation. Nothing hurts your heart and soul more than to see your child suffer, and He sent His Son, His Addie, to earth, knowing He would suffer greatly, be rediculed, and die a humiliating, terrible death. I simply can't imagine. I love you all, and I love you all even more for going on this journey with us, but I can tell you I wouldn't sacrifice my Addie for anyone on this earth, past, present, or future. I would sacrifice myself before I would sacrifice her. So, reading the Christmas story meant so much more this year. I could empathize with Mary, and I could see Baby Jesus as I stared at Addie. We don't deserve what He did for us, but I am so thankful.
Addie is doing amazingly well at home!! Her ROP is officially regressing!!!!!!! Her shunt is doing its job, and her last head ultrasound showed improvement in her ventricle size. She was 8 lbs. 9 oz last Wednesday, and she hasn't been weighed since. She's definitely gaining! She's too big to lay in my lap from my waste to my knees; I have to angle her or bend her knees up! She's been slow on the take up with bottle feeding and her Occupational Therapy thanks to the return of varying degrees of reflux / small stomach too full making her incredibly uncomfortable. She spends most of her energy just getting through a feeding, and sleeps the rest of the day. No time to work on developmental skills, and taking a bottle is entirely uncomfortable, so she just won't do it. We've increased her reflux meds, though, and in the last week she's made great strides with her OT visits! She is starting to try to hold her head up on her own, and she even lifted her head once this week while we were attempting tummy time! She's more curious about her environment and is starting to grab at her toys. Go, Addie, Go!!!!! This is all HUGE for her, and for us too, even though I know it's just par for the course for most 2 - 3 month olds. I'm just thankful she's here to celebrate these "small" feats like they were the biggest deal in the world. I know I look silly cheering and clapping for her at the top of my lungs when she grabs a rattle or tries to roll over. I don't care! She's been through so much, and she is still showing signs that give us hope that she will grow up to be relatively "normal". She is starting to out grow her newborn outfits, too! The size difference between newborn and 3 months is pretty gaping, so we're wearing a little bit of both right now.
Our Christmas decorations are still up, and they may just stay up for a while. ..we have so much to celebrate, and the decorations just seem appropriate. ..
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