Wow it's been a while since I last wrote. "No news is good news" which is why I haven't felt the need to update. Plus we've been in touch with mostly everyone since Ben's hospitalizations.
Since November, we enjoyed a really nice Thanksgiving here in Charlestown with my in-laws and Matt's sister Tiffany. Follow-up appointments have gone well. Ben's ECHOs have continued to look good decreasing his need for oxygen yay! We weaned him weekly in December to the point where he's just on oxygen at night and in the car. On 12/23 we slept overnight at Childrens Hospital for a Sleep study to evaluate him off oxygen altogether. It was a trying night. Ben was connected to 30 wires all across his head and body. Being that much older and wiser he wasn't happy about it and very fussy trying to pull them off every which way. It was difficult to feed him and trying to sleep "as we normally would." We didn't miss the hospital environment that's for sure but the excitement of Christmas the next day held me over until 6am and we could leave. The results take up to 2 weeks and since we've had two holidays in between, even longer, for us to get the full report.
Christmas was wonderful and busy. We traveled with Ben and his oxygen and he was able to meet many cousins on both sides of the family for the first time including Nico who was born 2 weeks after Ben! We also enjoyed a really nice day at my grandfather's house whose 87 and hasn't been doing well these past few months. Ben brings him so much joy and it was rewarding to see that. New Years we spent making homemade pasta and lobster fra diavolo. Ben slept through the ball drop. Toasting to health and happiness rang especially true this year. I'm confident 2015 will bring us so much joy and I can't wait to see Ben achieve more milestones.
His "laryngealmalacia" or throat issue that causes noisy breathing has been stable. The doctor is taking the wait and watch approach which I appreciate. He's been gaining weight on a higher caloric formula and is around 11lbs. Ben's working with occupational therapy to strengthen his motor skills which at this age is just head and neck control and some trunk stability.
He just started really smiling at us which is the cutest thing ever and lots of "cooing" He gets a kick out of when Matt plays Frank Sinatra and they dance. He loves his swing and watching his Winnie the Pooh mobile. He's fascinated by light up toys especially his glow worm, happy bear, and discoball turtle night light.
We've totally enjoyed being home. I'll admit many quiet nights and Homeland marathons. I'm convinced there is nothing better than a sleeping Benjamin on my chest. His cute breathing noises, warmth, sweet baby scent, and chubby cheeks when I look down. I'm trying to cherish this precious time before I go back to work in two weeks. I ended up taking a part-time night shift position which allows me to be home the most and Ben will always have either me or Matt home with him. It's the best case scenario for now. It's still on a stem cell transplant floor but I'll miss my coworkers tremendously who have been nothing short of amazing these past few months. Matt just accepted a new job here in Boston at a private equity firm and starts the same week I go back. Lots of good change on the horizon.
This week brought our first blip on the radar in a while. Vomiting + fevers up to 101. His pediatrician sent us to the ER on Tuesday to make sure we weren't overlooking anything. We went to Childrens ER which was a much more pleasant experience than the MGH ER episode. It was really difficult seeing the dude get stuck 5x for IV access and blood draws. He wailed and shrieked and I couldn't help but cry with him. His blood work didn't show anything concerning thank God. His heavy breathing and fussiness improved after some Tylenol. He was able to feed normally and they sent us home thankfully. We are nearing 48 hours since it started and I pray it finishes riding it's course today. He was seemingly better yesterday despite the fevers but he just projectile vomited twice again now. Matt just braved these sub-zero temps and ventured to 24 hour CVS for Pedialyte since his formula might be too heavy for his tummy right now. I know it's hard for every new mom to see their newborn sick but I've seen enough already and pray he's acting like himself again soon. I probably added a few more grey hairs this week.
Going to try and catch a few winks of sleep again. Thank God for coffee.