40 Days at Home!!

I have said before that me not updating my blog is often a good thing because it means we’ve been busing enjoying our great life! Yesterday marked 40 days of Emma being at home! She graduated on April 30th after 323 days of being in the hospital since she was born!! She turns 1 year old on Tuesday (June 12th) and we had a small family celebration yesterday. She currently has 9 specialty doctors, most of which are in different office buildings around Orlando, so that means lots of driving to doctor appointments- usually just one or two per week, so it’s not too bad. However, it does take some time getting everything in and out of the car with her stroller, feeding pump, formula bag, Farrell gas bag, the ventilator, suction machine, stroller, Ambu bag, pulse oximeter, extra batteries for the equipment, the backpack full of supplies for diaper changes, medicines, extra trachs, etc. and then, you know, the baby. :) The 9 doctors she has are: her pediatrician, Gastrology, Pulmonology, ENT (Ears, Nose & Throat), Surgical, Ophthalmology, Genetics, and Orthopedics. Neurology got added recently so we’ll meet that doctor tomorrow. I’ve been on my official “maternity leave” since she came home and will be off for about another month to soak up all the time with Emma that I can! I am so thankful for my job, the supervisors, and co-workers!

Emma’s NICU graduation was the morning of Monday, April 30th: a day that will be celebrated each year in our family as her Homecoming date! We made a cap and diploma for her to use in pictures and many of her primary nurses came in to say goodbye even if they weren’t working that day. One girl made cupcakes and we had a little party in between talking to the pharmacist about what medicines Emma would be going home on and the dietitian explaining how much EleCare formula to mix up and to add a 1/4 teaspoon of Beneprotein powder to each 10oz batch. I wasn’t sure what time we’d actually be able to (FINALLY) leave the hospital, but I was very happy when the transport team arrived at Noon. Things moved quickly then. Michael pulled my car around and I signed all the discharge papers. Emma was put on the stretcher (NICU protocol) and loaded into the ambulance with Michael. I let him ride in the ambulance since I got to ride with her on the way back from Michigan in February. So I drove home a few minutes before they left to put our dog outside and Emma was home by 1pm!!

We had Home Health nurses for the first week that Emma was home. We had a nurse the first night, then a couple different nurses during the day (all for 12 hour shifts), but ultimately we decided that we were much more comfortable on our own, plus when the nurses were there we were doing all the work ourselves anyway since we had been looking forward to this for almost 11 months! 

In May Michael got everything (all of her medical supplies) very organized. He doesn’t really have OCD, but maybe just a light version of it, which keeps our house nice and tidy. There were several things we had to buy- non traditional baby items, like a table to do her trach care each night- and a lot of the “regular baby” stuff we don’t use, such as the fancy temperature monitored bathtub that we can’t use bc of the waterfall effect that could get water into her trach. Also the Diaper Genie. I wasn’t a fan and we got a regular trash can with a lid the next week. We got a big tool chest on wheels from Lowes to store most of Emma’s medical equipment and it fits perfectly between her crib and the wall. Michael labeled each drawer and fills them up each month with how much it will hold and keeps the rest of the supplies in boxes in the closet. He really wants me to post more about that in the next update. 

On our “nothing” days (when we don’t have any appointments), things are pretty chill at home and we bring Emma into the living room and alternate her between laying on the floor, hanging in her swing by the window, sitting up in her new infant chair, and dressing up for photoshoots!! She usually naps 2-3 times per day. Her birthday party yesterday was fun. Michael’s mom and grandmother are here for the weekend and my parents came down for the day. I made her a Moana cake from scratch and was pretty proud of how it turned out! She got lots of nice presents including new clothes, books, Veggie Tales DVDs, and a CD player! We still don’t have Internet at our house after we canceled it a few months ago (and probably won’t for a long time- it was way cheaper for me to get a higher data plan on my phone), so I’ll have to update with pictures next time I’m in a place with Wifi and have my laptop. Until then, keep the prayers a’coming!