I not only tackled getting Eli off to school, but I also managed to pick him up on time! I know crazy!?!? Just in time to grab lunch and get Ethan ready for a L O N G 1st visit to Dr. Weller's office at Children's cardiology. Thank HEAVENS for family. my sister came over last week to give us haircuts. She put clothes away (YAY!! SHE'S AWESOME!!) My parents kept Eli this weekend- they went camping. It's all he has wanted to do all summer. There was no way I was camping during the 90+degree weather! My mother in law and father in law are right there to help out with keeping Eli during dr visits. I've learned really quick, that if someone asks to help- they really want to :)
So our "couple hour" cardiology visit turned into a 5 hr trip, including travel time to and from. I was solo for this trip. Matt was working. I actually sent him to work, thinking no big deal I got this... Little did I take into consideration of the exciting morning of Eli's 1st day, drive time, feeding Ethan, packing up the car for just an office visit, walking across campus to even get to the office (1 mile)!!, the actual appt- included vitals, EKG, quick echo, speaking with his nurse, nurse practitioner, then the dr. WHEW!! Everything looking good. He is up to 8lbs 2.5oz!! His breathing is starting to get a little more labored (breathing quickly, using his belly to breath, using his muscles bettwen his ribs, ect) especially with feedings, diaper changes, honestly any real stimuli. Dr. Weller has started him on a low dose of lasix, to help decrease to workload on his heart- hoping to buy us more time for his lungs to mature, so he can get a little bigger before surgery. I feel he looks good, but this has always been "Ethan's normal", but it's not normal- I know this... He still really can't say when his surgery will be. He feels more than likely closer to 4 months rather than 6 months.
On a good note, I'm amazed at what all of this has done for myself and our family. Everything we have been through has brought some pretty amazing people into our life. I've met a couple other mom's in the past couple weeks, who have had little ones in the last 3-4 months who are on the same journey as Ethan. It wonderful to share stories and experiences. I got to me another mom today at Children's. Her name is Allison, and her little girl's name is Adalyn. She has open heart surgery the same week we were discharged from the hospital. It sounds as thought her surgery was far more complex when compared to Ethan, but she is doing great and hope to be home soon!
I think I'm hanging in there fairly well. Exhausted... yes, but who wouldn't be- Eli is exhausting lol!! The meals or gift cards that friends and family are bringing over for us are a HUGE help. It's days like today when it's certainly helpful.