We were supposed to go home yesterday. I was completely filled with anticipation as we drove to the hospital for what was supposed to be the last time. We spent the entire day getting ready to be discharged. Harper had another echo cardiogram, she passed her car seat challenge, she got her feeding tube taken out, she passed the hearing screening, Dustin and I watched three training videos, I packed up all of Harper's things, we filled out paperwork, the monitor company came to the hospital to train us on how to use Harper's at home oxygen saturation monitor, and then we were all ready to go home...except we still hadn't seen Dr. Robinson. Our nurse called him to see if he needed us to stay and talk to him or if we could just address any questions we had at our appointment on Tuesday in his clinic. He insisted we stay. Three hours later, we were still waiting on him.
He finally came at 6:00 p.m. to talk to us. He started looking at Harper's oxygen saturation level and through her chart at her levels for the past week or so and he was visibly upset with what he saw. He just sat there for the longest time...not saying anything. He said she should have completely normal levels since she has acyanotic heart disease vs. cyanotic heart disease. She should not have such low oxygen saturation levels. He was certain that we would end up in the emergency room in the next few days.
The frustrating part of all of this is that I've been asking about those levels for a week now. I've asked the nurses questions and I've asked her neonatologist questions about it. Everyone told us that her levels were normal for someone with her condition...that it was to be expected for her to "sat" in the low 80's. There is obviously a breakdown in communication somewhere. I think the cardiologist expects other doctors to know as much about heart disease as he does, but that just isn't their specialty.
I don't think I've ever experienced disappointment like I did yesterday. I'm disappointed for all of the obvious reasons: because I want to go home and be together with my family, because I miss Eli and Landon so bad it hurts, because I don't want to leave my tiny, sweet baby every single night, because I want to get some rest, and because we promised Eli and Landon that they would finally get to meet baby Harper and we got them all excited...and then we never showed up.
But more than all of that...I'm disappointed that my baby isn't well enough to go home. I'm sad that I've thought all of this time that she was doing so well, when in fact, she wasn't.
Dr. Robinson expected her to start showing some kind of symptoms related to the hole in her heart...he reminds us every time we see him just how large this hole is. He just didn't expect to see these symptoms so soon and that is concerning to him. Most likely, there is fluid building in Harper's lungs causing her saturation levels to be so low. So, he started her on medication to help her body get rid of fluid and we saw an almost instant improvement. When we went back to see her after shift change (the NICU closes from 6:30-7:30 a.m./p.m. for shift change), her "sats" were up in the mid 90's.
We don't really have a plan. I couldn't even ask the doctor questions yesterday because I knew if I opened my mouth and tried to talk, I'd turn into a crying mess. Maybe we'll have an opportunity to see Dr. Robinson again today now that we've processed everything.
Neva is bringing Eli and Landon to see me today. Nemo and Grammy are going to spend a lot of time with Harper this weekend while Dustin and I hang out with the boys and try to give them a little bit of normalcy among all of the chaos.
I'm disappointed, but I'm thankful that we didn't leave the hospital only to experience some kind of crisis at home. Harper is in the best place for her right now and I just have to have a little patience until we can figure out exactly what it is that she needs.
Thank you again for your continued prayers. We still need them so very badly.