I'm up early this morning because our night nurse needed to leave at 6:00 and our day nurse isn't coming until 8:00. That leaves...me! It's actually alright though because Abby is sleeping soundly (she's not a morning person and is a real bear if you wake her up!), her continuous feeds are done, and she doesn't get fed again until 9:00. I'm sitting right next to her, but I can actually be on the computer for a minute while things are calm. (I can use the word calm because Matt has Caleb upstairs with him while he is getting ready--then we'll switch!) :)
So, the last 40 hours have been crazy...SO much harder than I thought they would be. I knew it would be insane, but I didn't count on all of the peripheral issues...like nurses wanting complete quiet in the room at all times. That's been a bit of a challenge with Caleb, so we're trying to find a happy medium that will keep the nurse happy and allow Caleb to be a four year old!
I think the hardest part is acknowledging that we can't do this on our own and that we NEED the nurses there to help us. But it's frustrating when we have to ask to hold our daughter and feel like we're getting checked up on when we care for her. I know they are trying to do their job too, but it's a tough transition.
The scheduling has already proven a bit difficult, as we had a nurse call out last night and then they had to scramble to get another one. This one was brand new to us, but we liked her. She had to leave at 6:00 and the agency forgot to tell us, but it worked out okay.
Our machines are a little bit frustrating because her apnea monitor and pulse oximeter go off constantly...for no apparent reason! A rep from our DME company helped me troubleshoot the apnea monitor, and it does seem to be working better now. The pulse ox just needs to be used for spot checks, so she won't have to wear that all of the time anyway.
So yeah...reality has set in, and it's hard. What has been the most frustrating for us is that big, looooong meeting we had right when we got home--the "admission" meeting. Have I mentioned how much I hate that term?!? This is not a hospital. This is our HOME!!! We felt like the business-like attitude of that meeting robbed us of the joy we had of coming home, and it was unfair. In retrospect, I should have just insisted that they come later. At the time, I was scared to be without nurses for any length of time (nurses can't come until the "admission" has been done, so scheduling it later would mean that we would be on our own for a while.) but I wish we'd just done it. Hindsight is 20/20.
Because of that and the fact that we've had nurses in our house 24/7, we haven't truly had a chance to just enjoy having Abby home. In the quiet of the morning, I can...and I like it. :)
On a positive note, Abby is settling in quite well. She was a bit irritable the first night and didn't go to sleep until 3 a.m., but we think she was just adjusting to her new surroundings. The nurses give her tons of attention and spoil her with holding and rocking! You should see her little smirk when they pick her up when she cries! She's already got everybody wrapped around her little finger!
Please don't stop praying for us now that we are home! This is just the next chapter in our story and it has its challenges too...many, many challenges. But we are thankful to be home and thankful for the challenges because we love our girl. We'll get to a good place...we're just crawling through the mud right now.