Communication Frustrations

Today started out as a bad day for me (not for Will, he's awesome!). Among other early hurdles, I overslept and had to skip breakfast to make it to Will's room in time for rounds. I managed to get there less than 5 minutes before the doctors...whew! Rounds were great! The doctors said he has amazed them with his progress in the last 3 days and overall. Dr S (the heart surgeon) even said he swore that Will would be a typical hypoplastic left kid, and now looking back is truly amazed and knows that the Norwood (first open heart) would have been the wrong thing to do. He said "patience for the patient" was key for Will. I AGREE! He has no more lines in, his only wires are to his heart monitor and pulse-ox, and he is eating like a champ (45-50ml every 3-3.5hrs).

During rounds it was confirmed that Will would be moving to the NICU today. But when was decided. So I pumped, fed Will, met with Dr Awesome, he had an echo, talked with the PICU doctor, pumped again, talked with Dr Awesome about Will's echo (his heart is now functioning at an almost normal level!!!!!), he had a physical therapy session and then I realized I was starving because it was lunch and I hadn't eaten all day yet. So I ran down to the cafeteria and grabbed a piece of pizza to eat in Will's room. When I got back, it was time for his big move, so I had to scarf down the pizza and pack up the last of his room.

His move to the NICU was so cute (I wish I had taken a picture)! They made him a bed in a wagon and he had his first wagon ride down to the NICU. They said he was so stable he didn't need any monitors for the ride there, so why not let him ride like a normal kiddo.

Here's where my day got way more frustrating...

I have been spoiled by both the NICU Julianna was in and by Will's PICU room (mostly by Will's PICU room, it had huge windows and a couch and was very roomy), so I knew there would be an adjustment going to a NICU that had multiple babies in each room, but it is much harder than I expected. Will's room has 7 babies in it (3 in his pod), there are no windows (most NICU's don't have them), and because there are preemies the lights are kept very low. Big change from his PICU room. Once his PICU nurse Laura (whom we really liked) left I felt so alone.

I learned the communication between the PICU and NICU is apparently not that great. They saw him as any other "sick" baby they would get. He was going to be there at least several days for observation to make sure he was stable enough to go home and then he would be assessed for discharge. WHAT?!?!?! I was told by the PICU doctors he was definitely stable enough to go home that he just needed to prove his eating skills. Then they tried to tell me they needed to teach me how to measure and administer his meds, which I had been doing all day up in the PICU already and was told I was checked off on. Then the NICU doctor started to add meds to his regimen...SERIOUSLY?? I was getting frustrated.

Then lactation came down. I was told they wanted him to nurse, which is fine, I would rather nurse than pump anyway. But they said nursing would delay his coming home and that even nursing he would come home with orders to supplement with a bottle at every feeding. If I was still going to have to pump and bottle feed every feeding, why the heck would I try the nursing and delay him coming home. I said I would pump and bottle feed and then I got a huge lecture from lactation about how that isn't a good idea and that my milk supply would never keep up and I wanted to scream at her, but instead I calmly told her a pumped for Julianna and never had an issue with my supply. She still tried to convince me to nurse and wrote up orders for me to put him to breast at every feeding I'm there. She just wouldn't listen to me.

He got evaluated by a speech therapist for his eating abilities. He did well, just needs a slower flow nipple (and possibly my milk thickened) because he aspirated a little bit while eating. She isn't too concerned though because he then coughed and was better.

Because Will is now a NICU patient we have to go through all the discharge hoops. We have to watch all kinds of parent education videos, prove we can feed and bath him, and all kinds of other things that seem silly since he was only supposed to be in the NICU for 24 hours.

Then a resident came in and said they were concerned with Will's heart rate being a little low. I tried to tell them that it had been that low for the last few days and that Dr Awesome wasn't concerned. They said it was a concern. UGH! They added neuro evaluations every 4 hours, why I have no idea! I was so frustrated at this point I left to pump and started to cry. How could one department think he was so ready to go home and then the next think he wasn't stable???

My parents thankfully came up to see Will, and calmed me down and ate dinner with me in the cafeteria. When I got back to the NICU, Dr Awesome had been there while I was gone and, because he is so awesome, straightened out some of the mess. He told them Will is there strictly to prove he can eat enough, that he doesn't need neuro evals or extra meds, that he is a stable patient and can go home as soon as he is eating well enough, which in his opinion he was already doing. I seriously think Dr Awesome is my favorite person in the whole world right now! He has been such an advocate for Will, and we are so thankful for him.

I am hoping that when I head back to the NICU in the morning things will finally be straightened out and there will be a plan for Will and his homecoming.