Challenges

This is the last thing I wrote about our hospital stay. Undortunately we ended up being there for a whopping 5 weeks! BLEH. But here's a little of what was going on that week.

Friday March 20, 2015

Things with Trevor have pretty much been the same, except that he ended up needing oxygen on the 16th because his sats kept steadily decreasing. He held off for almost a week, which was amazing, but now he’ll have it for who knows how long. But some good news is that he doesn’t need any IVs anymore! It was awful to have them sticking needles in each hand, foot, and eventually his head, so I’m way happy he doesn't need it! They removed that last one placed in his head on the 15th :) As for me, I am doing “hotel stay” here in the hospital. After I was officially discharged, I moved out of my postpartum room and into a smaller room across the hall and closer to the nursery. It’s so nice that Altaview has this option! I get to stay in this room for FREE as long as Trevor is still in the hospital :) Even tho we only live 8 mins east of the hospital, it’s a huge blessing to be able to sleep there, have a room to pump in, keep my things in, and just not have to come and go all day long! And since we are so close, I can still go home to eat dinner, do laundry, etc. So that’s worked out really nicely :) But…. today was AWFUL! At first… but it got better haha :) Here’s the 411.... Last night Braxton didn’t didn’t get  back from school till late and was only able to be at the hospital with Trevor and me for an hour before he had to go home to sleep because he had work early the next morning. I’ve missed him a lot this week since he had to get back to regular life! And since we left my postpartum room and switched to the Hotel Stay room, he’s been sleeping at home because there isn’t a good place for him to sleep in this new room. It’s been hard because even tho we’re not in the same bed, I miss not having him in the room with me. But as much as I want to be with him, I don’t want to sleep at home and leave Trevor here “alone” (and by that I mean without me, even tho there’s always nurses in there!) all night long. So, as Braxton got ready to leave I started crying of course. I was just done with it all and honestly going a little stir crazy sitting in the hospital all day. I couldn’t control myself and I felt so bad because Braxton was convinced he needed to stay with me, but I insisted that he didn’t because he needed good sleep. Reluctantly he went home and I stayed at the hospital. Booo.

So then this morning I get up and trudge down to the nursery to hold Trev during his 9 AM tube feeding. There’s a new nurse in there who I’ve never seen and who’s never taken care of Trevor. When I saw him he didn’t have his splint on and his arm was just laying by his side. I wasn’t too happy about this because that’s the one position it should never be in! If it’s not splinted in his brace than it has to be wrapped up with his arm across his chest. Frustration people, frustration. Then while moving him around changing his diaper and what not, he starts crying. He never cries and so I didn’t know if it was because of his arm hurting, he was hungry, both? Something else? But no mom likes her baby to cry. So they finally got it wrapped up against his chest and he’s ready to eat.

As I mentioned before, this was supposed to be a tube feeding… the nurse has a bottle out for him. I asked why and she said that since he was awake and looking hungry, she wanted to give him some oral gratification with the bottle. Ok… I wasn't super happy about her switching up his schedule but didn’t ask further questions because I’m non-confrontational and don’t like to ask questions. THEN she decides to give him his milk through a new bottle, with a slow flow nipple because she didn’t think he was doing very good with the other ones. That didn’t make sense to me tho because the speech pathologist had watched him eat a couple times with the regular bottle and said he was fine. Ugh. I felt like there was a lot of inconsistency between the nurses and what those on the developmental team was saying. Ugh. Again. So then Trev wouldn’t eat…. at all. So he had to take it through the tube anyway and the stupid bottle was all for nothing. And I was worried that his feeding sched was all turned around now. Then the pediatrician comes and talks to me and says that he’s not making much progress when it comes to his weight and that she was gonna have a consultation with Trevor’s pediatrician and Neonatologists at Primary’s to talk about his long-term goals.  It was all very discouraging and it took everything in me to not cry before I left the nursery.

As I’m about to go, I see an envelope that says “To Mommy and Daddy, Love Trevor” taped up to one of the many monitors hooked to his bed. I read it once we were back in the room. This is was it said:

I was crying the second I opened it haha! Marissa, the sweet nurse who was taking care of him the night before (who had also taken care of me postpartum) took the time to write that card out and include the small accomplishments. Holy cow, how did she know that’s what I needed? She listen to the Spirit, I guess, but I’m SO glad she did! So after that I was fine for a bit. Then Mom calls. Flood of tears all over! So of course she hangs up the phone and is down here 10 minutes later. Gotta love Moms :) She listened to my frustrations and sobs and decided to call the people on the developmental team so we could see if they agreed with what the nurses were doing. We talked to the Speech Pathologist and she resolved my concerns over the bottle and told me what needed to happen with his arm. She also called the nursery and told the nurses that info too, to make sure it happened. Then she pep-talked me and reminded me that I’ve gotta be Trevor’s advocate and speak up if I’m not happy about something or ask for clarification when I need it. But she told me that I’m doing great and said being a mom isn't easy, especially when the baby’s still in the hospital. It was perfect :)

Braxton came home from work a little early, which was SO nice :) I cried some more and we went down to the nursery together with my mom. Once down there we talked to that nurse and I asked her why she was doing the things she was… and it all made sense. I was fine with it! But I didn’t understand that this morning because she didn't explain it and I was too shy to ask. Here’s what she said: There’s a new feeding protocol coming down the line called “Cue feeding” where if the baby’s showing signs of wanting to eat, you give them a bottle. If they don’t show signs of that, then you go to tube. That makes sense. If you shove a bottle down a kid’s throat when he’s not hungry that teached him to never take a bottle ever again. Anyway, I was totally fine after I understood everything and I apologized the nurse for being so on edge that morning. It all worked out. Having Braxton there helped, too :) Before I left, the pediatrician called back and said that in the consultation with Trevor’s doctor and the neonatologist at Primary’s, they decided that he needs one more week in the nursery at Alta View and then they will asses everything again and see about the possibility of him going home with an NG tube. So we shall see!

The whole thing was just a huge learning experience! I realized that I can’t be timid about about any of this and if there’s something that I don’t understand or am not comfortable with, then I’ve GOT to speak up. It’s hard to do all this along while Braxton’s at school or work, but I’ve got to because Trev needs me! I’m his mom and that comes with all this. And I’m ok with that, because I’d do ANYTHING for him :) A bit of good news to end on: He gained 2 oz. in a day! Went from 5 lbs. 5 oz to 5 lbs. 7 oz.! Hopefully he can keep it on this time :)