After Sage was born the NICU nurses put him under the warmer and cleaned him up. Mike was able to hold him for a few minutes, I got to hold him for a few minutes, and then the NICU nurses took him down to the NICU. Mike went with him and I was left alone in my room again (well the doctor and nurses were cleaning up but they don’t count and my BFF headed home). When Mike came back he had the head nurse from the NICU with him. She talked to Mike rather than to both of us and even with all the meds I was on, I still recognized it and was frustrated.
|Sage Orion born 6/16 at 35 weeks weighing 6 lbs and 3 oz|
So Sage was having difficulty breathing, and it was as if his skin on his ribs was lying right on the ribs because he hadn’t plumped up. He was breathing rapidly and the amount of oxygen in his blood (his O2 saturation) was lower than 100% (and varied a lot). He also had a sacral dimple (where the skin on the spine may actually be fused to the spine – it looks like a dimple) directly above his anus. In a small percentage of cases that’s an indicator of spina bifida (but he had use of his legs so they weren’t worried about that) and they were going to do an ultrasound to make sure they weren’t fused. As she’s talking about all this I could feel my eyes welling up with tears. This is not fair, my brain said. This poor little boy.
“I want to see him.” I told her.
She looked down at my legs (which were now not functioning because the extra epi had kicked in RIGHT after he was born). “Well once you can walk you can come down to the NICU whenever you want to. Except between 6 and 8 we’re closed for shift change.”
I’m pretty sure she got the Eyebrows Raised You Can Go F Yourself look when she said I could come down once I could walk. “No, now,” I responded. “On my way to my room I would like to be wheeled down there so I could see him.” I looked down at my gurney. “If I can fit.” Research says he needs to be held and cuddled ASAP, my brain kept saying as if a record stuck in a groove.
|Sage in his "house" 6/16|
“Yes ma’am,” she nodded and left. She instructed the person driving my bus (or gurney) to stop in the NICU before going to my room. We wheeled through a few doors, down some halls, and we were in a large open room separated into smaller areas with curtains. Babies in isoletes (those little “house” beds with the covered holes on the sides) lived in each of the makeshift rooms. Some of the babies had signs with their names, stuffed animals, banners, and all sorts of decorations. Some were smaller than my hand. And all of them beeped.
Our NICU was set up so that each nurse had two babies to care for during their 12-hour shift. Amy was Sage’s first nurse friend right after he was born (and she was his nurse again on Saturday evening). She opened the arm holes on the isolete so that I could touch his face while she answered my deliriously tired questions (that I don’t remember the answers to at this point). I do remember that she said that I could come down and see him whenever I wanted (aside from shift change), and I told her I would be back when I woke up. Then they wheeled me up to my room. And I couldn’t sleep. Mike slept like crap on the pull out couch. Neither of us fell asleep until after 4 a.m. because we were too jacked up on adrenaline.
I woke up at 7 when my nurse came in to introduce herself and take my vitals (and offer me pain pills). She helped me get up and walk to the restroom and took out my catheter. Nutrition brought me breakfast and I ate like I hadn’t eaten in a day (oh hey, I hadn’t eaten since noon Friday). I wanted ice water very badly, so I got up (Mike was still sleeping) and walked slowly down to the nurse’s station. I was not about to lay in bed and call the nurses station for jack shit – I was getting up and walking so that I could walk my own happy ass down to the NICU whenever I wanted. I was not about to have any recovery time lapse or have to ask anyone to wheel me down there.
The nurse at the nurse’s station looked at my socks, which were yellow and had grippys on them – they put them on me right after I got my epi. “Are you ok?” she asked me. I glanced down at my socks. “Huh?” Apparently my socks had something to do with this conversation. “Yellow socks mean you’re a fall risk. You’re not supposed to walk around by yourself in yellow socks.” “But I am,” I responded. “Can I take the socks off then? I brought my own. And I want ice chips. Please.” She took out a blue pair of grippy socks and we changed my socks (and no I wasn’t allowed to wear my own). And then she got me some ice. Apparently the hospital can get in trouble if there’s some crazy lady in yellow socks walking around unassisted. Note to self. Never wear bright yellow socks to a hospital.
Mike got up and after I washed my face and brushed my teeth he wheeled me down to the NICU – I started off walking and then I decided that maybe, just maybe I’d like to sit thank you. Mona was Sage’s nurse that morning. She had 30 years NICU experience and answered any and all questions we had. First she told us we had to “gown and glove” (put on a plastic gown and gloves) until Sage’s MRSA test came back negative. Parents who were breast feeding or doing kangaroo care (half nakey parent with half nakey child on their chest) could not gown and glove though, so I told her to take him out of the isolete because I was going to get comfy and kick back kanga-style with my honey bunny. Mike went home to get Silas (who was going to stay with my BFF and her two littles for a bit since he couldn’t come down to the NICU with us) and to grab some stuff from the house for us. Mona, when she wasn’t working with her other babe or doing paperwork on her computer, was educating me about NICU life and preemies in general. I learned what each of his leads were for (heart beat, respiration, O2 sat, and temperature), how they fed him through his feeding tube (which went up his nose down to his belly and was teeny tiny), and why his IV was in his poor little head. Apparently they start with the top of the hand for the IV, but Sage said F that and ripped it out. Next spot is the bottom of the foot. Re-moved by my little fighting preemie. The next (and usually last) place they’ll stick the IV is in the scalp and that’s where they had to do his because he couldn’t reach it. He had a nasal canula for oxygen and he’d already ripped the canula and the feeding tube out more times than she could count, so she’d had to tape them to his face. Poor kid looked pretty Frankenstein-ish, but knowing what they were all for and how they helped him made me less anxious about all the wires and the beeping.
|Daddy and the Beeping Baby|
Oh the beeping. Each baby has four leads which beep. There were six isoletes in an area and there were at least 40 “rooms” (numbered on the ceiling), so there was a lot of beeping. And the beeping gets angry if the numbers (O2 sat or breaths especially) go below certain levels. Initially the angry beeping freaks you out, especially if you’ve watched medical drama shows (“OMG my kid’s coding!”), but that wasn’t the case at all. The machines can be set to get angry when the numbers go below a certain level, and usually Sage’s O2 sat would set it off. Eventually throughout Saturday (he was born early Saturday morning) it stabilized and he was able to have his canula removed Saturday night. Saturday after shift change I tried to feed him a bottle (rather than through the feeding tube) and he didn’t latch on to the bottle or the breast, which I was kind of bummed about. You can’t go home on a feeding tube dude, I wanted to tell him. Amy said she would keep trying at the next two feedings (the NICU puts them on a 2-5-8-11 feeding schedule).
|Scalp IV came out Sunday at 8!|
Sunday morning when I went down to the NICU Nick was his nurse, and he was awesome (not that all the nurses weren’t). Mike and I sat down there and talked to him for a good long while about all sorts of stuff. When it came to be 11 a.m., Nick handed me a nursette (little formula bottle with a disposable nipple), removed the feeding tube, and told me to feed him. My eyes teared up as he took the nipple in his little mouth and started to suck on it. Another milestone reached – that much closer to going home. Amy had apparently worked with him the night before to get him sucking. The MRSA test came back negative that afternoon, so we could hold Sage without gowning and gloving and turning into plastic heaters (if you’ve never worn those gowns…don’t…ugh they’re like saunas). Nick told us that we should definitely come back right after shift change because we’d be excited to see what happened. At 8:05 p.m. they removed the IV from his scalp – no more IV fluids for this boy. All the shit from around his face was gone – he was just a little boy with four little beeps (and chapped cheeks from where the tape had been). *Swoon*
On Monday I was discharged in the late afternoon. Sage’s nurses didn’t know if he’d go home Tuesday or Wednesday but they were pretty sure he was busting out of there soon. We spent Monday during the day holding and feeding him and relaxing in the room while he slept. It felt weird, like I should be doing something, almost like we were on some sort of vacation. Mike went home and got the portable DVD player and we watched Redbox movies between feedings and holdings. People brought me food (not that it was good food, but what can you expect). We rested because we knew that once he came home, it was on and there would be no off button.
Tuesday morning we woke up at home, excited about the prospect of bringing Sage home. We went to the hospital and Sage had been moved to Intermediate Care (IMC) which is for babies who need less support than NICU babies. One of the moms had been in the NICU for 3 months and was leaving that day. You could see she was both excited and nervous. Sage’s ultrasound (US) on his sacral dimple was scheduled for that morning, so after his pediatrician came by to check him out we went to US. His scans came back fine – no tethered skin to spine. Yes! (And we noted that his dimple was completely gone when he was five weeks born). The last hurdle for him to overcome before going home was the car seat test: he had to sit in his car seat (at least an hour after eating) and his beeps (which were set on ultra sensitive) couldn’t get angry or he’d fail and have to wait another 24 hours before they’d test him again. Rather than sit there on our hands and watch the clock, Mike and I went to Babies R Us and got the rest of what we needed (burp cloths, formula, etc.), hopeful that when we came back he’d have passed and be ready to go home. And…he passed!
|Proud parents on Father's Day|
Mike said that driving him home was the second scariest drive he’s ever done (the first was when he brought his first son home since he’d never driven with a newborn). Sage’s car seat was too big for him – we had to add extra padding just so that the straps would be taut. After adding chin padding to help his neck stay up and a preemie insert, he now fits in his car seat with no extra padding. But he hates those damned pads (called the Puppy Pals). Damn Puppy Pals make us cry every time (but then we fall asleep and forget about them).
|Something to smile about!|
We’ve been home for a little over five weeks now and our little preemie is a fighter, man. He got himself out of the NICU in four days, and is already trying to hold up his head. He’s amazing. He makes me proud every day. And big brother? He tolerates him. And helps sometimes. Mostly he ignores him because, well, Sage does still sleep a lot. While our NICU experience was not a typical one, I have to say that I give major support to families with babes in the NICU. And the staff are amazing. They made signs and decorations for Sage’s “room” and there are these volunteers (Threads of Love) who knit and sew blankets, hats, and booties preemie-sized out of the goodness of their hearts. And they’re the baby’s to keep. Every time I look at the airplane blanket (chosen by Amy because Silas loves airplanes and she thought it would help him to like Sage) and the knit green and white blanket we received, it makes me smile.
After a long post I’ll leave you with a cute song about the NICU written by a NICU dad. The “video” is just a picture with the song playing, but if you were ever a NICU parent “NICU at Night” will make you both smile and tear up.
Thanks for reading…
-Liz (and Mike and Silas and Sage)