Note: I wrote this a while ago but never finished it. A few things have changed but I still felt it worth posting.
I have spent the past eight (now eighteen) days living full time at Turtle’s hospital bedside, in a space of maybe 50 square feet. I leave for maybe an hour each day (excluding Saturdays when we’ll try to get a few hours at home with the pets), but only if there’s a family member to be with her while I’m gone. And even then, it’s hard.
The hospital has already become my home and I’m settling into as much of a routine as you can in a place with zero privacy and constant interruptions. In the morning, DH leaves for work early and I usually wake up with him. I have to get dressed, pump, and eat (not always in that order), and be presentable in time for the surgical rounds, which usually take place between 8 and 9. The rest of the morning is spent tending to Turtle, talking to nurses, pumping again, and sometimes straightening my hair.
I try to hold her for at least an hour before lunch and love to fall asleep with her in my arms. Often that is the only time I get to hold her in the day because it’s such a production, between the NG tube connected to suction in the wall and the IV lines to get her out of her crib and comfortable in my arms. How I long for a baby without a million things attached to her! That I can just pick up and squeeze and snuggle without worrying about tugging at tubes and lines.
I’m allowed two free meals a day since I’m pumping so after my free lunch, the afternoon goes by quickly in a blur of again, tending to her (calming her, swaddling her, changing her), interacting with the nurses as they come in to take vitals every few hours, and sometimes getting some reading done or making some calls. And of course, pumping. In the late afternoon my parents arrive with clean laundry, dinner, and anything else I’ve asked them to bring from The Outside. Our small space gets even smaller when they’re here but I truly couldn’t do this without them.
DH comes back around 5 and then we all hang out for a bit. Sometimes we go eat early while my parents stay with her. There is a lovely garden here (that they are sadly trying to tear down!) that we go to as a respite from the clinical setting and to eat dinner. After my parents leave and we’ve eaten, we spend the evening hours admiring Turtle, caring for her, talking with each other, greeting the night nurse, and sometimes watching something on Netflix. Oh, and pumping. Always the pumping.
We don’t have a set bedtime, just depends on how tired we are and what’s going on with her. Turtle does a great job with sleeping through the night (remember, she doesn’t eat), really only fussing when her diaper is wet. We’ve only had a couple instances of nighttime fussiness that’ve been hard to control. I try to get up with her as much as possible to give DH a chance to rest before work but sometimes he can’t help but wake up too. It’s nice knowing too that nurses are coming in and out to check on her and they help keep her diapers changed, swaddles tight and binkies in as well.
The next day, it all starts again.
We’re quickly learning the ways and politics of the floor. Your nurse is your lifeline and it’s important to get her in your corner. We’ve had some amazing nurses that have taken pity on us and pulled some strings for us. One of our night nurses arranged for us to get two sleeper chairs by Turtle’s bedside, even though you’re technically only allowed one and only one parents is supposed to stay the night. She understood how much we both desperately wanted to be with our newborn and together and her rationale was, what’s best for mom and dad is best for the baby. Ever since that night, no one has said anything about our both sleeping here. We’re lucky too to have the window spot in the room, which has way more space than the door spot (yes, they’re double rooms for families with recovering babies – not easy). Last night’s nurse helped us narrowly avoid getting a new roommate, so we’re forever indebted to her too.
(We have since been moved to a private room after having three different roommates over four days including a pair of particularly disrespectful parents with a screaming baby that kind of made us lose our shit. The private room is completely amazing but we have no guarantee of staying in it as it is reserved for patients with infections. For now, the nurses understand that we’re here so much longer than most everyone else and have promised to try to keep us in this space.)
We’ve also learned how important it is to take an active role in Turtle’s care, and that we can effect some of the decisions made. We are the only constant between all the different nurses coming on and off their shifts, and only we know what has been told to us by surgeons that doesn’t always get communicated back to the nurses. DH kind of showed me the ropes with this by paying amazing attention to detail and asking a ton of questions right off the bat. Now that he’s back at work he fully expects me to be his eyes and ears around here and stay on top of everything, which was a little tough at first, especially when I was still focused on my own recovery, but I learned quickly and now I’m pretty fastidious about all the details and keep my own detailed notes.
It’s hard to really put into words all the emotions I’m feeling, which is why I haven’t blogged much because it’s overwhelming to parse it all out (and beyond that I feel like I have so little time). There are so many moments of joy and pride in my daughter, in watching my husband be a father. I feel unbelievably lucky a lot of the time. But I also feel a deep sadness in having to be here, especially for as long as we do (if we get home by October, that would be amazing). I feel stressed, knowing she probably won’t get out of here before my maternity leave is over and what the hell am I going to do about that? I don’t feel at this moment that I can return to work with my baby in the hospital. I don’t think it’s right that I should have to but financially? I’m not sure how we will make it work and besides, she’s on my insurance because it’s more comprehensive and this little hospital jaunt is probably costing many several hundred thousand dollars.
My mama bear instincts are in full gear and I am filled with anxiety when certain people touch my child, especially student nurses, people in training, people I don’t know, and even some people I do. DH felt this feeling much earlier than I did and I couldn’t quite understand it but now I do. I miss my dog, my bed, my kitchen, my having doors that lock. I dream of taking Turtle for a walk in our neighborhood with the dog, having skin to skin time without a central line and a gastronomy tube between us, breastfeeding her, bathing her. I long so much for these “normal” things.
And then I beat myself up because I’m so damn lucky to have her at all and because she’s doing so well and is so very loved and special. I have days where I can’t stop crying and a depression takes hold. I’m irritable and I just want to be left alone with my baby. Thankfully these days are not every day.
So that’s where I’m at. Full time with my baby, sleeping and pumping when I can, loving her more every day, and dreaming of the day she finally comes home for good.