Archive | June, 2013

Catch up

27 Jun

The past two weeks have been one thing after another. Just when we’re starting to settle in to a routine here at the hospital and finding our sea legs, I wake up with searing chest pain after I go to sleep on my birthday, unable to catch my breath.

We left Turtle alone with the nurses for the first time ever while security rushed me over in a wheelchair  to the Brigham ER. Six hours later, one chest X-ray, one CT scan, a heart ultrasound, an EKG, after giving blood and urine, they ruled out preeclampsia complications and an embolism. They gave me morphine for the pain, which was wonderful, until it wore off and the pain was still there. It ultimately lasted about nine hours. We got back “home” to Children’s, promptly got colds, and hoped it would never happen again. The ER attending clearly thought it was just a panic attack because he told me to just “breathe through it” if it happened again.

It did, on Father’s Day around noon. I was completely incapacitated, just lying on my bed here in the hospital, in the worst pain I could imagine. We didn’t know what to do. Another trip to the ER? We couldn’t see what they would do differently. The pain lasted about twelve hours this time. My parents suspected it was my gallbladder, so I got myself a new PCP at Beth Israel and saw a resident there the next day.

Two days later, a gallbladder ultrasound confirmed that there were stones present. I scheduled an appointment with a surgeon for nine days later and hoped I’d make it. But of course I didn’t. On Friday night I had another attack and this time I couldn’t take the pain. So at 3 am, DH put me in a wheelchair and rolled me to the BI ER. There we waited with people coughing all around us while they gave me morphine (sweet relief!) and ordered another ultrasound.

They ended up admitting me to the hospital on Saturday afternoon and long story short, I had my gallbladder removed laproscopically on Tuesday morning around 4 am (after being an “add on” to the surgery schedule all day and continually being bumped). I spent three and a half miserable nights away from my baby girl, most of the time just sitting around, starving “just in case” I needed to go into surgery, trying desperately to pump and watching my supply dwindle to next to nothing (where it remains for now). More than a few meltdowns were had. I fully acknowledged my newfound fear of dying, now that I have a baby.

But. I was discharged 11 hours after I went into surgery and taken right back to Children’s to see my girl. I missed her so much! I missed just being in this hospital room with her all day. I missed all our favorite nurses who have become our friends. As much as I’ve hated being here, I suddenly saw it in a new, more appreciative light. We may not be home, but at least we can be at the hospital all together.

Everyone keeps telling me how strong I am. I still don’t understand it. I really feel like I’m just getting by and doing what I absolutely have to do, they only things I can do.

ps. One quick point of clarification: Turtle is not in the NICU. She cleared the NICU after two days. She’s very stable and just needs to keep growing on TPN. We’re on a surgical floor for infants and toddlers. She will be back in the NICU for a few days after her next surgery, which is scheduled for four weeks from tomorrow.


Day in the life

14 Jun

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.

The now

2 Jun

Right now, we’re sitting in our shared hospital room, both absorbed in our phones as we listen to our roommate’s family prepare to be discharged today. He was born only four days before Turtle and today he goes home.

Right now I’m still trying to absorb everything that’s happening to me, to my daughter, to my husband, to us. I’m still trying not to feel the urge to cry every time I think about the fact that she needs another surgery in seven weeks. And that there’s a chance her bowel obstructions will be so bad that she’ll need even a third procedure.

Right now I’m trying to find my way back to thankfulness and positivity, as DH and I vowed to do a few days ago. But it’s hard. To not feel sorry for us and envious of others. To not wish more than anything for my daughter not to have a non-functioning g-tube coming out of her stomach that caused her to vomit bile everywhere yesterday while DH and I tried to take a rare break from the hospital at home. And caused her to get her NG tube threaded back through her nose into her stomach.

To not wish she didn’t need the central line going straight into the center of her tiny chest, keeping her alive on liquid nutrition instead of the breastmilk I struggle to pump 8 times per day. It’s hard to ignore the urge to feed her, to hold her without the tubes and wires, to take her out of this place and let it be breeze and sunshine that furrow her brow, not the flicker of florescent light over her face or the annoyance of yet another group of vital signs being taken.

Right now I watch my husband watch over his daughter, paying meticulous attention to every aspect of her care, making mental notes for tomorrow’s rounds, protecting and loving her so fiercely that even I who knows his heart better than any other have been taken aback.

I watch my parents do their best to support and protect me as I’m hurdled against my will down this terrifying path.

I watch my daughter take it all in stride and patience. Her chubby cheeks, her perfect lips, her bright gray eyes observing all in calm wonder.