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.


16 Responses to “Day in the life”

  1. Mo June 14, 2013 at 6:05 pm #

    You are so strong. I know you’ll get through this. And I hope the time flies by! (though I know it probably isn’t – but we can hope, right? ) Sending you lots of love.

    • Shelley June 14, 2013 at 8:35 pm #

      Thanks Mo – goes both ways. 🙂

  2. Theresa June 14, 2013 at 8:14 pm #

    No one could blame you at all for wanting the normal things. You’re doing amazingly. HUGS

  3. Kristin June 14, 2013 at 8:37 pm #

    Turtle is so very, very lucky to have such an amazing mum. I can’t wait to read of the days when you and Turtle get to go for walks in your neighborhood.

  4. Esperanza June 14, 2013 at 9:15 pm #

    Wow, that sounds really, fucking, hard. And I know you feel so much gratitude for your daughter, who is doing great, but that is still REALLY FUCKING HARD.

    I truly can’t imagine. You’re talking about being in the hospital until I’m done with this pregnancy and that feels forever away for ME, I can’t imagine how far away it feels for you. I’m so sorry you’re going through this.

    I hope you can work out the maternity leave stuff so that you can both be with your daughter and have the medical coverage you need. I’m guessing that is impossible but maybe something can be arranged? A girl can hope and dream…

  5. slese1014 June 14, 2013 at 10:21 pm #

    You are one lucky mom! Being able to stay with Turtle 24/7 is great. In my NICU, they can visit 24/7, but are not supposed to sleep at the bedside. Being a night nurse, I like to bend the rules and at times I’ve allowed parents to do so. The life of a NICU mom is amazingly challenging. You are doing a fabulous job…and yes, it’s always the pumping…I was an exclusive pumper with my daughter and my life revolved around that pump…I commend you on your strength and dedication.

    Here’s hoping Turtle can be what I refer to as portable (no wires, tubes or “accessories) soon!

  6. JustMe June 15, 2013 at 1:21 am #

    I’ve been thinking about you and wondering. Thank you for updating us. I cannot imagine all you are going through. You both must be so strong to be doing this for her 100%, because you are putting yourselves on hold for her. Which is exactly what she needs, but still so hard on you. You should be proud. I am amazed by the mental image of you holding her so delicately with the tubes and contraptions. I will send her positive thoughts to grow and be strong and healthy.

  7. Courtney June 15, 2013 at 2:32 am #

    I have been thinking about you every day for a long time, and always want to send an email, but don’t want to bother you. Seeing an update from you made my day. It sounds like you are doing well, despite the chaos going on around you both and Turtle. I’m sure it’s hectic, but it sounds like you all are making the best of it.

    I am cheering you all on, even if silently. Sending positive thoughts your way on a daily basis!

  8. Alicia June 15, 2013 at 6:17 am #

    Thanks for the update Shelley – I’ve been thinking about you guys and hoping that everything is ok. This post is so amazing – your emotion is so real and you paint such a heartfelt picture of all of it – the NICU, the room you’re in, little Turtle, your perseverance, your husband’s love. Wow. It really took my breath away.

    Oh Shelley – don’t beat yourself up if you can help it (but really, who can help it? Lack of sleep, insurance/money stress, crappy makeshift bed, hospital food, recovering from delivering your baby). Esperanza said it so well – this is fucking hard. Like way harder than most people will ever know. Your sadness and anxiety and whatever else are totally validated.

    You’re an AMAZING mama.

    And DH is an amazing daddy. I can feel his care and concern all these miles away. He’s worried about little Turtle and he’s worried about you. You guys are one hell of a team.

    I hope that your little family gets some cuddle time this weekend and that you all actually have an opportunity to celebrate and enjoy this very special Father’s Day all together. Thinking of you guys.

  9. jjiraffe June 15, 2013 at 6:50 am #

    I’ve been thinking about you a lot.

    This sounds like difficult work that also is incredibly fulfilling. I really am in awe of the way you and your husband are managing your daughter’s care. I can feel your fierce love for Turtle pulsing from my screen.

    Wishing you the best as you journey through this tough but rewarding time. (((Hugs)))

  10. Lisa June 15, 2013 at 4:35 pm #

    Stay strong Mama. I can’t even begin to imagine how hard it all is, but it sounds like you’re doing an amazing job. Turtle is so lucky to have you as a mother!

  11. Gina June 17, 2013 at 10:37 pm #

    Wow. Just wow. I can’t even begin to understand what you’re going through. This is so HARD. You’re doing an amazing job. Yes, while you are thankful for your beautiful baby, a wonderful husband, and awesome parents, you cannot deprive yourself of all the other feelings you’re experiencing. It is natural to feel sad, to see your baby in all sorts of tubes and not able to hold her and feed her all these other mothers get to do. Things they take for granted. Well, we know we can’t take anything for granted. I am so thankful that you have a great team with you and Turtle. The nurses sound amazing and I’m sure they understand how incredibly difficult this is for your family. Turtle is just amazing. She’s such a good strong girl. Hang in there, my friend. The road to going home will be hard and long, but you will get there. We will be here to cheer you on. Much hugs and love to you!

  12. Amanda E. Perrine (@amandaea129) June 18, 2013 at 10:47 pm #

    You are so very impressive. Turtle is one lucky little girl to have the parents she does.

  13. Nonsequiturchica June 19, 2013 at 12:37 pm #

    Wow. I can’t even begin to imagine how hard this is right now, but it sounds like you are making the best of it. Please don’t beat yourself up that you want “normal” things- everyone does.

  14. Kelly June 19, 2013 at 11:34 pm #

    Hi, I just found your blog today through a suggestion from WP and just read this post and just wanted to offer a kind word or two…I just think it’s absolutely amazing what you are doing for your baby. Exclusively pumping is HARD and you are incredible for sticking with it. I had a friend who had a preemie and EP’d but gave up after a few weeks because the lifestyle of living at the hospital was rough (as I’m sure you can agree). I EP because of latch issues and that’s hard enough as it is. I cannot imagine what you are going through with having your little one still in the hospital. But you are an AWESOME mommy. Don’t ever tell yourself differently. Even if you do eventually give up on the pumping. If you ever need support, there’s lots of it out there! Best of luck to you and your turtle. I hope she goes “wi-fi” very soon!

  15. Amy June 20, 2013 at 4:34 pm #

    This is such a grueling journey, and there is no good or right way to do it, you just have to do it, and you ARE. You are doing absolutely as well as anyone could imagine. I hope that the coming months go exceedingly well and go by quickly, so you can have all these normal things as soon as possible.

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