day 5 ~ breakdown

Last night they started threatening to discharge me today.

The doctors had been worried about my severely low blood levels and urged another transfusion to give me some energy and help with healing. My pressure was dangerously low and my heart rate high enough to concern them that my heart was working too hard. After a few days of not feeling well enough — i.e., lightheaded with clearly insufficient circulation — I reluctantly agreed and they gave me two fresh units in the middle of the night, between 10pm-2am.

I finally woke up feeling a little better, getting around, doing all the things you need to do to go home.

Except I didn’t want to go home. Yes, I want to be home. But I don’t want to leave this place.

I called the social worker assigned to parents of NICU babies. She knew our situation. She knew how hard it would be once I was discharged. We live an hour away, we have a toddler, I was struggling to recover, etc. She would do what she could.

There are so few good options though. Local housing and lodging is really limited. Other options might be fine for a partner, but not a family. Friends who had offered up housing also didn’t have ideal situations, though we appreciated the offer. There was a slight possibility of boarding an extra night after being discharged, but it was completely dependent on whether they needed the space. My best bet was to delay discharge to buy some time.

This morning at 6am the perky doctor making rounds said again they were leaning towards discharge. How did I feel? In pain, exhausted, low energy, tremendously sad. I’m not ready to go home, I told her. You’re doing great, she said, you really are, that’s all normal.

As soon as she shut the door, hot tears streamed down my face. I’d been avoiding this realization — i.e., that we would be going home without our baby. I started planning my morning visit to the NICU. I had to wait until after the shift change, so I tried but was unable to sleep some more. Then the morning check-ins began, and an hour had passed. I hadn’t eaten yet. I had to pump. I had to check local hotels for availability.

I was hoping to make it to the NICU in time for Baby Z’s morning feeding, since I could take her out and she’d be awake and I could try her at the breast (even though she can’t nurse yet). But by the time I made it down to there, she was asleep. Her nurse said she had been “wide awake” all morning. And I missed it. Those rare moments of alertness and shared consciousness are so precious. I was crushed.

And I couldn’t help it. I just started sobbing. She was fine, she was peaceful, she was sleeping. But I was falling apart. I had no idea how I was going to leave her there. I needed to spend as much time with her as I could.

This particular nurse was so kind, so compassionate. She pulled up a chair for me, took Z out and unwrapped her, laid her down on my bare chest, and handed me some tissues. I know, she said. It’s so hard.

I laid there with her for over two hours, just letting her sleep on me. Soon it was time for her next feeding. By that point, Mac and shown up with Jaye, just in time to see her IV removed (hopefully for good). I spent some time with them but they went home early, to give Jaye a real nap and me more time with Z. I spent much of the afternoon with Z, soaking her in, giving her what I could.

I was discharged this afternoon, but they let me stay the night, on the condition that they may at any point need the room for a laboring mom. The social worker prioritized my case and pushed for the extra night, but there was no reason not to discharge me. Now when I hear a flurry of activity in the hall I just hope they’re not coming to give me an hour’s notice that I have to go.

I’m writing this in between visits at the NICU, to give Z a chance to rest and me a chance to eat, drink and pump. Still waiting for my milk to come in. Processing the plummeting hormones in my body. And now forced to face that tomorrow, somehow and I don’t know how, I must leave this place without our daughter.


~ by luna on September 7, 2011.

28 Responses to “day 5 ~ breakdown”

  1. Holding you so tight in my heart. I am so sorry for all the tears shed and I hope you can find a situation that allows you to rest and see baby Z and the rest of your family as much as possible.

  2. It is so hard to leave her there, i know. But just know that eventually she will come home. You know all to well the stories of families less fortunate than you. She is where she needs to be and she knows you love her. I know it still hurts like hell, but you will push through this.

  3. Love to all four of you. So hard to leave without your baby girl – I hope you get to stay in the hospital and near her as long as possible.
    Trust you will get to wrap her in your arms and take her her home and that moment will be a beautiful one

  4. Oh, Luna. I am hoping for Z to gain weight and strength quickly, so you can all go home.

  5. I had totally forgotten about the pain of having missed a NICU baby’s limited awake time. There is so much awake time to come very soon, times when you’ll wonder if this baby ever sleeps, but I know how every moment seems so precious right now.

    Know that these hormones are magnifying everything right now. Not that your feelings aren’t real and valid, just that the bad stuff isn’t as bad as it feels.

    Love to you.

  6. That must be so hard. I’m so glad you got to spend that time with her today and I hope Baby Z. is ready to come home as soon as possible. Hugs.

  7. Thank you for sharing. I’m following your words with hope in my heart and happy tears in my eyes (at work, nonetheless). I hope for nothing more than you are able to take Ms. Z home with you very soon.

  8. i love you. you’re doing great. i can’t imagine how difficult it is, but i’m so grateful that you have some staff on your side to smooth some of the roughness & to fight for you…even if its just for a few more hours.

  9. It’s good that you were able to spend a little time with her now. Love you.

  10. Oh, I can only try to imagine how difficult this must be. Hang in there and take care.

  11. Luna, I know this is so hard. I have some idea of what you’re experiencing. My preemie son was whisked away from me at birth, I didn’t see him for a couple of hours, then he was transferred to a NICU one hour away where I still couldn’t hold him for two days or start breastfeeding for two weeks! Fortunately, I was able to stay at a Ronald MacDonald House near the hospital while my husband commuted to work every day . . . for almost five months. We were grateful to RMH and all of the wonderful people we met along the way who supported us in our crucial time of need, but we became quickly isolated from family and friends and didn’t really bond with our son until he finally came home and was fully in our care.

    Before he was born, I had the typical new mother visions of how life would be, but reality was very different. Surprisingly, I wouldn’t change a thing. Our tough times have strengthen both of us and our marriage, and our son has not suffered from his early ordeal. He is strong, independent, brave and sensitive, and most of all, he knows that his parents love him more than anything. Luna, your precious Baby Z knows who her mama is and she will be okay!!! Take care of yourself. Lots of love to you while you sort out your *temporary* living situation. xx

  12. Oh Luna. My heart aches for you. (((hugs)))

  13. I remember 4 times getting on the plane and flying out of Guatemala without my baby, its was the most horrible horrible thing and so wrong. No wonder I never leave her now. I’m so sorry you have to leave the hospital, I mean its better then you yourself doing so poorly that you had to stay but then you would be there as well. I hope you can find something close by so at lest you can hang out during the day and see her when allowed, (that would drive me crazy!) Do they still predict she will be discharged at 2 weeks? take care.

  14. You are doing such an amazing job of handling all that has come your way, Luna. I wish there was more we could all do for you — just know you stay in my thoughts and I send recovery vibes to you and strengthening/growing thoughts to baby Z. Love to you!

  15. Oh Luna,
    I’m so sorry this has been so hard. I hope you are able to find someplace near by to stay where you can be with Z on a regular basis. I’m so glad that nurse let you have her out and sleeping on your chest for so long. I’m sure that did both of you so much good. Hugs to you and to your family.

  16. Oh Luna…yes it is very tough to not bring baby home. I hope her stay in the NICU is not too long. The toughest part was the constant going back and forth from home to hospital for me. Keeping this up for few weeks + catering to the demands of a very confused 2 year old must leave Mac and you exhausted.
    I hope you get some rest when baby Z is asleep.

  17. It is simply torture to leave the hospital without your baby. I remember the feeling better than I want to and I remember being grateful to the NICU nurse, herself a mother to a former NICU preemie, who supported me when I literally fell apart in the NICU before leaving. The hormones do amplify everything. I hope that this time will be very very very short. I know that you will be home with both of your girls before you know it but that time can’t possibly come soon enough.

  18. I know how hard it was to leave for a few hours, let alone the night. And I only had to do it a week. I can’t imagine longer, I really can’t. The only assvice I can send through the computer is to remember that: She won’t remember this. You will, obviously, you will take this time with you to the grave, but she won’t. She will come to know you as her one and only, her mom, and she will bond with her sister and father, and this will become a distant blurry memory. Which helps you not at all right now, I realize. What would help is if I could give you a room across the street.

    Could you sorta wean yourself away? Maybe you alone could stay at one these options for a few days, and then find someplace farther out a few days later for everyone? Until you build up some trust about the situation and the staff?

    I hope you find some peaceful resolution to this and I hope her stay is quick. Much love.

  19. Oh my God, Luna, I don’t know what to say… this just sounds all so gut wrenching. Hang in there. We are all pulling for you and Baby Z and your family. Huge hugs….

  20. Oh, this post just tore at my heart. I can only imagine what you’re going through. Sending you many hugs and hoping Baby Z is able to come home soon.

  21. I can only begin to imagine how hard it must be for you to have to leave Baby Z. Hoping as hard as I can that her time in the NICU will be short, and that she will be home with you all very soon (and, of course, wishing you a continuing recovery from the birth: I hope that the transfusion made a difference to your energy levels). xx

  22. I can’t imagine what you’re going through right now, but you will make it. After the tears, be resolved that you will find a place to be closer to her. She is never without you, you know, when you see her, tell her that even though you aren’t right next to her, that you are with her. How long do they think she will be in intensive care?

  23. I know it is best for little Z but I just want to march in there, shout “F U! Luna is taking her home!” and march out with her.

    I still think they are not doing the best they can for a newborn – especially a preemie! – not to have it set up so mothers and families can stay near. It is hard to believe that we still live in the dark ages.

    I am so sorry Luna. Keep working on the milk. When the baby can latch I bet that will help. I ran into a woman once whose milk didn’t come in enough to not supplement for almost 5 months. you will be nursing exclusively soon. I hope very, very soon.

    May baby Z come home to you in just a few more days. I am wishing you all peace.

    ok. . . kind of funny to wish you peace when I am dropping the f-bomb in my head. Dang I wish there was something you (or I) could do to change the situation.

  24. I’m so sorry, luna—I hope she gains weight at an astonishing rate, and that she isn’t in the hospital too much longer. How hard it must be to leave without her. I know we’re too far away to be any housing help, but if there’s anything—anything—a SoCal Catholic lady can do for you, name it.

  25. […] afternoon we were getting ready to leave the hospital. I’d been awaiting that moment with a sort of dread. Yet Baby Z had a good report, I got to spend some time with Jaye playing in the courtyard, […]

  26. I can remember visitng a friend a few days after she gave birth to a 27-weeker. She took us down the hall to the NICU to see the baby, limping along the way. I asked her if she was OK & she winked at me & said, “I don’t want them to think I’m doing TOO well or they’ll discharge me sooner.” She’s now a parent advocate who helps other NICU parents at the same hospital. (((HUGS)))

  27. […] pain, but hormones got the better of me. The end of that first week found me in an undeniable breakdown, as I was discharged while our daughter remained in the […]

  28. […] sick, the kind you can only feel resigned to feel, because there is no other option. I remembered breaking down in the hospital when they insisted on my discharge, because I needed to be close to her. Reading some of those old […]

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