two weeks

That last post was a late night stream of consciousness, got to get it out and “this is how it is” kind of post. I hit publish before I even looked it over. When I read it the next day, along with your comments, I got a lump in my throat. Those of you who have been there, those of you who know, who remember, you shared your own moments that had me nodding with you. For the rest of you I sketched just a slice of life in the NICU, as I have experienced it.

Two weeks since our daughter was born, my experience now is different than when I was still a patient, roaming the halls in my socks at all times of day and night. When I was discharged a week ago, we moved in with my aunt and uncle who live closer to San Francisco than we do. They made us feel at home, fed us wonderful (iron-rich) dinners, and insisted we stay even when we thought we might have overstayed our welcome (toddler alarm clock, anyone?). Not only did they take such good care of us, they also provided emotional support that most could not. See, they’ve been there. Their son, my closest cousin, spent two months in the very same NICU when he was born at 29 weeks, 42 years ago (just seven months after I was born). They knew what we were facing, and they knew how hard it was with another little one at home who needed us.

We finally came home yesterday. I hadn’t been home in two whole weeks. While it was convenient and wonderful to be surrounded by such love and support, it felt really good to be home. Of course I hadn’t been here since being rolled out on a stretcher two weeks ago. When she was still inside.

Now I am well aware that we are still just 3/4 here. My heart is split, here at home, and laying in a tiny crib in the NICU about an hour away.

Today Baby Z is two weeks old. When we were initially told she would probably be in the NICU for about 2-3 weeks, of course we imagined her being home by now. A gestational age of 36 weeks is a common age to send babies home, though some remain another month, until their due dates. While she is doing reasonably well, unfortunately there is still no sign of when she will be discharged. They simply can’t know how long it will take her to develop the skills and the muscles she needs for 8 feedings a day. She’s making some progress, but she’s just not there yet, not even close.

We’ve been tracking Baby Z’s development every day, looking for the slightest signs of progress. We count how many ounces she can take by bottle or breast before tiring out, and we celebrate when she can get a full feed by mouth. We count her weight increase in grams every day, and get excited that she now weighs almost five pounds. We watch her monitors to be sure there are no respiratory incidents, which are often common during sleep and feeds. We hear the daily rounds and orders given by the doctors and nurse practitioners, who adjust Z’s care to her progress the day before. We listen for clues as to when she might be ready to come home. But there is nothing.

She is just not ready to come home yet.

On our last day with my aunt and uncle before coming home yesterday, I had a sobering reality check.Β  Mac and Jaye and I were at the breakfast table and my aunt was in the kitchen. We were talking about something at the end of September or early October, and I said “well she should be home by then.” My aunt stopped me and said something like, don’t say that, don’t think that way, don’t get your hopes up, don’t have expectations. “Say she ‘could’ be home by then. Say we hope she’s home by then.” And oh wow, the thought that she could be there until October, or longer, well I just got sick to my stomach. My eyes welled. I had to get up from the table, because I didn’t want Jaye to see me cry. I headed for the bathroom and my aunt stopped me in my tracks. She held out her arms and forced a big hug on me and just said “I’m sorry, honey, I know.” And I just sobbed. She encouraged me to let it out, said I had to let it go. And I did. I stood there a few long minutes and let her hug the tears out of me. Then I took some deep breaths and felt a little better.

She was right, really. I have had expectations that Z wouldn’t be there so long. I thought since she was doing so well otherwise, that she would be able to come home, if not by now then at least before another week passed by. Mac is even going back to work late next week, after taking three full weeks off. He hasn’t taken three weeks off, ever. Not for our wedding and honeymoon, not for much needed vacations, not for the birth of Jaye. Mac has been a superstar taking care of Jaye every day while I try to nurse Baby Z and pump and rest and recover. Yet I have no idea how we’ll manage daily visits to the NICU with our limited child care situation, if Z is not home by then. But I can’t even think about that.

Right now it’s day to day. Two weeks in, and we don’t know how much longer it will be. An end date would help.

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~ by luna on September 16, 2011.

18 Responses to “two weeks”

  1. The NICU truly is day to day, even moment to moment. And not knowing… That makes everything so much harder. The day that g was released we had no idea. The doctor had told us the day before that there was a possibility he could come home soon but she didn’t go so far as to define soon. That day we visited and then went home for lunch. Nobody said anything. About an hour after we left they called for us to come and pick him up. I remember that, although, as you know, I had been praying for that moment since his birth, I felt totally unprepared.

    Things can change very quickly and I hope that they will and that you will be pleasantly surprised very soon.

  2. Hoping there is a light bulb, where she suddenly gets eating. Her body cooperates with her brain and she is home with you. And I hope until that happens, you all find a way to get through it with a peaceful heart.

  3. With N, she suddenly started figuring out the swallow reflux when she hit 35 weeks (and a few days). It took her a few more days to really get the hang of it, but I distinctly remember the days of watching to see her take 10 ml, 11 ml, slowly inching upward and sometimes sliding back. She was born at 33w6d and didn’t need supplemental O2 after the first day either. I hope Z gets it soon and can come home to you all soon.

  4. Hang in there. I’ve seen babies that were barely able to make it through one feed turn around 3 hours later and take the entire feed in like 10 minutes. Sometimes they progress gradually and sometimes it’s like they just “wake up” one day and decide that they need to eat. I’ll be hoping baby Z does and soon. I will agree with your aunts point though not to have a specific date in mind. I’m thinking of you all and sending many good thoughts. Hugs to you.

  5. andmy tears come,nt that Ihave been where you are but I remember the whole Guatemala thing even when I was living there, you would think maybe by halloween, then I was hopefully by Christmas, not allthe way until my birthday, then geez my birthday would have been great. Its hard to not to hope, if we just new the date it would be easierto accept at time. So sorry you are home without her but glad she’s in such good care.

  6. Oh man 😦 So difficult. Sending the “get healthy and hungry vibes “to baby Z!

  7. It is so hard…sending feeding vibes to baby Z and much love to all of you.

  8. Praying for you guys. So glad you have your Aunt as someone so close who has been there.

  9. I am so glad you have your aunt, your haven, someone who has Been There.

    Saying my prayers for you, M, J and Z.

    XO

  10. For me, it was the last days in the NICU that were the hardest. I managed ok until they got to term. Once they hit term, every day was harder than the last when I’d get up to leave their bedside. Personally, experiencing the side of being told several times they’d come home only for it to not happen for some reason, I wish they hadn’t said until the day the were READY to sign the papers for discharge. It was heartbreaking to go down there to pick them up to go home only to be told they had something happen at the last minute.

    Many hugs to you. I am so glad you had your aunt there for support.

  11. Youve never been far from my thoughts over the past 2 weeks — sending you lots of love

  12. I know that this is unbearably hard. Baby Z is right where she should be, for now, in the excellent care of the team of professionals in the NICU. Allow her to have this time, to focus on nothing but the rudimentary building blocks of life as a newborn. You will have a lifetime with her once she is strong enough to be home and because of her strength mothering her at home will be easier. This time apart will fade into the rear view mirror of your life.

    Give yourselves both this time…for you to heal and for her to grow, grow, grow, under the watchful eyes of those to whom you’ve entrusted her care. Hold on, mama, just hold on…string each day together, one after the other, and she WILL be home and you can get on to the business of being a reunited family.

  13. So glad that your aunt and uncle could provide support in so many different ways.

    How amazing that Z inhabits the same NICU that your cousin did so many years ago.

    Day by day, moment by moment, for all of you.

  14. For what it’s worth, 21 months out and I have forgetten about our NICU time. Perhaps it’s a defence mechanism.

    My therapist (at the time) reminded me that while I might remember this time forever (or not), thankfully, my child would not remember a thing. It really helped ease my mind, especially on those days when I couldn’t visit her.

    It sounds like your daughter is getting the best care possible. Remember to look after yourself.

    I wish you and your family all the best. Please contact me if I can be of any comfort or support.

  15. Love to you. It’s really hard. No one handles it exactly well, but you’re handling it…more-than-well-enough.

  16. […] should know better now than to say “should,” though I still can’t help […]

  17. […] It was sobering, walking out those doors without her every evening. We were relieved when Baby Z was moved to an open air crib and able to keep warm. Yet while she was reaching certain milestones, her progress was otherwise slow. There was no indication when she might be able to come home. It was undeniably taking a toll. […]

  18. […] Some days I grew so discouraged I doubted when she would ever come home. I knew she would — by no means was she as sick as some babies there — it was just a matter of time. But I was so physically pained from being separated from her that I thought my heart would burst every time I had to leave her side. Every night as I fell asleep in tears or out of sheer exhaustion, I thought of our new daughter alone in her plastic crib too many miles away. I knew she was where she needed to be, but I wanted her home in my arms. Those three weeks were no doubt the longest of my life, and they took a toll. […]

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