In my mind, I tend to play what you could call the Reverse Pain Olympics.
When tiny Blaise was hospitalized with RSV, I struggled and struggled, partly because I was just a couple weeks postpartum and partly because, well, I had a sick baby in the hospital.
But then I would look around the pediatric floor at the other children with their tubes and wires and IV poles, at the other parents who'd been keeping bedside vigil for weeks or months, and I felt like I had no right to be sad. They had it so much worse than I did. It was silly for me to be so upset about something so relatively minor.
It was silly, and yet I couldn't stop crying.
A week into Blaise's eleven-day stay, when I'd been sobbing on and off for twelve hours, I told the nurses on the floor that I thought I needed some help. One of them walked me down to meet with a social worker. We got tons of great care during our stay at the children's hospital, but for me that social worker was the single most helpful person I saw during the visit.
I worked my way, puffy-faced and hoarse-voiced, through a box of tissues. She listened, then with firm kindness dismantled my game of Reverse Pain Olympics.
Not only was it okay for me to grieve, she said, it was necessary. If I didn't process my pain over having my baby's first weeks disrupted by illness, it would turn into trauma. Everyone else's relative amounts of pain had no effect on my situation: I felt the way I felt about it, and I had to give myself permission to work through those feelings.
Mentally, I turned the corner that night. We went home three days later. I continued processing, and very quickly Blaise's hospitalization came to feel like a minor event in my life.
I'd been right about the relative smallness of the pain, but the social worker was right too: I deserved to grieve what I lost, and letting myself do it was the healthy way to handle it.
For the second time in a row, we're not having the postpartum period I imagined. I've said this whole pregnancy that our main goal was to grow healthy babies and hopefully bring them home from the hospital right after birth. The first part of that, blessedly, happened. The second part did not.
As parents of premature babies, we have pretty much a best-case scenario. Our babies were born at 34 weeks, 3 days, which is barely premature. They were big for their gestational age. They'd had steroids and breathed on their own immediately, with APGARs of 8 and 9. We've had minimal struggles with digestion (Linus), temperature (Linus), and jaundice (both, but mostly Ambrose), all of which are now resolved. I'm making an overabundance of milk - the freezer at the NICU is already stocked - and the babies are progressing on feedings, which is all they need to do to come home. As a bonus, they both have great latches and the few times a day that they nurse, they do well.
Our NICU has two areas, the ICU side and the Special Care side. Linus and Ambrose spent less than 48 hours on the intensive side before being moved to Special Care. The ICU is dark and humming, full of very young or very sick babies, many of the isolettes covered 24 hours a day. In Special Care, we have windows. At just nine days old, our babies lie in the sunshine in open cribs. They are big and healthy and close to full-term.
By preemie-parent standards, I have nothing to complain about.
But when I walk in the hospital each day and ride the elevator up to the third floor to visit the NICU, I often see a family coming out of the mother-baby unit right across the hall. The mom is in a wheelchair holding her baby, the dad carries the carseat, an older sibling might clutch a bunch of balloons. They're going home together.
My throat feels chokey and my eyes burn, every time.
I wanted that to be me, bringing my sweet baby boys home, and instead I've spent the first nine nights since their birth away from them, with many nights to come. When I wake and pump in the night, I look at pictures of them on my iPad to help trigger letdown. What I want to do is sniff their necks and rub my cheek against their soft heads.
We're lucky enough to live very close to a hospital with a Level III NICU. It's a 12-minute trip from door to door. I go to see and nurse the babies two or three times a day, and when I walk into the hospital and head for the elevator, I think about how my reason for being there is a joyful one. That's probably not true for most of the people I pass on my way.
There are the Reverse Pain Olympics again. Be happy, they say! You're lucky! You have no right to feel sad!
Thank goodness for that social worker from last time, for her kindness and firmness. She is the voice in my head this time around, reminding me that grieving is a healthy thing, that the only way past my sadness is through it.
So sometimes when I leave the hospital I sob in the car and bang my fist on the steering wheel, angry and upset about what I've lost and what I'm still losing every day my little boys spend away from me. I'm crying right now as I write about it, crying about the fact that Linus and Ambrose are not still in utero where they belong, crying about my body's inability to make it all the way, crying because this is different from what we wanted it to be, and harder, and I deserve to be angry and upset about that.
The only way through it: to put my head down and cry.
We're doing everything we can to make this time bearable for our family, and I feel good about the choices we're making. I'm home most of the time, sleeping in my own bed and showering in my own bathroom. Bryan and I spend the afternoon feeding together with Ambrose and Linus at the hospital, and stay afterward for snuggling and parental down-time. We trade off the 9:00 feeding, so one of us is here to put Camilla and Blaise to bed every night, and we're keeping their day-to-day life as normal as possible.
I feel, most of the time, happy and optimistic. The worst part of our NICU stay is over. We are coping well. Our babies are healthy and growing and in beautiful shape. It will feel like no time before we bring them home and are thrown into the chaos of life with four children so that - as I joked to one of the nurses yesterday - there will probably be moments when I wonder what was so bad about having the babies in the hospital after all.
But I will be able to smell their necks and rub their heads whenever I want to.
It makes me cry just thinking about it.
*I said 34w2d before, but technically, since they were born right after midnight, it counted as 34w3d.
Yes, yes, yes. My experience was very similar to yours. Babies born at 35 weeks, who had no issues other than being the laziest eaters on the planet and a bit of emesis. It was 16 days before I could bring my (healthy, perfect, HEALTHY) babies home. I felt like I had no right to complain or be sad. I felt like I should suck it up...and that resulted in a complete melt down over Charlotte having an emesis episode due to a nurse trying to drain her feeding tube. That's when I learned that I had to let myself grieve. Even though, yes, there were babies sicker than mine, that didn't mean that I didn't have the right to feel sad each time I left the hospital without my babies. Because the girls were in Special Care and the NICU was full, we were in a large room on the Mother/Baby floor with another set of twins. So, I had the joy of walking past moms and their newborn babies every time I went to see my girls. It was ok for me to feel sad that I had to scrub in each time I wanted to hold my children.
Blah. Now I've just word vomited on your blog. Anyhow, yes. Cry, feel the pain. It's so good because it helps you let it go.
Sending prayers and strength and hope that your boys come home soon.
Posted by: Erin | Saturday, May 21, 2011 at 11:45 AM
You are an inspiration, my beautiful friend. Dan and I are praying for you all daily. Please let me know if there's anything at all we can do for you guys from our remote location. ;)
Posted by: Hallie Lord | Saturday, May 21, 2011 at 11:47 AM
Arwen, this is beautiful. I think we all fall into the trap of comparing our trials and wounds and sufferings to other people, wondering how we measure up and then acting (as we perceive it) accordingly. The thing is, there is always someone who is worse off, and someone else who is better off. God gives us our individual struggles because of what He wants us to get out of it, or He allows certain situations because He knows that we can handle it (with His grace, of course). And you are handling it beautifully! We were never meant to watch our children suffer, and we were never meant to be separated from them. Such a scenario is just one aspect of the damage Original Sin inflicted on our world and grieving over it could never be wrong. You and the family are in my prayers!
Posted by: Tree | Saturday, May 21, 2011 at 12:03 PM
Sending love to you all, Arwen.
Posted by: Diane | Saturday, May 21, 2011 at 12:11 PM
I don't at all mean to minimize your situation; I am sure the pain on your heart is great. If it helps, the next time you walk out that elevator onto the third floor, picture me, leaving in a wheelchair, my husband carrying my bags by my side, and no baby in my arms. My daughter was stillborn. I would have given anything to have her in the NICU instead. I am not at all trying to contrast our situations; we are both mothers who have pain in out hearts due to our children's conditions. I just thought that maybe, just maybe, you could give those little guys a kiss for me, and thank God that they are still with you. Your boys are doing great, and we will all rejoice with you when they come home!
Posted by: Amy | Saturday, May 21, 2011 at 12:32 PM
You inspire me :)
Posted by: Katie stathes | Saturday, May 21, 2011 at 12:32 PM
Arwen, I'm so glad you had that social worker. It's fine to grieve over all this. I"m crying for you just reading about it. I wish I could be there to give you a hug and to have Blaise and Camilla come over to play with my kids and whatever else would be useful and comforting. You are such an awesome mom and your children are so lucky to have you. We're praying for all of you.
Posted by: MelanieB | Saturday, May 21, 2011 at 12:48 PM
Oh, I remember that heart-tug of passing the homebound moms and babies as I walked in and out of NICU. So hard. And I remember feeling awful about the babies who were so much worse off than mine, and feeling jealous of the babies who only stayed in NICU for a couple days. Even in the best situation, NICU just plain isn't ideal. But you're being a great mama to your boys, and God will sustain you all! Someday, at least from my experience, your NICU days will be a memory similar to Blaise's hospitalization.
Posted by: andreajennine | Saturday, May 21, 2011 at 01:02 PM
I always say that the hardest situation to be in is your own. For sure some people are going through things that may be more difficult, but in this moment, for you, this is your situation and you are the one living it. That's why it's the hardest. My own twins had similar issues to yours and leaving my babies there, in the NICU, every single day was heartbreaking. Sure, there were babies in our NICU who were so much sicker than my girls, but that didn't take away from what we were going through. It just gave me more sympathy for the families of those other babies.
Posted by: Michelle | Saturday, May 21, 2011 at 01:25 PM
It's okay to say that yes, things could be worse, but they could also be much better too. Just because there is a bright side doesn't mean that there aren't shadows there too.
I hope that this time feels like a minor event soon too.
Posted by: HereWeGoAJen | Saturday, May 21, 2011 at 02:39 PM
I like a combination: feel my own pains and disappointments, and then use comparisons in order to put them into perspective, and also to guide me in how public I should make them---or how I should temper them with acknowledgment that things are not too bad on the spectrum of badness (but not to in any way say that therefore I shouldn't feel the way I do, or that I should pretend I don't, or that just because I don't have things THE WORSE THEY COULD BE that that means things don't suck nevertheless). The whole tagline of my blog, in fact: I acknowledge my luckiness, without giving up my claim to the suckiness.
Posted by: Swistle | Saturday, May 21, 2011 at 02:39 PM
Yes, NICUs are hard. No matter if you're there for a couple of hours, a couple of days or a couple of months. Prayers for you, your boys, your family, and all NICU families.
Posted by: Bonnie | Saturday, May 21, 2011 at 02:58 PM
My heart aches for you Arwen. I have no idea how hard that must be, I can imagine though. Praying for you and your family.
Posted by: Michelle | Saturday, May 21, 2011 at 03:07 PM
Sending you lots of hugs and prayers, Arwen! Thank you so much for keeping us updated by Twitter - I've almost considered getting a Twitter account just so I can tweet support back to you! This is a beautifully written post. I remember when you wrote about seeing the social worker when Blaise was in the hospital - what a blessing she was! Be sure to let her or another social worker help you again this time as you need it. You are doing so well at coping, and yes, other parents may have to go through more, but none of that changes that this is just really HARD, and it's ok for you to feel exactly how you feel. Peace and prayers to you!
Posted by: Nancy in Indiana | Saturday, May 21, 2011 at 03:15 PM
This was beautifully said. I don't have anything remotely useful to say, so I will say that I'm thinking about you and your family.
Posted by: Life of a Doctor's Wife | Saturday, May 21, 2011 at 03:37 PM
My husband and I have talked about this many many times over the past 15 years. At three days old our firstborn had a stroke. He was getting dehydrated, his bilirubin was high and his blood sugar was undetectable. We spent the next 8 days in the hospital with him. Today he is taller than me and my husband and is a happy healthy homeschooled high school freshman. We had quite a few friends who had babies around that same time. We would often get frustrated with other parents who complained about what seemed to us minor problems (crying babies or pooping issues). Then we realized whatever your situation is, it is major because it is your situation. Whenever it is your child (or children) it is a big deal. That has helped us be much more empathetic with others, no matter their issue. We also agree our early days of parenting influenced our family in very positive ways.
Posted by: Julie | Saturday, May 21, 2011 at 04:13 PM
Sitting here crying my eyes out with you just reading.
My first two boys each stayed in the NICU for about a week after birth. While they were easily the healthiest babies in the NICU, it still tore my heart out both times I was discharged from the hospital without a baby in my arms.
It's hard no matter what. And I'm glad you can allow yourself to grieve.
Praying that your sweet boys will be home with you soon, and getting all kinds of love from their big sister and brother.
Posted by: Lisa | Saturday, May 21, 2011 at 04:19 PM
I had a somewhat similar experience with my first. She spent the first week in the NICU because of infection during delivery. She spent just over 48 hours in the NICU side and then the remaining time in the Special Care nursery (which at our hospital is right next to the well baby nursery, with the NICU one floor down with the delivery unit). It was so hard to be so near the perfectly healthy families/babies! But, luckily I knew how long we were going to be there - 7 days total. Since she was our first, I spent about 13 hours a day at the hospital - since I did need to sleep and all... But it was hard. Hang in there! You can make it.
Posted by: AJU5's Mom | Saturday, May 21, 2011 at 07:07 PM
Amy, my heart breaks for you. I miscarried a set of identical twins toward the end of the first trimester. They were an extremely high-risk type of twins, and I knew my chance of carrying anywhere near term were slim. Painful as it was, I know it would have been infinitely harder for me to endure your situation. I'm so sorry.
I think people do have every right to grieve any type of painful situation, even while being thankful for the blessings that are accompanying the pain (and being grateful that their situation isn't worse). It's a balancing act. Pushing the feelings aside, as Arwen said, is likely to backfire. Gratitude will come as the grieving runs its course.
Posted by: Claire | Saturday, May 21, 2011 at 09:31 PM
I am so sorry you are feeling this way right now. But your feelings are your feelings and you don't have to apologize for them.
This past February my water broke at 21 weeks and I had to deliver my son to save my life. He was stillborn and I had a hysterectomy. I am so very thankful I have 2 healthy daughters, yet I ache to have more children. I feel guilty that I am not thankful enough to be content with my daughters and I think how it could be worse and this could have happened with my first pregnancy.
I remember your post saying if you had known how your future would unfold when you were struggling to get pregnant, you would have saved yourself many tears. I connected with that statement-we struggled to have our first daughter and were blessedly pregnant for a third time with our first son. And now my future will be as a mother to my 2 precious girls with their brother watching over us from heaven. It is very different than what I had planned.
I wish you all the best with your family. I hope your sons will be home soon. God Bless
Posted by: Amy | Sunday, May 22, 2011 at 01:34 AM
Nothing to add to what the others have said, just praying that your little guys will be out soon and you can - not forget this, but have it fade into its place the way things did with Blaise.
Posted by: Sonetka | Sunday, May 22, 2011 at 03:37 AM
Ambrose and Linus are very blessed to have such a caring mom. Your family remains in my thoughts and prayers. Oh, and I LOVE their names!
Posted by: Rah | Sunday, May 22, 2011 at 08:59 AM
I've been following your blog since Camilla was a baby but I think this is my first time commenting. Even now, I am hesitating to comment since I don't know if this will make you feel better or worse, but every time you mention your irritable uterus and the persistent contractions you endured, I can't help but think that this pregnancy with Linus and Ambrose has helped....desensitize it... Now that I've shared this with you, not only do I appear slightly crazy with my predictions of the future, I have become one of those people that annoy me, telling me with confidence that they just "know" next time will be better, that this is the worst it will ever be, that it will only ever get better from here. Because really? I don't know what's to come. Not even a little. As you aknowledge, things could be so much worse. And yet? Every time I read something about your pregnancy, contractions and these early baby days? It just pops into my mind. One day, this will have helped. You won't see this as how your body failed to make it all the way. One day, we'll read your blog entries and be thankful how things happened this time around and marvel how it helped for next time. At least that's what I really, really hope.
Thank you for sharing your life with the blog-reading public. Like the commentor above, I've considered joining Twitter, just so I can follow you (This flies in stark contrast to my fiercely ingrained lurker tendencies). :)
Posted by: Mary | Sunday, May 22, 2011 at 02:24 PM
Yup. I've NEVER just "brought a baby home from the hospital", except, ironically, our foster child. :) I would ALWAYS tell myself that in the NICU, "Oh, at least they'll live." But it is HARD.
Hang in there, Arwen! I get it.
Posted by: Rach | Sunday, May 22, 2011 at 05:29 PM
It is so important to allow yourself to feel and express those feelings in a safe and healthy way. I didn't/wasn't able to do that earlier in my life and ended up learning that lesson the hard way! Grieving loss, no matter how "small" it may seem to us or anyone else, is necessary for our minds, bodies and souls. You are one strong woman with a lot of love and grace surrounding you! Thinking of you and praying for you often.
Posted by: Andrea | Sunday, May 22, 2011 at 09:13 PM
"Could be worse" is not inspirational or motivational. And wanting your babies home with you is a good thing, which means being disappointed that they're not is also good. Doesn't it? Logically?
Posted by: Slim | Monday, May 23, 2011 at 12:01 AM
I can't even imagine what it must be like to have to leave your babies behind when you go home. I'll pray for you.
Posted by: The Sojourner | Monday, May 23, 2011 at 12:52 PM
Can't wait for those boys to come home Arwen.
Posted by: Erica | Monday, May 23, 2011 at 04:35 PM
I've been thinking about this post for a couple of days, trying to figure out what to say, but I still don't know. I think about you and the boys all the time and love getting updates either through Twitter or here!
Posted by: Jessica | Tuesday, May 24, 2011 at 01:21 PM
My heart truly goes out to you.
Posted by: Jeane | Monday, June 13, 2011 at 08:35 PM