Potter’s syndrome birth plan

I’m sharing this in case anyone preparing for the death of their newborn comes across my blog. I prepared this with some help from the Potter’s syndrome website, and I’m glad I had everything written out beforehand so I didn’t need to spend much energy explaining what I wanted to have happen in the hospital. (Also, the volunteer at the hospital said I was really well prepared. Go me!)

Birth plan for Mika & Jarom 
Baby: Christian

We would like the door to remain closed as much as possible.

Our biggest hope is that we will be able to hold our baby alive, even if only for a few minutes. Because he is breech, please make every endeavor to help Mika deliver him quickly, without harm to the baby.

Mika is not planning on having an epidural, but may change her mind depending on how the delivery is going.

We will have a photographer, as well as our parents, present during delivery. Mika would like to have the men exit the room when a nurse comes in to check how labor is progressing. No other visitors (except those noted below) should be allowed in without express permission from us.

When the baby is delivered, we want to hold him immediately. Please delay any non-urgent procedures. If he is born alive, we want to delay cord-clamping. We would like him to be washed/cleaned off while we hold him.

If circumstances permit, our bishop will come to oversee christening of the baby. This would need to be done quickly due to Christian’s extremely short expected lifespan, so we appreciate assistance in getting the bishop to our room as soon as possible when Christian arrives.

A friend will be coming to take imprints of Christian’s feet.

We would like time alone with the baby and our parents (the photographer may stay for this). We do not want to feel pressured to give his body back before we’re ready.

If there is a social worker, grief counselor, or other volunteer available to speak with us, we would like to have them come in.

We are planning to do a burial through Wheeler Mortuary in Springville. We request that the hospital staff alert them at the appropriate time that Christian’s body is ready to be picked up from the hospital morgue.

We would like to keep the baby’s blanket and hat as mementos. If possible, we would like a lock of his hair (if there is any) and any hospital bracelets or bassinet cards. If there are other items you think we may appreciate, please send them with us. We want to know his weight and length before we leave the hospital.

Once we feel ready, we would like Mika to be discharged – without staying overnight, if possible. Please include any necessary prescriptions, including something to help Mika sleep.

A note: almost everything went according to the plan we prepared. We were able to hold Christian, bless him, wash him, dress him, and stay with him as long as we wanted. My OB sent me home with a generous supply of Ambien to help me sleep. As I mentioned before, we were given a beautiful box of mementos. One of the few things that didn’t go as planned was the epidural, which I had to get when it looked like there might be an emergency C-section. Thankfully, the hospital staff followed our wishes as closely as possible.

If your baby has a birth defect and neonatal death is a certainty, I strongly recommend putting together a birth plan. Being at the hospital is stressful, sad, and physically and emotionally draining, so spend a while before then thinking of how you want the day to go. You can contact Now I Lay Me Down to Sleep to arrange for a professional photographer to be with you in the hospital, free of charge, to have some beautiful pictures of you and your baby. I also suggest reading Still Standing, a magazine that addresses child loss and infertility. And, of course, get in touch with me if you want.

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Personhood

In looking ahead to the six-month mark since Christian’s birth, and then to the one-year mark, I’ve wondered how I can commemorate his short life – and, more importantly, how my life has changed since having him. So I have tried to pay special attention to the ways in which I’m different now than I was in March or April. The biggest change I’ve noticed is that I am more willing to believe that every person I encounter is really a person, a person who might be having the absolute worst day of his or her life. I say “believe” because intellectually, I already know that everyone is their own individual and has unique experiences – it’s something else to feel it and acknowledge it. This has made me, I hope, more patient and compassionate, in theory if not in practice.

What I’m thinking of doing, then, is asking my friends and family (and myself) to make an effort to spend Christian’s birthday believing that every person we encounter is really a person, and then treat each person as such. To not dismiss someone because of the way they dress, or where they work, or because I’m in a hurry and don’t want to expend energy being nice.

We still have more than 7 months until then (September 24 will be 5 months since Christian died), so maybe we can do some practice runs before then.

What are your thoughts?


Anguish

No matter how often I tell myself to expect to come down after a period of good days, it always shocks me that I can still feel so miserable. After the baby shower I hosted recently, the whole house was clean, we were eating dinner at the kitchen table every night, and I was doing really well. Of course, it didn’t last.

I know it’s logical and normal and expected that I’ll have a hard time for months, years to come. But on some level I keep hoping that when I feel good, it’s because I’ve made great progress toward healing and things will keep getting better. Overall, yes, I do think I’m making progress and I feel much better than I did four months ago – but how foolish of me to hope there wouldn’t be any more pain.

I hate seeing babies. I don’t hate babies – I just can’t stand the anguish of having buried my baby. Of not only knowing but of feeling, over and over again, that I’ll never hold Christian or watch him grow up or send him to his room for being naughty. He’s missing from my life and it’s a huge, gaping hole. I hate how severely grief hurts. Before all of this, “grief” was just a word. Now it’s almost tangible.

On good days I barely remember what this despair is like. When it comes back, though, I wonder how I’ll ever get back to normal.


Donate

Yesterday I learned about a family whose oldest daughter was diagnosed with high risk leukemia in 2010, whose second daughter has faced unexplained medical challenges, and who just had a stillborn baby girl.

I know from experience how quickly the medical and funeral costs add up. On top of that, this family still has medical bills from the care of their older girls. Can you spare $10 for them? I’m skipping donuts this week and next, and using that money for a donation instead.

There are a lot of people reading this blog now that I don’t know personally. We’ve been blessed to have lots of financial help with Christian’s medical and funeral costs. I’ve talked in the past about how I believe one of the fundamental reasons for existence is to help each other – will you help? If you aren’t able to donate financially, please consider sharing a link to the fundraiser page. I want to see everyone rally around this family and validate my belief in the good of humanity.


Painful

My original due date was next Tuesday. In the past few weeks I’ve learned that a lot of my friends are expecting; most of the other moms who were due around the same time as me have had their babies or are about to, obviously. It’s so hard to be reminded of the hospital bag I’m not packing, the epidural I’m not getting, the blanket I’m not trying to swaddle, the tiny fingers I’m not holding, the stinky diapers I’m not changing, the healthy baby I’m not bringing home.

When I read a few books on grief after I learned that Christian wouldn’t live, they talked about many women feeling jealous and resentful toward other moms, especially moms with new babies. I didn’t understand that I really would feel like I’d be glad to be desperately uncomfortable in the last few weeks of pregnancy – glad to be going through a long labor with a healthy baby at the end – glad to be spending sleepless nights with a newborn.

This is still miserable.


Unmotivated

Every physical reminder I have of Christian fits into a box that sits on top of our piano. So sometimes I begin to wonder if I made the whole thing up. I was pregnant, right? Did this really happen? The world keeps going on, but it seems like I’m stuck dwelling on Christian’s death. Is that normal? Am I going crazy (again)? Should I have somehow gotten over it and moved on by now?

I feel suspended – unable to convince myself to be productive, or to be social, or to cope. Day after day passes by while I do nothing. I’ve had so many wasted days lately, and I certainly would rather be a normal person again but the motivation to even try just isn’t there. Instead I make occasional tiny efforts at keeping up with life, distract myself with books or painting or sleep or food (randomly, I have a newfound love of dry roasted peanuts and macadamia nuts), and keep . . . waiting. Waiting to feel better or just to feel willing to try feeling better.

I know: I ought to throw myself into something; once I start, I will feel a little bit better. Logic and depression just aren’t friends, though. I absolutely don’t want to do anything, except wait.


Tact

Yesterday Evan saw this picture of Christian on the computer.

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He started laughing. “Christian’s nose looks like a pig nose because it doesn’t have any of these!” [sticks a finger in each nostril]

Only a 4 year old could get away with saying that. Thanks for keepin’ it real, Evan.