Work update!

I have a new job!

I still have my old job too.

Since I returned to work I’ve been seeing patients in the office 4 days a week, the fifth day is a day of appointments- therapist, chiropractor, acupuncture and general mental well being. I took a significant pay cut to work this schedule, one that kept me out of the hospital, and I am thankful that my practice was able and willing to accommodate me. But the “(when) will I go back to births” question always hung over my head. When I first asked to be an office-only midwife, I left the door open to return to birth, but with no time line. I still like having that option, but my practice needed something a little more definite. I honestly thought I’d be back by the holidays (Thanksgiving and Christmas) so I could repay my co-midwives for unexpected holiday time they put in for me last year. But I soon realized that goal was unrealistic. It caused me a lot of stress to even hear my co-midwives even talk about holidays and schedule, knowing they had more to do because of my absence from the hospital. When the topic came up at our winter midwife meeting, I conveniently had to use the bathroom at that moment. In addition, my practice wanted to know whether they should hire another midwife to replace me or if I’d be back soon. Well I finally was able to give them an answer.

As of April first I took on a part time position as Program Director for Hope After Loss, my local non profit helping those who have experienced pregnancy and infant loss. The organization runs peer-led pregnancy and infant loss support groups in four towns, does outreach and education to hospitals, medical providers and anyone who asks, and provides burial or cremation financial assistance to those who cannot afford it for their babies.

Taking on this new position means I plan to remain in the same capacity at my other midwife job- no call. I gave them the go-ahead. Hire another midwife! Takes a huge burden of guilt off my shoulders. I know my colleagues are sad to hear I’m not doing birth in the near future and I’m sad too- there are some things I miss about it, certainly the hospital staff I almost never see anymore! But I know I’m not ready. Some may call it avoidance, but I call it self-preservation. I need to still work on enjoying midwifery in the office and finding fulfillment there before I can return to joyful birth in a place that holds so many memories for me.

This wonderful new part time position has kept me a busy bee these past few weeks, hence my absence from the blogosphere.  But my dear friends, I have missed you!  And I”m trying to be back.  I have much to tell.

Will the tree bloom again?

Shortly after Mabel died, my workplace gifted me a beautiful 50 year old bonsai tree. “It’s Mabel’s tree,” they said. I was both wowed byt the gift and made a little nervous. It was beautiful in its small twisting branches, tortured roots and delicate green leaves. But it was also a living thing. Something that could die. Chris and I don’t have the best track record for caring for houseplants and now we were entrusted with keeping a fifty year old tree alive, in Mabel’s name no less. We couldn’t keep a baby alive, how were we to keep a tree alive? It felt like a huge responsibility. Watering was more than just bringing a watering can- the tree needed a bath every week. Little by little we cared for the tree, keeping it alive until the months warmed and we were able to keep it outside. Direct sun, fresh rain decreased our burden and the tree continued to live. When the weather got very hot those delicate green leaves started to turn brown. Maybe it was too hot, maybe it was neglect on our part, but the tree didn’t look so good. Chris reassured me that this type of bonsai was seasonal, but I was doubtful. The leaves fell off slowly as we brought the tree inside for the fall months. As I stared at the barren branches while the weather grew colder, Chris still reassured me, that despite appearances the tree was not dead. We continued to bathe the tree in hopes that it would survive the winter.

Come the New Year, Chris looked over at the tree and noted some little buds on the bare branches. Sure enough, the tree still has life.

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Should I take this as a sign of better things to come?

Have you seen any signs of hope lately?

Day 8: Resource

I walked into a Hope After Loss (formerly Hygeia) support group meeting ten days after Mabel died.  I paused in the hallway outside the door, crying and holding Chris’s hand.  I knew I needed to go in, but I cried out of fear and sadness.  I sat on the couch that first meeting and got to tell my story from the beginning.  Several meetings later I found myself among a group of women who became friends, some of who I check in with almost daily.  At a meeting a month later, one looked at me and said, “it’s good to see you smiling,” as I walked in.  Only in that place, among those people, would I have welcomed such a comment.  Anywhere else, I would have felt guilty or the need to explain that despite my momentary smile, I was still very very sad.  But not there.

This past weekend we walked in Hoe After Loss’s annual Footprints on Our Hearts walk, where I was the third highest individual fundraiser (thanks to many of you!).  I was joined by many friends, the babylost and not, surrounded by love and support on a day to remember Mabel and all babies gone too soon.

#CaptureYourGrief

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Two Bunnies  

As I have written before, some days are better than others.  A couple weeks ago I had a good day and wrote this at the end of it.  Today was neither good nor bad, it just was.  On the bad days I need to be reminded of how I feel on the good days, but on those days there’s no way I can let hope sink in.  So it’s today, on a day that simply was, I post this, to remind me that some days are actually good.  Some days I have hope.

 

As we sit outside on our patio, we watch two little bunnies prance around our yard.  Whenever I see two animals together, I joke that they’re married- a reference to the character, Milton, in the movie Office Space who mumbles about watching two squirrels in the tree that are married.  Chris sees the bunnies and says, “I don’t think they’re married, though.  I think they’re brother and sister.”  We watch for many minutes as they essentially play chase.  The slightly bigger and in my estimation older one hops quickly ahead and the smaller, younger one bounds after him.   They figure eight all over our yard, at one point playing cat-and-mouse around an old stump on the grassy hill.  We talk about them, laughing at their chase and talk to them.  Their ears prick up, so they can hear us, but they don’t bounce away.  I’m amazed at how near they come to us.  It’s delightful to watch.

I smile as I think of a conversation I had earlier that day with a friend and fellow babyloss mom.  We were talking about signs and hopes for future children.  For her seeing two butterflies gave her hope.  I remember in the beginning of my pregnancy, after Mabel’s Down Syndrome diagnosis, as I was running in our neighborhood, I consumed by thoughts of miscarriage and stillbirth.  I was saying to myself over and over again, “stay baby stay,” willing the forming life inside me to stay put.   Then I saw two deer in a neighbor’s yard.  I’m not really one much for signs, but I remember thinking that it’s got to be a good sign.  Seeing two deer- two.  One for me and one for my baby.  Staying together.  A song that was giving me comfort at that time was the Indigo Girls’ Power of Two.  Seeing the two deer gave me hope.  And my baby did stay through my pregnancy.

Now as I sit, almost giggling at their antics, I hope the two bunnies are a sign.  Siblings, like Chris said.  We watch them move from a game of chase onto a game of hid and go seek.  One bunny runs down the hill and a few seconds later the other comes looking.  I try to tell the seeker that the hider is over there.  I point and call to him.  His ears pick up again and he looks at me.  Then he hops over to the garden- Mabel’s garden- in pursuit of his sister.  Bunnies like carrots.

Finding my hope

We have our plan. But I am so worried that our plan is going to change.  I think it’s a reasonable worry. I feel like very little has gone according to plan so far, and if I mentally prepare to go to the hospital at 34 weeks and deliver at 37 weeks, it just won’t happen.  And the disappointment on top of whatever bad news changes the plan is just too much.  I am ok with the plan- I have second thoughts at times, but when I get to thinking, it seems like the best for our baby.  I actually like the idea of being in the hospital (ha! I say that now…) for some time as a way to prepare.  Getting into the hospital is one step closer to meeting the baby and facing whatever comes afterwards.  And three weeks is a nice long time to let that all settle in and seem real.  So now that I’m hoping for that time, I’m worried I wont get it.  Something might happen before 34 weeks.  I could go into labor.  Baby could stop growing. I could have a stillbirth.  And all those things would expedite birth, and then I’d recover and eventually have to face real life sooner.  With our plan, if I can make it, I wouldn’t have to face whatever new reality (like returning to work after my baby has died or a baby that is terminally ill) until at least April.

 

I know some people may think I am being negative, but I am still planning that my baby will probably die.  On paper, having hope sounds like the “right” or “best” thing to do.  But honestly, having hope in the traditional sense feels wrong for me.  We have had such a rollercoaster of hope, then no hope, then hope, then no hope.  I need to choose one- either stay up or down.  It’s the up and down that hurts so so much. One of my coworkers said there is a fine line between being optimistic and being realistic.  So much truth in those words right now.

 

We had another ultrasound this week.  In short everything is fine.  Baby has grown enough.  Fluid is the same (now I have 0.9cm of fluid instead of 0.  It doesn’t change anything, but its nice to think my baby has a little cushion).   For a few minutes, when we thought it had been longer between growth scans (my fault, I thought it had been almost 4 weeks.  Stupid placenta brain. It had been just under 3 weeks), we though the baby hadn’t grown much.  But once we realized my mental math mistake and re-measured and recalculated, turns out, baby’s growth is fine. 3lbs 7oz.  32%  (previously 2lbs15oz and 54%).  But I did have a few minutes of sadness mixed with panic.  Usually if a baby stops growing, they would deliver and help the baby grow on the outside.  But in my case, the answer is not that simple.  I’ve been working on not thinking about the “what if” scenario- what if the baby had stopped growing?  What would we do?  For now I’m trying to focus on the take home message- growth is fine.  Slowing a little, which is not surprising in a baby with Down Syndrome.  I just don’t want it to stop.  I want our plan to work.   That’s some sort of hope, right?

 

The fact that I get up every day, go to work, see friends, exercise, run errands and keep busy is also my hope.  If I lose this baby I can not imagine how I am going to get out of bed.  And so just getting up everyday is how I hope.

The Rollercoaster

I have spent the last two weeks preparing for my baby to die.  It was the most concrete thing I could hold onto.  I knew the facts.  Baby’s kidneys are damaged, leading to low fluid which will cause either stillbirth or the lungs inability to work after birth.  I know what stillbirth is; I see how people cope.  All my research showed such a poor prognosis, that I couldn’t imagine another outcome.

Today we had an ultrasound by one of the more experienced Maternal Fetal Medicine doctors- he had also done our CVS and fetal echo.  I respect him and value his opinion.  He gave us a glimmer of hope.  The baby’s growth was good- 54% (2lbs 15oz).  There was a tiny pocket of fluid- 2cm.  It’s not a lot.  It’s about what it was the two weeks ago- it had dropped to 0 last week, so its feels like a little improvement.  But most importantly, he said the chest looked essentially normal. He has seen ultrasounds of babies with hypoplastic lungs (small, non-functioning) and their chests look like just ribs and heart- not really much for lungs.  Our baby’s chest looked essentially normal. There is still no way to tell lung function, but it was a positive sign.

He encouraged us to meet with a neonatologist again to discuss prognosis.  He used an online program that could calculate survival based on gestational age- the closest figure he could give was at 25 weeks/1000gm, the survival rate was in the 90% and survival without severe/moderate neurological impairment was in the 70%.  These are rough figures and our baby is bigger (1320gm) and further along (29 weeks), which means the numbers would be better.  But this is from MFM and based on gestational age.  It doesn’t take into account our baby’s poor kidney function, possible poor lung function and other potential complications that come with Down Syndrome.  A neonatologist will likely be able to paint a more realistic picture.

It’s tempting to think that this means this baby is going to be ok- but I’m not sure that’s totally realistic either.  This baby will have kidney problems, will have breathing problems, will have neurological problems (from Down Syndrome and/or prematurity).  This baby still might die.  But there’s a chance?  I had given up hope, but now I feel like there might be some.  It feels scary and dangerous.

For now I just wait til the meeting with the neonatologist- I can’t commit to hope nor despair.  I’m in limbo.

Learning how to cope

We made it through my first goal.  Get through Christmas.

I’ve taken some time off work, which has given me the chance to think, adjust and move forward.  I had a week at home alone and then this week, Chris was off work and we also spent time with my family.  All this time has made me feel more ready to get back to some sort of normal life.  It’ll be a new normal, but it’ll feel like some sort of life again.  I’ve reached the point where I think being at home is no longer very helpful.

The hardest part of figuring this all out is trying to come up with a coping strategy.  Do I have hope?  And hope for what?  Hope that this baby will live?  Hope that this baby will come home?  Live a life off a vent?  I feel like those are hard to really conceptualize.  In general I tend to be someone who prepares for the worst, so that I can be ready if it happens.  It may not happen, in which case I’ve worried for nothing.  But its how I’ve operated in the past and its worked in some weird way for me.  So I have spent this time thinking about losing the baby- what it will be like, how I will cope.  And if I don’t lose the baby, how much more wonderful that will be, right?  No one can paint a picture of the future for me- my case is not common.  I have helped people through loss and its the only scenario I can accurately picture.  So I am grieving, preparing to lose this baby.

I’m terrified to return to work.  I’m still emotional and don’t really know when a crying spell will hit.  I just hope when they come, they are not too public.