Should Be Versus Am

Today I am 19 weeks and 3 days pregnant.

Tomorrow, I should be having a regular anatomy ultrasound and check up with my OB scheduled.  The OB who delivered Kenna and has been my doctor ever since.   The OB who listened to my gut when I told him something was off with Logan and ran extra tests and encouraged us through our VBAC.  Who I trust beyond measure to take good care of me and my babies.  Who was full of emotion telling me of the seriousness of my situation when he admitted me to the hospital early last Thursday morning.

I am canceling that appointment.

At my post- admission follow-up appointment Monday, Dr. S. decided that the best course of action would be to refer me to the Mayo clinic to see the perinatology team there.  They scheduled me quickly and we spend over 5 hours there on Tuesday afternoon.

It was an emotionally draining day.

The short version is that my bleeding and fluid issues were caused by two different, rare, complications.  The bleeding is being caused by a complete placenta previa and the fluid is due to the fact that it appears baby does not have any kidneys or bladder.

I'm not really sure what else to say about that other than we were given the option of having an abortion now, or carrying the pregnancy as long as possible (the placenta previa may dictate just how long that is) and hoping for a few moments with baby before he or she passes.

If you know me at all you know that we are pro-life, absolutely no exceptions.  Abortion takes a life that is not ours to take.  That means there wasn't really a choice for us and I might write more about this later as time goes on and we continue to process all of this.  Suffice it to say I do not believe that it is even logical to believe that choosing to end your baby's life early would be less emotionally difficult.  Even the idea of "getting it over with" is false because I am sure the immediate grief would be the same and someday you may wish you had those last few weeks of kicks.  Any parent of a stillborn baby, including me, would tell you they would give their right arm for 5 minutes with baby even if they knew the outcome would be the same.

And that, right now, is what we have to hope for.

A few more months of a beating heart and kicking baby feet.

A few moments in the OR (due to 2 C/S in combination with the complete previa I don't have another delivery choice) to hold our baby while he or she is still alive.

Maybe he or she will open their eyes.

I know I hope so.

We know that at any time this situation could change for better or worse.  We do believe in miracles, but we know that they are not available for mail order either. We do know, however, that continuing to carry this baby and continuing to pray is the only way we to open our family to such a miracle.  On the flip side, the risk of stillbirth with no fluid alone jumps from 1% to 15%, I have no idea how the previa affects those numbers but it certainly can't be good.   There are also some not insignificant risks to my health in continuing to carry baby as long as possible.  The risks are serious enough I have been told that I should not be alone or drive until this is "over".

I feel like it will never be over.

No, I take that back, I know it will never be over.

To this point (even after 5 separate ultrasounds in as many days) no one has been able to say that we are having a boy or a girl.  They told me it may be possible to tell as baby grows more (and so far he/she is growing well) but they can't make any promises.  One of the biggest challenges right now is that I have no fluid at all, not even one tiny pocket.  This means that a lot of the experimental treatments that my well-meaning, google-proficient friends have passed along aren't even possible because there isn't a safe place to begin.  Once they cross the uterine wall with any medical equipment, they are blind.  There is no place they know they won't hurt baby more (or worse).

That's not a risk we are willing to take right now.   If a fluid pocket develops or anything else changes we might revisit it at a later date, but for now this is where we are at.

Now we will ask ourselves, what we would do differently if we knew Kenna would die.  One of the things we know for sure is that we usually wait until after we have a new baby to take a family picture, but knowing what we do we can have one done while I am still pregnant.  We have time to make arrangements for our priest to be present at delivery for a baptism.  We selected godparents for our baby, and even though our friends Craig and Lisa live a bit aways, Lisa tells me she will be there if she can.  We have time to celebrate special moments.  Most of the time, people don't celebrate that they are x number of weeks pregnant but every day is a victory right now.  

Next week we will meet not only with our specialists at Mayo, but also with the neonatology team.  They will talk us through what palliative care entails and tell us our options.  I am told that the entire Mayo neonatology and perinatology teams meet twice/month to discuss every single high-risk case they have and the current plan, any changes, or anything special that needs to be covered.   We will also have another ultrasound to look for that ever elusive fluid pocket or underdeveloped rather than absent kidneys that would give us at least experimental options.  (Just to be clear, we have been explained the risks/fatality rates even if we find those things is still almost 100%.)

Since I am not longer on full bed rest, we will be able to return to a somewhat normal schedule.  Tim still has a dissertation to finish and I still have a Master's degree to finish.  I may or may not get that done but I'm going to keep working, albeit more intermittently more than likely.  Since I can't drive we won't be able to participate in many of our normal homeschool activities, speech and OT will need to be pulled back on, and we will have to save errands and household jobs until Tim can drive us.  Tim is working on a plan to get us to some of these activities, but mostly we are taking things one day at a time.

We have continued to have a steady trickle of meals, helpers, and just friendly faces coming through the house.  My friends in town have agreed to be on call as needed during the times Tim is not available and have discussed setting up an actual schedule.  They know that we are hopefully in for the long haul here.  The current goal is to keep things going until 36 weeks, which would be early January.

Be mostly, we just really don't know.  

I don't know what will happen in my life, or in this space.  I don't know what will happen with my Master's degree, my book, or homeschooling Caleb again.

I just don't know.

I don't even know how I feel right this moment.

I do know that all I can do is take one moment at a time.  It takes a lot of effort just to think about what comes next.  After a shower, I get dressed.  When it is time to feed the kids, I should feed myself even though my body betrays me and says I don't need to eat.

My friend Leigh described it as a complete fog of being physically and emotionally drained.

That's about it.

Today I will simply be as best I can.

I'm sure you will hear more about all of this in the coming weeks and months, but you may also read posts that seem completely normal.  Because at some point between now and the elusive *then* we will find a new normal.  We know that great loss is coming, but we know that we have time.  I hope and pray that by having the time to move from here to there, we will survive scarred but whole, shaken but not broken.

And that, is the best case scenario.


Rita Buettner said...

Prayers for you and your baby and all those who love your little one so much. I hope you will find ways to celebrate your little one's life, especially during this difficult time.

Angela said...

It was with tear filled eyes I read this post. I am so, so incredibly sorry for what you are going through. I have been praying for you so much these last several days, and will continue to do so.

Angie said...

We will continue to pray Heidi. My heart aches with you and your family. Sending love and prayers.

Tearri Rivers said...

Sending your family a lot of love and prayers!

Olivia D {The Road to Poland} said...

Our family will be praying for you.

Sarah Stainthorpe said...

Jana pointed me in the direction of your blog, with this heartbreaking news. I am so sorry to hear of this Heidi, you and your family are in my thoughts and prayers.

Helen Rogers said...

You and your whole family are in my prayers.❤️

Meredith said...

Praying. Love you.

Lisa Steger said...

I'm dead serious that we will do whatever we can to be there, even if it means leaving in the middle of the night or taking days off from work, etc. I cry every single time I talk about you and you guys are never far from my thoughts and are always in my prayers.

Lisa Steger said...
This comment has been removed by the author.
Sara said...

Lots of prayers coming your way from your distant Byron relatives. We're channeling your Great Aunt Agnes who had a fondness for babies. Love to you and your family. Sara

Dual Learning Home Educator said...

Oh Heidi,
I am so sorry. I don't even have words. To be honest, I don't pray often. But for now on, I will pray for your family. I am putting a sticky note to not forget to daily ask God to help you through whatever He brings your way.