One Week At A Time

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From the moment we were first admitted to the hospital from the emergency room, almost two weeks ago now, we were told we needed to take things one hour at a time.

Job number one...stop bleeding.

Don't go into labor.

Check.

Then it became one day at a time.


Keep not bleeding.

Still don't go into labor.

Check and check.

Last week when our care was transferred primarily to the Mayo clinic, we began to talk about looking beyond the initial crisis into longer term management of pregnancy care.  What types of restrictions on my activity would be necessary to manage my specific type placenta previa and what baby's longer term prognosis was.

Honestly, none of it was good news.

The week that followed was fairly stressful and full of emotion as we adjusted to our new pregnancy reality and expectations.  We called heavily on our prayer warriors- friends and family, blog readers, and of course the great Communion of Saints to intercede on our behalf.

We had two specific prayer requests going into our appointment today.

The appearance of any fluid and a gender so that we could name baby.

Admittedly the appointments got off to a rocky start.  I had prepared myself to start gently with just the nurse visit to review my chart and make sure it was complete and correct.  Instead they threw me straight into ultrasound.   I kind of melted down at the change.  Like channeling my ASD child, melt down.  I was ready to walk out and skip the whole rest of the day.

It was ugly.

In addition to that unexpected change, the next *news* was that we still had no fluid and they still could not determine gender.

Talk about a kill joy, first thing in the morning.  Oh Heidi, you wanted to have hope?  Nope, no hope for you....

The strange thing is, however, that from there a series of odd, potentially good, but at the very least productive, things did happen.

First of all, our perinatologist was EXTREMELY happy and optimistic about the fact I haven't had more bleeding.  It might be the first and only time I have ever seen her smile.  To the extent she even questioned if the previa had not been as severe as it appeared initially.  I'm not sure how to describe what she told me, but basically its possibly that my placenta is effectively *slouching* over my cervix due to lack of fluid and appearing to be a previa, but is not actually attached there.  It could still be in the way and complicate a vaginal delivery, but there is also the possibility that it could move completely and she even seemed to think a vaginal delivery is not out of the question if that happens.  She wants to do a repeat ultrasound around 30 weeks (these are done transvaginally so not just combined with my regular ultrasounds) to look at the placenta and make a better decision.

This is the first time anyone has talked optimistically about a number of weeks of pregnancy that started with a 3.  I mean I only hit the 20 mark yesterday!  We won't know if anything has changed unless I actually make it to that mark, but I guess this whole two weeks with no repeat bleeding is a really big deal.

Then we started talking honestly about the baby side of the equation.  I expressed my desire to feel like we had better information and that we didn't just sit around and wait for baby to die.  Even if baby dies I want to feel proactive that we did what we could and explored all of our options.

I was honest about my desire to give baby a name and find out a gender so they actually took us back to this fancy new machine that was on loan from a medical company representative to try and convince them to buy it.  It was definitely the clearest ultrasound we have had yet, even without fluid, but they were still unable to see a gender.  They WERE, however, able to find all four heart chambers and really look at brain structure which they hadn't been able to do previously.  It felt almost like a normal mid pregnancy ultrasound. Of course this was all "off the record" but even my peri commented, "You may be the patient that convinces us to buy this machine."  They were still unclear, however, about the presence or absence of kidney and bladder.

We started talking about other options for both determining gender and for clarifying the kidney situation.  Twice they have seen shadows or tissue clumps that may be the kidneys but they just aren't clear for sure.  Apparently from the neonatology perspective the difference between present and normal, present and malformed, and absence is pretty significant.   We learned this, because we had a surprise appointment added to our day with the on-call neonatologist (at their suggestion) to talk about options at delivery should we decide to give baby some respiratory support.   Apparently the first concern will be lung development period, but there is an alternative ventilator that can be used with babies who did not have fluid to practice breath with.  The benefit to attempting or not attempting this type of ventilation depends on what the renal situation is.  There is no point in attempting it if there isn't anything they can do about the kidneys and baby isn't a good candidate for dialysis and eventually a transplant.

That's all 100 steps down the line (probably more) but now we know that there are actually a slim number of options if a bunch of things align correctly.  The neonatologist kind of said that it would be up to baby to prove to them in the next few months in utero and at birth that he or she could benefit from this type of intervention before they would really want to go ahead with it.  He also said that it's by no means a guarantee and may only increase the longterm odds the tiniest fraction of a percent but it is an option especially if baby seems to be making some efforts at breathing at the time of birth.

But they need to know about the kidneys, so *we* are going to have an MRI in the next few weeks.  The MRI does not rely on the fluid as ultrasound does and there really aren't any risks to baby at this point of development.  Honestly, nothing has really changed prognosis wise..things are as grim as ever.... but just listening to people talk about scenarios where baby has even just a tiny fighting chance really bolstered my spirits after the initial disappointments of the day.

In regards to gender, we actually have an answer in progress and will know one way or another in the next 7-10 business days.  We decided to do a blood test that looks at fetal DNA in mom's bloodstream and determines things like chromosomal abnormalities (which probably wouldn't change anything, but is more information in any case), but will also tell us gender with certainty.  Far more certainty than an ultrasound, I just have to wait a little longer.

Which means that at least one of our two specific prayer requests HAS actually been answered, we just don't know what that answer is just yet.

In addition to meeting with the neonatologist on-call about life saving measures, we also met with the palliative care neonatologist.  I thought this conversation would be a lot harder than it was, to be honest.  I think with our past experience I do kind of know what I want in regards to baby and what I don't want.  I had a lot of specific questions and he answered them the best he could.  He also gave us some good information about the child life specialists there and some activities they can do with siblings the day of delivery to help them (A family tree with all of my kiddos handprints with ours and new baby that the kids help make?  Yes please!).   He also had information on what all this means in terms of having a c-section and recovery.

In all of these appointments today, everyone kept acknowledging that things could get better.  Not that they would necessarily, but that they could.  I wondered if it was just me, but I asked Tim and he got the same impression.   It was good to hear them speaking of possible positive outcomes even if there is little to no medical reason to believe those outcomes are going to happen.

We were at the clinic for almost 8 hours total and the difference in my peace of mind between the initial ultrasound and when we ultimately came home was pretty significant.   We really don't know anything new or different, but for the first time I feel like we have a plan that doesn't involve just sitting around with our hands in our pockets waiting for baby to die or me to start bleeding or go into labor.   Even if the end result is the same, that difference in perspective is probably going to be huge for me.  Very sustaining over the coming weeks and hopefully months.  Just hearing appointment after appointment acknowledge and hope that this can be a close to term pregnancy was a big change from last week.

Up next is an appointment tomorrow with our doctor in town to catch him up-to-date on everything that has changed in the past week and speak with him about delivery options if baby is known to be stillborn or extremely premature.   In either of those cases, we would prefer to deliver closer to home with our doctor and the perinatal bereavement group that we worked with when Kenna died.  This will require some coordination, however, so we are going to talk about that tomorrow.  We are also going to talk about the possibility of them continuing to handle some of my prenatal care.

Thursday we are having a new family picture taken by our favorite photographer.  We haven't had an updated photo since Logan was a newborn so I'm excited for this.  

Then on Friday we have our first homeschool gym co-op of the year which we are HOPING to make it to and then all five kids are going to visit my parents for the weekend to give Tim and I a little chance to breathe and catch up on things.

Are you tired yet?  I am.  I could sleep for a week after this day, I think!  So grateful for friends who can watch our other kids during these long days so I know they are well cared for.  While they know sort of what is going on, I think it feels more like a big adventure to them.  Children are so naturally innocently hopeful, I don't believe they aren't burdened in the same ways by bad news.

As always, we can learn a lot from them.

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5 comments :

My Boys' Teacher said...

I'm so glad you were able to walk away from some positives today. Your story reminded me of this one (similar situation):

http://www.afterthemiracle.com/IsabellasStory.html

Marisa said...

Sounds like you have a pretty supportive team you are working with. I'm glad to hear that things have moved past the moment to moment stage!

Heidi said...

MBT- That is a beautiful story and yes a very similar situation! Thank you for sharing it :)

Jessica said...

Praying for all of you!!!!

Abbie said...

Sending prayers and warm hugs for all of you during this challenging time!