A long day leads to a plan

We left the house in a bit of a hurry yesterday.  We had three appointments- first the local pediatrician, next an ultrasound with my primary MFM and last a meeting with a neonatologist.  Plus we had to go to the post office and drop off a gift for my nonprofit (averymerrybirthday.org).  I kept forgetting things (placenta brain is a real thing) and sending Chris back upstairs to grab them.  Finally out of the house, a few minutes away from home, I realized I forgot my hospital ID, which wasn’t necessary for the appointments, but would make getting around a lot easier.  Chris helped ease my frustration by telling me he left the house in his slippers!  I spent the rest of the day giggling whenever I looked at his feet.

 

I went into this day with some optimism.  I was excited to come up with some sort of plan.  And, I knew it was unrealistic, but I think I was hoping the ultrasound would give good news and the neonatologist would be able to give us some more tangible ideas of what to expect.  In my head I knew these hopes were unrealistic, but in my heart, the hopes lived.

 

Our first stop was with a local pediatrician.  Her group came highly recommended by many people in my community- OBs, nurses, midwives.  And when we walked through the door of the office, there was a midwife from another practice with her child for an appointment. I took this as a good sign.  We liked the pediatrician- she was knowledgeable, experienced and honest.  After going over all of our baby’s issues and the problems we face- she asked us “are you sleeping?”  Good question.  I find that pregnancy has allowed me to fall asleep much more easily, but my own witching hour comes between 4am-6am.  Lots of tossing and turning and some dark thoughts.  I appreciated her recognition that our situation is hard.

 

What we got out of the meeting was 1) This doctor knows Down Syndrome and 2) We shouldn’t move.  Our little town in CT has many strong services for special needs children.  Lucky for us we don’t have any plans to move anytime soon.

 

We then moved on to our ultrasound.  Our MFM doctor proposed a new theory on what has been going on with our baby’s kidneys.  The kidneys have sopped working for what appears no reason.  More commonly babies with Down Syndrome have issues of obstruction and water back up on the kidneys.  One theory she proposed is that at one point there was an obstruction and the fluid backed up in the kidneys so much that it completely damaged them, so they shut down.  We just missed seeing it on ultrasound.  This theory doesn’t change our management.  It wouldn’t have been something we could have changed had we seen it in action.  But working with that theory, the kidney issue can be associated with Down Syndrome.  I like reasons.  They help me cope.

 

There is no fluid.  We are back down to “anhydramnios.”  Which in the OB world is not much different from “oligohydramnios,” or low fluid.  I had a dream earlier this week that there was more fluid, so it was especially disappointing.   But it just amazes me how much this baby moves with no swimming pool.  The sonographer was commenting how she needed the baby to move to get another view and you better believe our baby kicked her probe.  All that choline and exercise has been paying off with brain development.  Look at our baby go 🙂

 

We also talked about monitoring and delivery.  Deciding on when and how to monitor our baby isn’t a simple decision.  We monitor because there is an increased risk of stillbirth with the low fluid.  Monitoring would hopefully give us early signs of distress and if they weren’t fixable, we would deliver the baby, hopefully before stillbirth.  So by committing to monitoring, we are saying we are comfortable with delivering the baby If need be, and possible urgently (ie by c-section).   Two things to consider: how early delivery would affect my health and the bay’s prognosis.  Chris and I both agree that we want to avoid a classical c-section, which could affect my future fertility and we think we’d be confidently out of that period after 32 weeks.  We are also weighing the effects of prematurity on the life of our baby. Delivering too early might be life threatening for our baby as well (more difficulty breathing, smaller kidneys, neurological effects).  We talked with our MFM about starting monitoring between 34-36 weeks (depending on information we got from the neonatologist).  Monitoring would mean admission to the hospital and monitoring the baby’s heart rate continuously until delivery- at 37 weeks.

 

With that plan tentatively laid out, we moved on to the neonatologist.  We had the lunch hour to kill before our meeting, so I introduced Chris to “the carts” at the hospital- 20+ food carts from local restaurants who set up shop midday outside the hospital to feed its hungry working masses.  You can get Ethiopian, Vietnamese, Indian, Italian, Chinese and so much more.  We also stopped by Labor and Birth to say hi to some of my colleagues who I haven’t seen in a month since I stopped doing call shifts.  It gave Chris a chance to see Labor and Birth as well.

 

Finally we met with the neonatologist, who spent a long time discussing our case and showing us the Newborn Special Care Unit.  In short, he is “very worried” about the state of our baby’s lungs, which could be hypoplastic.  We discussed the likely need for ventilation and how they determine whether it’s working.  It’s possible that our baby might not respond to ventilation.  It’s also possible the baby might respond initially but may never be able to wean off a ventilator, meaning the lungs would never function on their own.  Breathing is the first thing a baby has to do.  If baby responds to ventilation and is doing ok, then we can focus on kidney function by monitoring urine output and blood chemistries.  If baby’s kidneys aren’t able to function, we can always use dialysis with an end result of a kidney transplant.  But our sick little baby may or may not be a candidate for transplant.  Every further intervention must be weighed with how the baby is doing.  The neonatologist said it well: there is no reason to spend lots of time and energy repairing a flat front tire on a car, if the back tire is completely unusable.

 

We discussed how prematurity can impact lungs and kidneys.  In healthy babies, kidneys reach their full maturation at 34 weeks.  In healthy babies, RDS (respiratory distress syndrome) is rarely an issue after 34 weeks.  In the OB world, we start managing pregnancies differently at 34 weeks- we deliver if you’re water’s broken, we stop monitoring for preterm labor, we don’t stop preterm labor if it happens.  34 weeks seems like a magic time- a time we’d be willing to intervene, because the baby would have a chance.

 

We talked about difficult things- when to stop ventilation.  Comfort care.  He showed us a room where we can hold our baby in private as s/he take his/her final breaths.

 

We talked about taking it day by day and keeping us in the decision making process.  Though we talked about the hard stuff, it was important.  And it wasn’t all bad.  We will ventilate the baby in hopes s/he will breathe.  We will check the kidneys in hopes that there is some function.

 

I want to be as clear as I can.  Chris and I are very committed to this baby.  We want nothing else but to take this baby home and raise him/her.  But that might not happen.  We want so badly to make the right decisions to either help our baby live well or pass with little pain.

 

In the meantime, I carry this baby close to my heart, literally and figuratively.  I hope to stay pregnant another few weeks to get to the point where we feel this baby has a chance.   I hope and I hope my baby will choose to stay with me until then.  34 weeks, kid.  Make it til then and we’ll watch you like a hawk and try our darndest to get you to term and see your face.

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5 thoughts on “A long day leads to a plan

  1. Thank you for the update. What a day! I remember meeting with all the doctors/experts and how helpful it was to understand everything we could our baby’s condition and the best and worst case scenarios. Abiding with you as you wait and hope. My husband used to say, when I was carrying Molly, “prepare for the worst, but hope (and pray) for the best.” Sending you, your husband and your precious child much love, peace, thoughts and prayers. You can do this! One day, one hour, one step at a time.

  2. Hi Mallory –

    I clicked over to your blog from Roo’s with special interest, and this post especially was good for me to read. I’m a genetic counselor and work partly in the prenatal field. One of the hardest but I think most valuable parts of my job is discussing the myriad of “ifs” that come along with a special delivery like yours. I’m glad you and Chris have been able to have those discussions as well. There’s so much that’s beyond a parent’s control during pregnancy and in those first few minutes/hours/days that being able to have some say about planning before go time seems to bring some comfort and peace. I imagine this is especially true for a medical professional who knows more than the average patient. I’ll be thinking about all three of you as your pregnancy moves along – fingers crossed for 34 weeks!

  3. You are already great parents. You are totally in love with this child and doing everything in your power to provide that child all that is necessary for a good life! Hang in there and know that you have done all that you can! We will continue to pray for your family.

  4. Pingback: Frozen | Expecting the Unexpected

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