HELLO, NORAH.

THOUGH SHE BE BUT LITTLE, SHE IS FIERCE.

#10 // I hate marathons.

Our StoryJoanna ZuidemaComment

Time for our first marathon appointment. I even packed snacks, guys. We were the definition of prepared.

Or so we thought.

Fair warning - this is the longest appointment, so it has the longest post. 

Here we go.

1. Private tour of the Mother Baby Center

I have a tendency to get really anxious in hospitals. This is one of the reasons the birth center appealed to me; its homey interior immediately put me at ease. The MBC, however, has a stunning modern interior which is vastly different from the classic, stale interiors of hospitals in my past. Being a highly visual person, the attention to detail in everything from the architecture to the interior design to the handouts we received put me at ease in the same way the the birth center's homey interior did – it was thoughtful, not stale, and I wasn't afraid.

On the tour we learned a little more about what to expect during my labor/delivery:

  • I’ll end up in four rooms over the duration of the birth: A labor room, OR for delivery, a recovery room, and then my private room for the remainder of my stay. I need to deliver in an operating room not for me, but for Norah. The ORs have special NICU units attached to them that they will whisk her into immediately after being born. 
  • The MBC is quite knowledgable and supportive of natural birth, even in a high-risk situation. I should be able to incorporate a good portion of what I had initially hoped for in my birth experience, just modifying it a bit to accommodate specific medical needs.

2. Transfer of care/ OB/ Non-stress test

Grad school? Nope. Just a high-risk pregnancy.

Grad school? Nope. Just a high-risk pregnancy.

After the tour came the official transfer of care appointment. It was quick, but held a lot of weight as I was officially saying goodbye to my full natural-mama birth center experience. *takes off floral crown and steps into reality.*

We also received a stack of information that could easily compete with any college course. #TheFinalExamInvolvesWHAT?

After going through the standard OB prenatal checkup, we moved on to the non-stress test. The test involved straps wrapped around my belly, hooked to a machine to monitor Norah’s heart rate and movement along with any uterine activity.

While I couldn't see the monitor, Lane had a clear view and quickly figured out the readings. He even informed me when I had a contraction, which was such a hilarious and backwards moment. The contractions I had were Braxton Hicks contractions (practice contractions that strengthen your uterus in preparation for birth without causing any progression), and I couldn't feel them at all.

The monitor also had an audio feed playing her heartbeat the whole time. Norah was moving so much that the monitor was having a hard time keeping track. When she moved, which was often, it sounded like someone dropping, no, throwing a microphone into a ball pit. She sure kept the nurse laughing with all of her not-so-subtle interruptions.

I apparently was showing some 'uterine irritation'. Seems fitting. Honestly, if you were tasked with having to contain all the spunk and energy that is Norah Mae, you'd be pretty irritated too.

After reviewing Norah's movements and corresponding heart rates, the nurse happily said "this is more than I would expect from a 30 week-er."

We couldn't help but smile. There is no doubt in our mind of Norah's strength. The medical staff are always surprised, but we have known the whole time that she's a fighter.

3. Biophysical / Anatomy scan

We met Dr. T, another perinatologist, after the non-stress test. (MNPP ha you meet with multiple different doctors over your visits so that you not only have multiple minds working on your case, but you'll hopefully then have a familiar face at delivery.) We did a quick touch-base before heading into the ultrasound room for the biophysical and anatomy scans. Dr. T would be reviewing the ultrasound in a seperate room, coming in afterwards to follow up.

As per usual, Norah made the sonographer work for it. Norah was having none of it when the sonographer was trying to get a good image of her hands. Like I've said before, she will only let you see what she wants you to see, when she wants you to see it.

When Dr. T joined us afterwards, she told us that while she was happy there had been some growth since the last appointment, Norah was still measuring small. She didn't see anything new, which was also good. We agreed when she offered to walk us through her findings, figuring we knew what to expect.

Her heart, omphalocele, and spina bifida opening still looked the same.

Ok, great. We expected that. 

Then she started in on information that was evidently not new to her, but was definitely new to us. 

Going head to toe:

  • Norah's brain is developing abnormally. The divider between the hemispheres should be straight and hers is wavy. This would likely cause severe developmental delays. We knew there was some sort of abnormal brain development, but it had never really been specifically addressed.
  • Her eyes are developing abnormally. We were told they looked small before but that it could be related to her small head size. Now we were being told they were in fact not developing properly.
  • Her pinkies have some sort of tissue growth on the sides of them. With Norah's lack of cooperation with the sonographer, I question whether or not this was clearly seen, or if it's more of a guess.
  • Her kidneys are enlarged, have some fluid in them, and one has a cyst. Again, we had heard vague mentions of her kidneys being 'a bit large' but it never appeared to be of much concern.
  • Her feet appear to be swollen and turned in, making them think they might be clubbed. This is something that could be managed through bracing. It was also mentioned in the non-committal, 'it appears that it could be....', manner. Not as fact. 
  • Because of Norah's small size, they are a little more concerned with her ability to handle birth — a c-section may become necessary.
  • I am at the upper levels of normal for amniotic fluid levels, making them concerned that Norah isn't swallowing properly and that those muscles may not have proper tone. Let me be clear – I am at the UPPER LEVELS OF NORMAL. Meaning I'm STILL WITHIN A NORMAL RANGE. Normal anything is incredibly rare for this pregnancy, so the fact that being within a normal range was presented to me as a concern legitimately made me upset.
  • Because of all of the concerns with Norah, I'm at a higher risk for preterm labor and will need to come in for twice weekly assessments for the remainder of the pregnancy. The goal is to make it to 39 weeks but we'll be balancing any concerns within the womb with her ability to survive after birth.

Yep. We were completely overwhelmed.  And our appointment wasn't done.

4. Cardiology

Dr. R with his enjoyable accent and wonderful bedside manner were very welcome after the last blast of information. We did another detailed ultrasound of her heart and he still clearly saw Tetralogy of Fallot. The only piece of new information here was that Norah's pulmonary artery appeared bigger and more open than they thought, which is a good thing as it means less work during surgery.

 

At this point we had been in appointments for four straight hours. We were completely fried from information overload and were processing the huge bomb dropped on us during the anatomy scan. We both probably looked like zombies as we walked to our consultation with the Neonatologist and social worker. 

Because yes. What's one more appointment?

5. Neonatology/social work.

A neonatologist is essentially a pediatrician with further education and specialty in high risk cases. Ours was wonderful and clearly understood we were overwhelmed, so she kept her overview brief.

  • There will likely be 4-5 medical personnel in the OR just for Norah, in addition to 3-4 there for me, not including Lane and our doula who will also be present. #partytime. While its not quite the intimate experience I had dreamed of, we are beyond grateful that Norah will have a team ready and waiting for her when she decides to make her debut. Knowing her personality already, a grand entrance seems only fitting.
  • They will try their best allow us to hold her briefly before having to take her, but with all the concerns, it's not guaranteed.
  • She will be more blue than most babies due to her ToF.
  • Lane will stay by her side as soon as they take her from us.
  • After confirming her heart function is stable, she will need two surgeries within 48 hours of birth – the first for her spina bifida, the second for the omphalocele. There is a possibility of both happening in one surgery, but we won't know until she's born.
  • The neonatologist predicts she will be severely effected in terms of developmental delays.
  • Her NICU stay will be no shorter than 3 weeks, but could last up to 4 months, or more.

The neonatologist had a ton interesting information to share, but we were both just completely burnt out. By the time it was the social workers turn to chat, it was obvious we were done. 100% burnt out from information overload. Thankfully, they recognized that and cut it short. Our NICU tour and chat with the social worker was moved to our next appointment.

#informationoverload.

#informationoverload.

Finally, 5 hours after it started, the marathon was done.

As we were zombie-walking to the car, Lane said, "Wouldn't it be nice to get some good news for once?"

 

Yep, I hate marathons.

 

Continue the story > #11 // The Debriefing