I spoke too soon

Today is a day that I just had to laugh.  Despite the seriousness of the situation, and that fact that our child's life hangs in balance, I simply don't know what else to do.  So, I laugh. I think if I started to cry, I simply wouldn't stop.

Today one of the MFM doctors (whom I met with yesterday) came in to discuss the pregnancy with me (their rounds as you would call it).

She went over a few things regarding some of the things we discussed yesterday. It doesn't look like my membrane ruptured (water broke) as I first thought as a possiblity since the bleed was watery looking to me (I expressed my concern when I arrived at the hospital).  All good on that front.

We quickly discussed my current hosptial stay, bleed free for 48 hrs and I can leave again (but cautioned that 3 strike rule applies and next bleed I'm here for the duration).  That said, its looking like the duration may not be far in the future.

The ultrasound yesterday suggested that we may be dealing with another complication (seriously folks, I'm not making this up...this is all truely happening to one baby within one pregnancy).

Today's 'soup de jour' is IUGR or InterUterine Growth Restriction.

Now, its not confirmed, simply suspected at this time.  Up till now Payton has been doing well with her growth and one isolated ultrasound measurement isn't enough to raise too much concern.  It could simply be a 'mistake' or we could have fallen on the wrong side of the margin of error or poor positioning of the baby (though one would assume that measurements due to position would error on the side of too big).

Regardless, its too soon to freak out.

To give a bit of background on how they determine IUGR:

They measure the circumference of the abdomen. They measure this because when IUGR presents itself (ie lack of enough nutrients for proper baby growth) the baby's body automatically re-routes what nutrients are available up to the most important place, the head.  So including the measurement of the head wouldn't present an accurate picture.  By the time the head begins to be affected in growth due to IUGR its severe.  After the head its the rest of the body that recieves the nutrients, so measurement of the legs are equally ineffective for comparison.  The abdomen is the 1st body part affected and developmentally restricted due to IUGR.

Now, like me you may say "wait, with CDH wouldn't her abdomen measure small anyway??" Apparently, they do, just a little but properly developed CDH babies hold their own in abdomenal circumference. Payton herself was measuring just fine up till her last growth scan (yesterdays).  Thus, she severely fell off the growth curve with her abdominal circumference thus triggering the IUGR alarm.

Yesterday's measurement put Payton in the 4th percentile for abdominal growth.  Up till then I believe just sat just under the 50th percentile (she was always a couple days behind).  Anything that drops below the 10th percentile is classified as mild IUGR.  Below the 5th percentile its classified as moderate and below the 1 percentile its severe.  So while we still sit at the 4th percentile, we don't know if its inaccurate (and she's higher) or whether she's on her way down to below the 1st percentile and we just caught a window of time where she was in the 4th.

Now, I'm sure your asking what that means in the whole scheme of things (ie management)...because yes, this is another pregnancy complication that isn't overly common.  But, it is another severe complication that requires drastic measures if indeed it is an issue (and not simply an ultrasound mistake). 

As far as management is concerned, we'll have ultrasounds and Non-Stress Tests (NST) 2 times a week.  Since they are unsure what could be causing the restricted growth, they'll measure things that may raise a red flag causing the need for instant delivery. 

These frequent ultrasounds will measure the blood flow in the cord and placenta making sure that the blood is flowing appropriately.  They will also measure the amniotic fluid.   All this time we've been worried about too much fluid, but now with IUGR, too little fluid is a huge concern.

Since they don't know if the suspected IUGR is due to the placenta previa (common with PP since the placenta sits on the bottom of the uterus, where its not supposed to be, and because its much thinner at the bottom, it may not draw enough nutrients to the baby), or the 1st bleed (a partial abruption where the torn away placenta bled but also resulted in not enough nutrients being carried to the baby) OR it could be due to the CDH (baby's internal organs are pretty jarbled thus her kidneys may not be properly working).

On some degree, it doesn't matter the why's, it simply matters with the results.  If one of the frequent ultrasounds shows that the blood flow is affected, or the fluid becomes dangerioulsy low, then they may make a discision to deliver asap.

With the NST - they want to make sure baby's heart is beating strongly (IUGR can affect that and may present itself during a NST where the heartbeat severly drops).

At the 2 week mark from yesterday (when we had the measurements done) they will once again measure Payton's growth.  If she's showing improvement in her growth we'll keep trucking. If indeed its deemed she's being affected by IUGR we likely will deliver at that point (estimated as 34 weeks 3 days). 

Babies who are expressing IUGR (and it goes untreated via delivery) too often end up born still.  Its worth noting that the risk of stillbirth with IUGR will definitely outweigh the risk of death caused by Paytons diaphragmatic hernia thus, for me, its a wake up call as to how precarious a line we may be walking with this new develpment.

I'm hoping if it looks like we need to deliver due to IUGR that the situation isn't too severe and they allow us to get to 35 weeks gestation, since that's the gestation we need to get to in order for Payton to be a candidate for ECMO (especially when dealing with prematurity in conjunction with CDH).

For now we wait and we once again take stock in how lucky we still are.  We still have a baby who has a chance to fight and that's all we're asking for.