Tuesday, December 13, 2011

Thrown Back Into the Pile

(A follow-up post from a Post-NICU Mama)

In a gushing burst of love for little "mystery" Benjamin (my kid's nickname for their youngest sib) I scheduled a sonogram for this Thursday. I did it solely to let my husband see an early outline of his little one's face. This was a huge deal for me. I tried to explain to my husband all my conflicting emotions with my first pregnancy after a NICU baby. They are mostly not good.

I mean, I love this new kid. I prayed for him (or her). I'm okay with doing general routine maintenance during OB appointments--testing my sugar, etc.

But I'm so NOT cool with doing a sonogram.

It's like, the bloom is off of the rose.

Not only did I have a kid with a fatal birth defect who passed her sonogram--I had a kid who PASSED all her physicals with flying colors for the first SIX DAYS of life. I think I truly passed the 10 mark of pediatricians who all said that my Tess had simple reflux or simple jaundice, all while she was actually dying! (The worse thing for me was that she was under 48 hours of hospital observation from day 4 to day 6 and no one caught it.)

So this whole "sonogram" thing doesn't mean anything to me. I'm not going to believe it if we get an "all clear"--but the worse part, I don't think I'm going to believe it if we get the "all clear" during the next baby's first week of life, either.

The good news is that they don't think that my daughter's birth defect is genetic, which means we have no higher risk of having it again.

The bad news is that they are throwing me back into the pile! Seriously, I have no special tests or monitoring done with this next pregnancy. Which is hard because the technical odds of something going wrong might be the same as pre-Tess, but I'm not the same!

I am not the same Mom.

So, I don't know. Yesterday, I call the hospital where I gave birth to Tess and where I'm scheduled to give birth with baby mystery. I was hoping to get some insight into what screening tests after my new baby's birth to rule out any intestinal or heart trouble. The Pediatric Floor remembered me! Tess left a memorable impression. The bad news is they are not going to do anything. In fact, the perky nurse said "don't worry after any neo-natal testing because if there is a problem they'll catch it in the sonogram."

I said "But they didn't catch Tessy's problem in the sonogram!"

Dead silence on the other end of phone.

Yeah, no help or understanding from the medical establishment. There's no standard protocol As my husband said with forgiveness "Tessy's troubles weren't serious enough to go into automatic high alert status with the next baby, but we also can't go back into in easy, totally healthy baby section either. We're in the gray zone where no one knows what to do with us."

So it looks like it's just Jesus, Mary, and the Archangel Raphael who will be the ones keeping an extra sharp lookout on mystery Benjamin's pregnancy and his emotionally fragile Mama. Which worked perfectly for Baby Tessy's birth.

On the Feast of Our Lady of Guadalupe, I didn't celebrate with any cute teaching moments with my kids. Instead, I tried to more deeply inhale our Mommy's dear promise:

"Do not let anything afflict you, and do not be afraid of any illness or accident or pain. Am I not here who am your Mother? Are you not under my shadow and protection? Is there anything else that you need?"


  1. Even if baby mystery is sick, I'm sure God will handle all things with beauty and grace. He'll be fine.

    You are better off praying for his non-trusting Mom and Dad! :-)

  2. I hear you and understand you...your insights are so true...the grey zone...
    I really do not know why the medical establishment has so little understanding of the grey zone. I really, really don't.

    Prayers for Mommy...that she can breathe in Mary's presence and take it one day at a time with joy and trust and a peacefilled heart.

    You are my hero.

  3. Not anything the same but...with my first son they told us he had a high chance of having down's but I didn't want the amnio because of the risks.

    So we waited. We knew the sonogram saw nothing abnormal, but like you said that doesn't mean much.

    So we waited...I made sure to look him over closely when he was born. He was fine. The only person's who worried themselves to death was us. Course it didn't help that they put that on every stinking form as a reminder that nobody was sure.

    I'm sure things will be okay for you guys too. Don't worry yourselves to death. It's not worth it and will make the pregnancy that much harder.

    Prayers for you.

  4. I hear you!

    Henry is not gaining weight...in fact he weighs 2 oz LESS than when we brought him home as an extremely malnourished 1 yo...

    But I cannot get into the Nutritional Analysis clinic at Children's Hospital until the end of March! And the ped keep saying, "just keep feeding him"...

    I feel like no one wants to help us get to the bottom of this...the cynical of me thinks it is the "well he is disabled child anyway, so as long as there is no crisis things like this are just bound to happen" mindset of medicine...

    Feeling unsettled with you...


  5. Hey...trust the experiences that God has given you. You have 3 with no problems, and one that was caught. You knew there was something different with Tess before any doctor told you so. (Kate was the same way.) When your new precious comes along, love and dawdle over him/her as any mother would do over her newborn. Watch how she nurses, how she sleeps, how she feels, and God will tell you what you need to know. You'll be a bit trigger-happy: any sign of weirdness, and in she goes to the pediatrician, but that's okay.

    Trust that God will give you the knowledge that you need.

  6. "So it looks like it's just Jesus, Mary, and the Archangel Raphael who will be the ones keeping an extra sharp lookout on mystery Benjamin's pregnancy and his emotionally fragile Mama."

    Them and everyone else who is praying for you. Like me. I'll be keeping you in my prayers.

  7. Praying for Baby Mystery ( I love his name Benjamin!!! :) and for his parents too. I cannot imagine the nerves you must be dealing with, keep those words of Our Lady of Guadalupe close to your heart!

  8. Thank you guys!

    I'm feeling much better about the sonogram tomorrow. Sometimes it helps just to write out your "crazies."

  9. Thank you for all of your prayers. Everything looked good so far on the sonogram. They are going to refer me to a perinatologist just to double check things in second sonogram sometime in the future.