Nothing for granted

Yesterday, I celebrated the second anniversary of Peter’s NICU discharge, the happiest day of my life.  I wore my sparkly new t-shirt (“Ask me about my preemie”), but other than that, I didn’t do anything special.  I did think about the baby that I brought home two years ago.

I remembered how my heart raced and tears of joy blurred my vision as I walked into the NICU for the last time.  I remembered how big Peter seemed compared to when he was born; at, 5 lbs, 5.6 oz, he had exactly doubled his birth weight.  Nonetheless, when we strapped him into his car seat for his first car ride, he looked so small in it; we had to pull the straps to make them as short as possible.  I wanted to share my memories with someone yesterday, but at the pharmacy, there was no one who could really understand how amazing it is to finally bring your not-so-newborn home after 73 days in the hospital.

When I brought Peter home, I was certain that I would never take anything about him for granted – every breath was a gift, every moment I held my baby in my arms safe at home was precious.  I still wasn’t sure what the future might hold for us, but the developmental therapist at the NICU was very encouraging, so I was optimistic.

One year after Peter’s NICU discharge, he started walking.  Twelve consecutive steps on 9/24/2011 made it official: my baby had become a toddler.  He only had one word (“uh-oh!”), but he used it well.

Now, two years post-discharge, Peter has a whole bag of tricks.  Never mind walking… that boy can run.  And climb.  And jump.  And identify all the letters of the alphabet with their name and the sound they make.  And recognize numbers 0-20, 30, 40, 50, 60, 70, 80, 90, ONE HUNDRED!!!!  And sing, “Twinkle Twinkle Little Star,” off pitch but with great enthusiasm.  His major achievement this month has been speaking in choppy but novel 2- and 3-word phrases.  (He’s been saying, “How are you?” for quite some time, but that was a memorized phrase rather than a new amalgamation of words.)

Miraculous as these achievements are, I fear that I’m starting to take them for granted.  I no longer worry that Peter will stop breathing or that a case of RSV will land him in the hospital or that he won’t hit his milestones on time.  I’ve come to expect that he will grow into a healthy, inquisitive little preschooler.

Days like September 24th remind me that even now, Peter’s good health shouldn’t be taken for granted.

Yesterday I ran across an article published in the American Journal of Obstetrics and Gynecology titled, “Neonatal mortality by attempted route of delivery in early preterm birth.”  For most people, the most insightful take-home message from the article is that for cephalic babies born at 24-31 weeks gestation, vaginal delivery is not associated with worse neonatal outcomes compared to cesarean delivery.  In other words, prematurity by itself is not an indication for cesarean delivery.  For me, though, the most interesting statistic was that for babies born at 24-27 weeks gestation, planned breech vaginal delivery fails (i.e., the OB resorts to c-section after a failed trial of labor) 72% of the time and triples the risk of neonatal death.  In the cohort study, the mortality rate for babies born at 24-27 weeks gestation attempting a vaginal delivery was 25.4%.  Even for the cohort of babies born at 28-31 weeks gestation via attempted breech vaginal delivery, the mortality rate was 6%.  All I can do at this point is thank our neonatologists for saving Peter from the fate of the 25.4%.

Another thing I learned by reading that article is that preterm labor is not the leading cause of preterm delivery for babies born at <32 weeks gestation.  It is the leading cause of preterm birth in general, but for the early preterm deliveries included in this study, medically indicated deliveries (e.g., preeclampsia, fetal anomalies, or nonreassuring fetal status) accounted for 45.7% of deliveries, pPROM accounted for 37.7% of deliveries, and preterm labor accounted for only 16.6% of deliveries.

To summarize, I fell into the small statistic on several accounts:

1)  I delivered an extremely preterm infant due to preterm labor.  Preterm labor is not uncommon in the world of preterm birth, but delivering before 28 weeks because of preterm labor (and not pPROM or cervical incompetence) is unusual.  No wonder all the medical professionals assumed that I wasn’t in active labor up until a few seconds before Peter came sliding out my uterus.

2)  I “successfully” delivered my breech preemie vaginally.  Who would have thought that only 27.6% of women at 24-27 weeks gestation succeed in this endeavor?

Thankfully, Peter can be grouped with the 74.6% of babies born via attempted breech vaginal delivery at 24-27 weeks who survived, but I’m still left thinking about his low Apgar scores, badly bruised legs, and scary placenta examination report.  Thankfully, I didn’t see the placenta examination report until I was 6 months postpartum.

The report had four main findings: acute subchorionitis, focal villous edema, an abnormally short umbilical cord, and an umbilical cord with about half the typical coiling frequency.  The diagnosis of “acute subchorionitis,” I’m told, is not particularly revealing – it’s a typical finding in placentas delivered at Peter’s gestation.  And the finding that Peter had a short and hypocoiled umbilical cord just makes sense to me; he didn’t have much room to somersault in my oddly-shaped uterus, and reduced fetal movement is associated with short, hypocoiled umbilical cords.  The scary finding, though, was the “focal villous edema.”  Here is what I was able to learn about this condition:

Villous edema is a condition … characterized by individual swollen, edematous villi. … The cause of focal edema is not  understood.  In cases of villous edema, especially that associated with preterm delivery, there is an extremely high incidence of stillbirth, neonatal death, and neurological abnormalities, as well as a high incidence of motor abnormalities and severe mental retardation at 7 years of age.  It may be associated with chorioamnionitis.  It appears to be caused by fetal hypoxemia.

That, my friends, is not a paragraph anyone wants to have associated with their preemie’s medical record.

But thankfully, Peter is not dead, mentally retarded, or physically handicapped at the present time.  To my knowledge, at least.  Sometimes I wonder whether Uncle Sam knows more than I do.  It has been nine months since Peter’s SSI payments were discontinued (because I didn’t fill out the forms required to continue his payments because I knew that Peter should not qualify to continue to receive monthly SSI payments because he is neither living in an institution nor with a low-income family and he is not considered disabled by his doctors), but I just received a notice from the Social Security Administration stating that Peter’s “regular monthly check of $30.00 will be sent to you about the first day of October 2012.”  I’m not even sure what to make of that.  Either the people who handle SSI at our local SSA office are mentally retarded or I am.  If a check arrives on October 1st, I guess I’ll give the office yet another phone call to let them know that they really don’t have to keep sending me money…

Anyhow, I think it’s time for some happy photos.

9/24/2010 – 5 lbs, 5.6 oz:

9/24/2011 – 19 lbs:

9/24/2012 – 25 lbs:

9/24/2012

As you can see, life just keeps getting better and better!

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2 Responses to Nothing for granted

  1. I know exactly how you felt leaving the NICU. I sat by that isolet for weeks waiting for that moment after watchnig my son’s apneic and bradycardic episodes. When Hunter passed the car-seat test, I left and never looked back, until I had my second preemie! lol Hunter is now 13 and Wyatt is 11. When I went into labor at 27 with Hunter, I really wasn’t sure if he would live or have handicaps. I have done my own research over the years as to what to expect developmentally with a preemie and the causes of preterm labor. We have been so very blessed, and I never forget it. I will never know why I had the preterm labor. The first preterm labor was a shock and since they didn’t know what caused the first gave me a 50/50 chance with the second. I went to labor with Wyatt at 19 weeks. My specialist did help me via bedrest and magnesium IV’s. I made it to 34 weeks gestation with him:) He weighed a whopping 6 lbs compared to Hunter at 3 lbs 9 oz at 29 weeks. Thank you for sharing your story. We are very lucky to have our kids!!

  2. Mia says:

    Peter is gorgeous! God bless him! I know I, too, will think about what my little preemie has accomplished when a year then 2 is up. I’m already doing it now that he turned 3 months actual. 🙂

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