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The things I shouldn’t know

Wow – where is this year going already? February….craziness.  February means some planning needs to start.  March for Babies is less than three months away. Team Roo will be walking for its eighth year.  We got our mailer today reminding us to register and get going.  It made me stop and think.   How do we keep going? How do we keep asking friends, family, acquaintances to donate? What’s the impetus? Ryley is 11 years old.  For all intents and purposes, he is a normal, healthy, happy boy.  Does his story still even have any impact? And why do we continue to even talk about what the March of Dimes has done for him when his need is not urgent, his story not new? We are so far removed, and yet we aren’t.

No amount of time will undo what happened to me, to Ryley, to our family.  My life is touched daily by his miracle, by friends that I only know because of Ryley’s prematurity, by the struggles the children of those friends still face each and every day.  I am changed, and that will never change.  Most people, when they hear someone is pregnant, are joyful and hopeful.  I am those things, but I am also scared.  I find myself half holding my breath until I hear they have safely delivered a healthy, full-term baby.  That fear is not “normal”.  So this morning I was thinking about other things, other ways I have been changed by Ryley’s early birth, and I started mentally listing all the things I know that I wouldn’t know were it not for his prematurity.

Magnesium Sulfate – I know that it is used to help stop contractions. I know that it burns like fire rushing through your veins. I know that it slows down your brain functions, your ability to focus, your ability to carry on rational conversations.

Steroid shots – I know these are given if premature delivery is expected in order to help the baby’s lungs develop sooner so he/she has a fighting chance.

Viability – I know that – at least 11 years ago – the edge of viability is 23/24 weeks of pregnancy. I was 23 weeks and 4 days pregnant when I started bleeding.  I was told I needed to keep the baby in at least three more days or they would not resuscitate.

Surfactant therapy – Surfactant is an artificial soapy substance administered to preemies to help their sticky, undeveloped lungs stay inflated so they can breath.

Ventilator, CPAP, nasal cannula – life-saving machines without which Ryley could not have survived.  Preemies are not ready to breath our air.  Their brains don’t remember to breath. Their lungs aren’t prepared to breath.

ROP (retinopathy of prematurity) – Due to the high-oxygen environment preemies must live in, sometimes the sensory retina is replaced by fibrous tissue. Vision can be lost, surgery may be required. It’s a constant game played in the NICU – keep oxygen levels high enough so the baby can breath and function, but not too high, and not too long because of the possible side-effects. Fun, huh? Ryley somehow escaped ROP, as well as potential hearing loss. The eye exam in the NICU to check for ROP is one of my worst memories of our NICU stay.

PDA ligation – Many preemies are born with holes in their hearts.  Sometimes these close on their own. Sometimes medication is required. Sometimes surgery is necessary. We escaped this one too.

Brain bleeds – Extremely common in preemies. Ryley had a Grade I/II bleed on the left side of his brain, which resolved on its own.  Bleeds go up to Grade IV. Sometimes shunts are required to drain. Sometimes you don’t know the extent of damage done by the bleed until years later.

NEC (Necrotizing EnteroColitis) – Per answers.com: Necrotizing enterocolitis (NEC) is a serious bacterial infection in the intestine, primarily affecting sick or premature newborn infants. It can cause the death (necrosis) of intestinal tissue and progress to blood poisoning (septicemia).  That’s the definition. What I know is that NICU nurses and neonatologists are constantly on the watch for signs of NEC, and that when you  hear those letters while in the NICU, fear abounds. I have too many friends whose babies have died or suffered severely due to NEC.  We escaped this one too.

Chronological age vs corrected age – When preemies are born, you start counting chronologically, but they’re technically still in the negative. Their development is behind for how long they’ve been out of the womb. Ryley was born just over three months early.  But when he was three months old, he looked and acted like a newborn, thus his “corrected age”  was three months younger than his chronological age.  We talked about his development using his corrected age until he was about three or four, when the proverbial *they* say preemies are “caught up.”  Ryley really wasn’t caught up completely until he was about six or seven.  I no longer minus three months from his chronological age, but there ya go.  So if you hear someone talking about “corrected age”, that’s what they mean.

High Tone – preemies are prone to cerebral palsy. We had a home health nurse at the house every other week for the first three months Ryley was home, then once a month until he was a year old, then once every other month, etc.  He was continually checked for numerous developmental indicators. When he was about three months old corrected, he had “high tone” on his left side.  His muscles were very tight on that side.  We did physical therapy with him for a few months, and he worked out of the high tone.  Whew!

Early Intervention – In addition to the home health nurse, Ryley also had a specialist from Regional Center checking up on him.  More developmental evaluations making sure he was growing and meeting milestones as expected. First we found the high tone, then later we found he was mildly speech delayed. We took advantage of the early intervention services offered to get and keep Ryley on track as far as development was concerned.

1 in 8 – That is the statistics of babies born early in the US. I also know that we have the highest rate of prematurity among developed countries.

Brady/A’s and B’s/apnea and bradycardia – Babies at born too early are not ready to breath on their own.  Their little brains often forget that they have to breath and so they stop breathing. Their heart rates drop.  All kinds of alarms on the machines surrounding them go off. Probably the worst experience of my entire life, which was repeated more times than I can count while Ryley was in the NICU, was watching him turn completely grey and hearing those alarms.  I learned how to stimulate him to try and bring him back. Sometimes that worked, sometimes it didn’t.  It’s an awful thing to watch your child stop breathing.

I’ve also learned that you have to add all this vocabulary to your blog program dictionary because it doesn’t recognize them.

This is in no way a complete list of all the things I’ve learned, and only a few of the reasons why I feel fear when I find out a friend or family member is pregnant.  I know too much of what can happen. I know too much of what can go wrong. I know what happens when things do go wrong.  And this is just a short list of the why behind our family still supporting the March of Dimes.  Ryley changed us.  We hope that what we’ve learned through our experience can help someone else.

 

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