First Pregnancy Nightmares Turned into Miracles: My Little Preemie

I'm not a daddy blogger.  I don't write about the adorable things my daughters do on an everyday basis, or my disciplinary successes, or about the three times I woke up last night pacifying bad dreams. While these events are big in my own life, I feel like the majority of people see enough of these overshared parenting tidbits on their Facebook status updates on a daily basis. I hope my children are good little people, but it doesn't mean much if they end up rotten apples in the long run (so I'm holding off on giving advice).

But one story in the news recently made me re-remember a difficult time in the life of my wife and I. The story in the news is of a little girl who was born with her heart outside her body, an 8/1,000,000 rarity, with 90% of those babies dying. I can't image what that would be like. In this current story the baby is doing well, post-multiple surgeries, and just got to go home (albeit with a protective chest case). It's a really nice story. But the medical expert said something that brought back the nightmares for me.

I'm paraphrasing him when I say, "the family had three options when they discovered the abnormality at 16 weeks; terminate the pregnancy, birth the baby and give it "comfort care" until it passes, or agree to extensive and expensive surgeries that still might not save the baby."

The "terminate the pregnancy part" is what stuck with me. My wife, Jill, and I heard those words 11 times in the hour & a half meeting with some "genetic counselors" that our doctor recommended; this after my wife's quad screen test came back all funky. The results of this test can have many false positives, and since our test numbers were so strange, we were treated as if every possible conclusion was not only a viable, but probable outcome for our child. We suddenly were getting ultrasounds every week, and feeling the concern on every doctor, or aid, or specialist's face we saw. Later, as other symptoms arose, the word preeclampsia was thrown around, and suddenly our first child, Jill's first pregnancy, became a little less than fairy tale-ish, it got real, and scary.

Jill's blood pressure continued to go up, as well as her swelling. Our doctor was smart enough to know that bed rest at home was not a possibility with my more than active wife. So Jill was hospitalized as a precaution. We thought it would be over night.  Between the sometimes helpful, blunt, rude, and overly nice nursing staff, and a few indifferent doctors, we realized that unless there was some miraculous changes in Jill's body chemistry, our baby was going to come early. Very early.

Our actual doctor finally arrived and said the goal was to get to 32 weeks. Babies who can get to this stage will still be small with many challenges to overcome, but do much better than babies born before 30 weeks.  This was not the first time we were told that this pregnancy was not all peaches and cream.

Three weeks earlier, at the infamous "genetic" counseling session we were told of risks of spina bifida, Down's Syndrome, and other lesser known physical and mental disorders...we were told over and over that termination would be "easier" before 29 weeks (or third trimester). An amniocentesis test was also recommended for further knowledge.

Shaken, having our world thrown in an absolute dizzying spiral, my wife sobbing profusely, I found the courage to ask, "what is the danger of this test?" (in the test they insert a needle into the uterus and pull out a small amount of amniotic fluid).

He answered that it induces labor in about 2/300 cases, and rarely causes death to the fetus. Statistically, it was "safe."

We were emotionally exhausted.  90 minutes of shocking information, being told that our baby would probably not make it to term, and that it most likely would have some form of abnormality, and that our lives would be "hell" if we decided to have a baby with a genetic deficiency, I finally threw my hands up in defeat.  

We had emphatically rejected every mention of "aborting."  I said we were having this baby regardless of its implications. Unless there was certain death for my wife, we were not going to terminate the pregnancy.

"Doctor ______, when we came into this session, we were under the impression that there was a 98% chance that everything was fine with our baby. Now it seems like our child could have any number of problems? What are we looking at?"

"Oh, we are talking about a very small percentage. Your odds are actually better than what you thought, more like 99.8% that everything will be fine with your child."

"WHAT!"  We've sat here for 90 minutes listening to you guys preach ABORTION, and there's most likely nothing wrong with our child!? You want us to take a test with a higher statistical chance of damaging our child, just to find out a few weeks before birth if our kid is abnormal?  Are you kidding me? We are HAVING this baby!"

"Well, we're only here to tell you possibilities, and give you options."

"11 times! 11 times is not options, it's coercion!"

"Can we leave, Chris?" Jill whispered between her sobs. The doctors wanted us to stay longer, probably to calm us down or to work through our "confusion" on the matter. I stepped in and, with my arms around my sobbing wife, told her and the doctors, "We are leaving, now."

I wanted to run out of the office, but my wife was in the waddling stage of pregnancy. Still we made it out of there, hastily, without signing any forms or making any other appointments. We had never been so upset or frustrated in our lives. I had never been that close to punching another adult in my life.

"I don't ever want to see that man again," my wife blurted halfway out of the office.

Later, after Jill's forced hospitalization, whenever Dr. ______ was on-call for the mother/baby floor, our nurses refused to let him treat us during our stay there. Like anyone who cares for you kind in a time of need, some of those nurses became like family. By the end of our stay we knew their family histories as well as they knew Jill's medical history. 

We spent the next 11 days in stunned hospital boredom. I slept on two couches pushed together, and we watched tons of television, and entertained visitors, and thought we would get released at any moment. Her blood pressure remained high, and her swelling was pretty outrageous, but she didn't act sick.

Lily reaches out and touches someone (mom), immediately
after birth.  

I actually can't believe she made it a week. She's not good with relaxing in the first place, and forced bed-rest was almost a guarantee of failure.  Eventually her liver and kidney nearly stopped functioning, as the preeclampsia got so bad our doctor ordered, "the baby is coming out today, ASAP."

Long story short. We weren't ready. 30 weeks of gestation isn't long enough.  But it didn't matter. Within two hours, we were the lucky parents to a tiny purple baby. 2.6 pounds. We named her Lily. "She's the size of three apples," as a young cousin named Davis aptly noticed. She was. A tiny little miracle baby.

Jill, still swollen, and drugged on Magnesium Sulfate,
finally gets to see her daughter two days later.  

A week later I finally got to take my wife home. Lily would have to stay in an incubating isolette in the NICU for another four weeks. It's difficult to bond with a newborn baby through a hand portal.  But she was beautiful, and determined to thrive. When her even smaller than normal infant fingers curled around my finger I knew I was in trouble--this girl would be spoiled.

We were allowed to do Kangaroo care for ten minutes at a time. In the neonatal unit, germs are enemy number one. We had to wash in with iodine and other anti-germ agents every visit.  Only close family was allowed to see the our little embryo-like girl. Our family, like her actual parents and nurses, were encouraged to participate in Kangaroo care, which is basically sitting with the baby pushed up against your bare chest.

While isolation, heat, forced food through a tube, and other medical procedures are constantly needed, human touch, bonding with the smells and feel of skin, have been found necessary for the psychological well-being of a newborn, especially preemies.

I worried that this bonding would be lost. Babies need mommy, need to hear daddy. I feared she would be socially disconnected. Not able to feel love. I read a lot about preemie development, and some of it worried me.

Nadia (left) and Lily.  Just another day of dress up fun.  

Flash forward seven years, and Lily is a little princess. She has unlimited energy. Some of the developmental issues are there.  She's still not on the growth charts. She struggles academically. She's a little behind in math and reading, but she puts in extra time during homework, and is nearly at grade level. But she doesn't have any "serious problems."

It's almost a pastime for parents to brag about their kids' amazing performances in music or on state tests or on the soccer field, insisting that their kid is talented and gifted far above normalcy.  Almost like they want to put down any parent whose kid is merely average at all those things. I can't brag about Lily's talents or intellectual prowess yet,  but she does have one amazing quality. Empathy.

We were watching The Odd Life of Timothy Green, and Lily picked up on every detail happening in the lives of these on-screen people.  When the story came to its bittersweet conclusion, Lily was sobbing uncontrollably. She hugged grandma, and then ran to me, and I held her while her heart broke. She does this all the time. She is not emotional, but will cry for the injustices and trauma happening in other people's lives.

This "disconnect" I was worried with, is not there at all. She is a social butterfly. She loves unconditionally. And she's hilarious. Making jokes that crack up adults all the time.

In conclusion, my daughter barely made it to this world. We were told she would have all kinds of serious problems which she doesn't have. We were advised to abort her, which we emphatically rejected. We were told our lives would be difficult, and mostly they were wrong. And while many parents get to brag about some amazing abilities and talents their child possesses, I get to brag that I have a daughter of great character, and I can't wait to see the adult she grows up to be.

Lily's 1st birthday, post-swimming pool.  I'm convinced she is a water dog
because she didn't get enough time in the womb.  

Lily (left) with her newborn sister Nadia.  

Translated by Dad:  "Martin Luther King Jr.'s dream was {for}: all people to be equal"
"My Dream is: that bad people would change so they can love God."
"Here is something I can do to make my dream come true: Pray to God so that if
anybody bad comes to me they wont hurt me."