Today, November 17th, is National Premature Birth Awareness Day.
Hello, my name is Lauren. I am the mother of a prematurely born child.
(Hello, Lauren – that’s your line. C’mon – all together now. Hello, Lauren!)
Our second daughter was born three and a half weeks early after 42 grueling hours of labor. I was not on medication during my pregnancy with her. 30 minutes after birth, the lactation consultant discovered she had a cleft palate. Within 24 hours, she was an hour away at a Children’s Hospital in the NICU while I recovered for another 48. Within 9 days, she had her first major surgery. Within 21 days, she had undergone two more surgical procedures. The first five months of her life saw a grand total of six surgeries. Since then she’s had two more. Our daughter will be four in March and has already had eight surgical procedures.
She drank from a special bottle when she was not being tube fed. I pumped exclusively for seven grueling months stopping only because my mental health depended on me making a very difficult decision. While she does not struggle with basic needs as much as she did, it still takes her longer than usual to chew because her bite is lopsided. You see, her teeth only meet when she grits them together at one pivotal side – the right side. Her speech is garbled. I can only understand 50 – 75% of my own daughter’s speech. (Ok, cue the tears) Do you hear what I am saying? Out of everything my daughter excitedly tries to share with me, I miss up to half of it most of the time.
This past spring she had additional surgery to fix her pharyngeal flap. This flap closes off the airway between her nose and throat. Speech ordered the surgery to help with her nasal emissions. It’s helped some but it’s still an uphill battle given her poorly aligned jaw and all the air it allows through when she attempts certain sounds. And she’s trained her vocal chords to compensate for the lack of a pharyngeal flap. But you know what? She can say “s” now. Perfectly. I can tell it apart from an “F.” And she can blow up a balloon, blow bubbles, and clearly say “Please Push me mommy!” Most importantly, she can now clearly tell me I am STILL her best friend.
While in the NICU she underwent genetic testing to locate a potential cause or additional factors for her isolated bilateral complete soft and hard palate (that means there was NO palate up there on either side, hard or soft. Hard is when you put your tongue straight up. Soft is when you slide it back towards your throat.) But there was no additional genetic reason. She was diagnosed with isolated Pierre Robin Sequence. This more often than not occurs in boys, not girls. We hit the jackpot.
Despite all of her hardships, all of her struggles, all of the things she will face as she grows and has to overcome new challenges and issues, Charlotte is one of the happiest people I have ever met. Her goal in life? To make us smile and laugh. All the time. For real (to steal a phrase from her).
I went through hell with her. Emotionally, physically, every kind of -ally you can think of. I was there. Gripped on for dear life. Looking back, I know I was depressed during my pregnancy with her. Weighed down with an unresolved postpartum depression from my first pregnancy. Cleft defects often happen within the first 6-8 weeks of pregnancy. Before I even knew I was pregnant our angel was already awaiting us with a huge surprise all her own.
Where am I going with all of this?
I’m filling you in on how hard it is to be a NICU parent of a premature baby. What kind of challenges we face. How it doesn’t all end when we step out of the sterile nursery where our children spent their first days, months, or possibly year. We worry when things come up – anything – about it being related to something that happened at birth – is this because of such and such? She’s got a cold. How will this affect her airway? Should I let her sleep on her back if she’s so congested? What if she stops breathing? And so the monster is fed.
But on the flip side I am truly amazed at how often I manage to deny the monster his food. How often I am able to keep a cool head and maneuver my way around the big issues. I remember time B.C. (Before Charlotte). I would watch shows filled with parents of special needs kids. Amazed I would wonder where on earth they found the emotional stamina to wake up in the morning and face another day knowing the challenges that lay in store. But they did and I do. I look forward to her giggles. I look forward to her playful eyes, her hugs, her kisses, her tantrums, her excited babbling when her bus is about to arrive. And sometimes I want to cry. But mostly I want to rejoice. God has gifted me a perfect Angel and one day, in HIS time, I will understand her perfectly.
