This has been one heck of a year. Between being pregnant, becoming high risk for that pregnancy, the sudden death of a co-worker, the abrupt birth of Little Miss Minion at 28 weeks, spending 84 days in the NICU, changing job positions, becoming an expert on all things Preemie, watching my daughter go through a life-threatening infection and 4 subsequent brain surgeries, and adjusting to life with a preemie at home…I think we’ve had enough excitement to last a long time.
I’m a much different person tonight than I was last New Year’s Eve.
I took some things for granted this year. That I would have a 9 month pregnancy. That I probably wouldn’t die in the process of giving birth. That my baby would get to come with me when I left the hospital. That I would be able to show her off to family and friends, and not be terrified to take her out of the house for fear of getting her sick. That she would stay healthy once she was born. That she would always remember to breathe, and know how to eat. That she would weigh more than 7 sticks of butter.
I learned a lot this year too. NICU nurses are some of the toughest and most caring people in the world. They laugh over the few things you CAN laugh about in the NICU. They cry when they come back after a long weekend to find your baby on a ventilator after having emergency brain surgery. They teach you how to hold your baby, how to touch your baby. How to change diapers amid wires and tubes and IVs and PICC lines.
I’m much tougher than I thought I was too. Changing your first ever diaper on a baby who weighs a little over a pound, with an IV, heart monitors, breathing monitors, pulse oxygen monitors…its a challenge. But I did it, and Mr Minion did it. I walked out of the hospital twice a day for 84 days with no baby in my arms. I learned to smile and nod when people told me about how terribly their birth plans unfolded, how they had to wait two minutes to hold their babies, how they had caved and gotten the epidural after 10 hours of labor, how their “tiny” baby seemed so small at 7 pounds and I shouldn’t worry about LMM.
Some things I learned this year:
Don’t take relationships for granted.
Don’t underestimate the difference three weeks can make. At 25 weeks, LMM was estimated to weigh about a pound and was about 10 inches long. Not ready for life outside me. At 28 weeks, she didn’t even need a ventilator.
More people than you would think have experienced the NICU, but most people have never seen a preemie. Most people have no concept of a baby that small, with purple skin, with barely unfused eyes, with more wires and tubes coming off of them than you can count. They will say things to try to make you feel better, but it doesn’t usually work. Sometimes they will try to act like everything is normal, like your baby is just staying in a baby hotel for a while while it grows. They don’t understand (or they don’t WANT to understand) how unbelievably fragile a baby born too soon really is. Paper thin skin. Any touch is interpreted by their immature brains as pain. They can only be held once a day because the stress of moving them around is too much.
NICU/Preemie PTSD is real.
If you think the average new parent is germophobic, you’ve clearly never met a Preemie Parent.
9 mls seems like a TON of milk and you don’t know how its all going to fit in your Preemie’s tiny stomach. In case you didn’t know, 9mls is a little less than 2 teaspoons.
There is a different alphabet in the NICU. We learned about As and Bs (apnea and bradycardia, breathing pauses and low heart rate), Ds (desaturations), TPN (this is custom-made nutrition liquid for each baby based on their weight, their blood work, and how much milk they get), BP (blood pressure), BM (bowel movement), IV, IVH (intraventricular hemorrhage, or brain bleeding, something that is not uncommon in babies born around LMM’s gestational age), MRI, NEC (necrotizing enterocolitis, a very, very bad intestinal infection that kills 25% of babies who get it), and CPAP (continuous positive airway pressure, a method of breathing assistance in between the ventilator and the nasal cannula).
Take all the typical baby advice and throw it away. Preemies have their own rule book that mostly consists of pictures of them laughing at you.
Your NICU bill will likely be over a million dollars. Seriously.
You will be in RSV isolation for most of your first year, depending on when you have your Preemie and how many weeks gestation it was at birth. No shopping trips, no parties, no running into the store for just one thing.
Having said all that, I won’t say that I wouldn’t have it any other way. I would give anything to be able to have given LMM even another week of being an “inside baby.” To have kept her from getting GBS, meningitis, sepsis, and hydrocephalus. To have been able to take her home when I left the hospital, and have her be healthy enough to do that. This is not what any of us had planned, but we are trying to get used to it. The future isn’t written in pen, after all.
And now, as a thank you for your loyal reading of my ramblings, here are some funny cartoons. HAPPY NEW YEAR!!!