By Amy

This is a reflection written while Michaela was still in the NICU. Michaela is home and happy today.


Michaela continues to do well and gained some great weight today (up to 3 lb, 3 oz), but I'm feeling a bit reflective tonight. A couple we met recently in Michaela's room with twins born at 28 weeks buried their week-old son a few days ago. He suffered a pretty severe brain bleed, and they had to make the decision as to whether they wanted to keep him on life support or not.
It's a sad reminder of just how fragile life is, and how different Michaela's story could have been. Had we gone a few days longer in my pregnancy without an ultrasound, we might have lost her. And a brain bleed is a complication the neonatologists warned us about when we first met with them a few hours before Michaela's delivery.

Luckily, neither of those things ended up happening in our case. Yet there's still no guarantee she's coming home with us at the end of this journey. The only thing to do is take things one day at a time…and hope and pray that our story has a happy ending.
I hope you don't mind a break from our "typical" update, but I had a few thoughts I wanted to share with our friends, family and all our supporters out there...

What I wouldn't give
...To have had a stranger come up to me on the street when I was pregnant and ask "When are you due?"
...To have stretch marks on my belly right now -- over a month before my due date -- instead of bags under my eyes.
...To wake up at 3am to a hungry newborn crying instead of an alarm alerting me that I need to express my breast milk.
...To walk down the hall instead of driving a half-hour to see my baby's face every morning.
...To not have to change my baby's diaper through two portholes in an incubator.
...To start my day without hearing or speaking the words “morning rounds.”
...To dress my daughter without being worried I'm going to pull out a tube or IV.
...To give my baby a bottle without worrying whether it's sapping the energy she needs to keep herself warm.
...To see my daughter's grandparents, aunts, uncles and the rest of our friends and family hold her in their arms.
...To look at all the beautiful baby gifts we've received over the last few weeks from friends and family and not wonder whether we'll have a baby come home to use them.


I hope and pray that some day soon these experiences will eventually come, but in the meantime, I'm thankful for:
...Days that I don't have to watch my baby get another IV put in.
...Days when the doctors increase my daughter's breast milk feedings and lower her IV fluids.
...Days she gains weight -- even if it's only a few grams and everyone in the NICU thinks it's just poop that hasn't come out yet.
...Days she poops!
...Days I get to hold my sweet daughter without the nurse needing to increase her oxygen level.
...The nurses and doctors at Evanston Hospital who work so hard to help keep my daughter alive.
...Friends and family that show their love and support in so many ways.

Happy Birthday!

I have a one-year-old.

My little 2lb 8oz baby turned one today. He now weighs 18.5 lbs, which puts him nearly on the growth chart for his actual age. He's grown from 15 inches long to about 27.5. Again, just starting to graze the bottom of the growth chart.

Whenever I describe his age to people, I always do the mental math by saying he was born 3 months early. It was actually a little more than that - 3 months and 5 days early. When I look at his ticker today for his adjusted age, it reads "8 months 3 weeks and 5 days."

Wow. Looking at it that way really highlights how early he really was.

As you'd imagine, today has been a crazy mix of emotions. Like all moms, I'm happy to be celebrating the first birthday of my son. I'm sad and nostalgic that he's growing up. I'm proud of how much he's grown.

There's so much more than that, though. All of my emotions just seem so much stronger than most parents' on their child's first birthday.

I feel like I'm turning a page. It's the same relieved feeling I had when we brought our son home from the NICU. We made it. We survived. HE survived. A whole year. And he's a thriving, happy ball of energy. What a relief. Now, we can concentrate on enjoying things more. It'll get easier from here...right?

And I'm so unbelievably proud of how hard my son fought to get here. I've heard people talk about their hearts swelling with love, but I never understood that until I became a mommy. It's like I can feel my heart grow. And it's magnified today. If we would have lost him in the beginning, I know we would have been devastated. Only now, after falling in love with my baby, do I truly understand what I would have missed out on if my son didn't make it. I didn't have enough capacity to love him enough until many month later, and it's only in hindsight that I'm able to grasp the all-encompassing love I would have missed if my son didn't come home with us. It physically hurts just to think about it that way. Luckily, my son was a fighter from the beginning. Rolled with the punches. "I'm showing up early? Cool. Have to live in a strange hospital in a strange city in a strange state? No problem." He's weathered the storm better than anyone, and we're so lucky to have an amazing son who likely won't have any long-term effects of his early birth.

I'm proud of us. My husband and I. We've been to hell and back in 2011, and we're closing the door on that. All three of us were admitted to the hospital at least once in 2011. We've had health scares and spent a dizzying amount of money, but we're here. And we'll be stronger for it. Better for it. I look back on who we were before our son was born, and I don't even recognize us. Everyone changes when they have a baby, but not like this. Not like this.

But not all the changes are good. All the memories came flooding back over the past few weeks, and they were especially strong today. Sometimes, it's images of labor & delivery or the NICU. They pop in out of nowhere, triggered by all sorts of things. The weather that takes me back to the snowy day of my son's birth. The Super Bowl advertisements that drag me back to that pumping room and the tiny individual TV where I stared at that game without knowing the score. My MacBook dictionary screen saver that has "gavage" as its word of the day. Really? Why today of all days? That stupid stupid wonderfully produced Pampers commercial about Every Little Miracle. It shows that tiny baby born 3 months early and it has that beeping. That NICU beeping. Beep...beep...beep... It took me months to not hear those beeps every time the microwave finished cooking or a truck backed up or my alarm clock went off, and that commercial takes me back. Every time. And it's been harder to push those images out as his birthday got closer.

It's not always memories, but sometimes it's feelings. I've been feeling anxious the past few weeks, and it got worse last night. I couldn't sleep. I was too lost in my thoughts until way past 2 am. I never had anxiety before the NICU, and now, every time I feel anxious, I think of the NICU. Or labor & delivery. Anxiety will forever be tied to those experiences, and I've been fighting against the flashbacks every time I've felt anxious over the past few weeks. Even when I get anxious about work or any other normal thing...BAM!...Back at the NICU. Or in labor & delivery. It's frustrating. I'm frustrated that I still struggle with these feelings. I know I'll never be the same, and I grieve the person I used to be. Sometimes, I wish I could be just a little more naive again.

On balance, I'm glad today is over. I'm terribly sad that my little baby is growing up, and I'm so happy to celebrate his birthday with him. But, mostly, I feel relief. Relief that this year is over, relief that my son is doing so well, and relief that we get to put some of the most difficult parts of this battle behind us.

I love you Captain Stinkerpants. Thank you for being the Best Baby Ever.