Monday, September 23, 2013

Part 5 of The Jedi Series: Breathing

It has been exactly 2 years since we brought our boy home from the NICU.  After a tumultuous pregnancy which you can read about HERE in it's entirety, and ultimately a happy enough ending, we finally brought our boy home after a 84 day stay. Our journey to bringing home a preemie and what it all entailed, started well before we came home, but what we learned in our NICU experience didn't prepare us at all for what lied ahead. Since all preemies are different, only a general outline of what to expect could be given and even then, it all depended on him. If I could go back and give myself some advice, I am not even sure I would. The things I know now, they had to be learned by living it. So naive I was, a mom of 4 healthy kids, I can surely navigate this preemie stuff no problem, right? It's not THAT big of a deal, it just means he's a little smaller and might get a cold easier, but hey on the bright side, no more scary pregnancy! He's out and he's alive. So that's that!

I was some kind of adorable in thinking this way.
In all reality, I had no idea that our journey from the NICU was just a little back pat and  being out of the NICU doesn't really change the game, it just means the game is at a different ball park. I know a lot about babies, and even having had 4 previously, this knowledge and experience didn't really give me any big advantage. For one, I may have baby experience, but I didn't KNOW my son when he came home. I knew his care routine  and enough to keep him alive and his apnea monitor from going off. I also didn't know much about preemies, I just knew my preemie. Sure, I knew the general outline "ball park rules" that I had picked up from the Nurses and Staff at the NICU. How to feed and handle reflux was up there on the most important things to learn. Second would be his list of medications that he would take every 2, 4, and 8 hours. Third would be, what to do if his apnea monitor (that was on him 24/7) went off. And FTW, they never did tell me how to recover after his apnea monitor goes off. (pro tip: after the apnea monitor is done screeching and you have the baby alive and settled, feel free to go gangbusters on delicious treats and also CRY your eyes out because that shit was scary. You deserve it.)

Everything else, I had to learn on the fly. And fly I did, straight into walls, straight into my pillow sobbing, and also soaring though the air wearing a super hero cape, holding my sweet boy Simba style and shouting "I WON! BEHOLD, HE IS MINE! MY CREATION!!" But if I really was able to go back in time and tell myself a few things, I think this is what I would say: 

This shit is not your fault.

Not even a little bit. There is nothing you did to cause this. It was not for lack of the Omega 3s and the fish oil that you forgot to take that one week you were alternating dry heaving and the spins, it is not because you dyed your hair, or because you had to bomb your house with Raid the week you found out you were pregnant. No fumes, no food, no not even that cough syrup that you desperately needed at 8 weeks because you thought if you coughed like that ONE more time, little Jr was going to be shake, rattled and rolled right out. Pregnancies are not a delicate condition. They are expected to go normally until proven otherwise. Your pregnancy lasted for as long as it possibly could and it was not because your body failed you or because you didn't try hard enough. So stop thinking you failed in some way. Instead, think of how amazing it is that you created a human that was whole and beautifully formed after just 6 months. Your body and you did that. You created life. Period. You are bad ass.

It's okay to feel sorry for yourself. 
Whoa, I didn't say go run and cry flapping your arms like a deranged seal. I meant, it's okay if you just don't feel like faking like you are just exuding gratefulness and positivity. That's right, I said FAKING. I called you out. Being grateful for what you have and being happy are two different things. You can be completely grateful that you and your preemie are alive, but also feel sad about things you didn't get to do. Didn't get to get fat. Didn't get to get a pregnancy massage. No belly cast. No couples birthing class that is all the rage. No normal child birth to make you one with nature and the fucking moon. You never even got to eat chicken and waffles which you had been craving your whole pregnancy. It's okay to say "this shit is for the birds" when you think of all the normal things you missed. You are still grateful for what you have, right? Right. So why are you lying to yourself when you really don't feel all that ding dang happy? Soak in it if you have to. Feel like shit when you think of things that didn't go to plan. And please don't feel like you "got off easy" because your friend's preemie isn't fairing as well as yours. Would your friend feel good knowing that you feel better about your situation or are MORE grateful, because her baby needed 3 blood transfusions and lost her hearing? I don't think she would. Would you like it if someone said they are so incredibly blessed because their baby wasn't as small as yours and only had to stay for 2 weeks in the NICU? No you would not.  (FYI: Someone really did tell me that when Jedi was in the NICU...I still feel like screaming at them to stop feeling sorry for my baby..and it's been years) 
And so, it is okay to feel how you feel. If you are happy, let yourself be happy. If you are not, that is okay too. You are not your feelings, your feelings are just a part of you. Keep it real, yo. 

Be Patient.
You don't know much about your baby, but your baby doesn't know much of freaking anything so PHEW. Be patient with yourself. Be patient with your baby. Baby is not going to pack up his shit and head out on the shoe lace express if it doesn't feel properly bonded to you. No, because babies can't even tie shoes, so that would be a silly idea. Relax. You are just itching to show this baby who the Mama is and what the Mama do, LOVE AND SNUGGLES, DUH....but the baby might be happy just kickin it by himself in his baby burrito. Or on the opposite end, this baby might just be half marsupial and want to bury itself deep into your neck and never leave. He might be both (spoiler alert: HE IS) and that's okay. Preemies come with entirely different equipment in their brains. An extra sensitivity to light, touch and sounds can make a preemie either love something fast or cry faster than you can finish closing a door. Thankfully, he will grow out of this. And eventually, he will totally know what the Mama do.

Your kids are going to show you a thing or two.
 Your kids weren't there to see him prepping for heart surgery. They only know about it because you explained to them that everything was okay but he would have a scar on the side of his chest and very smart doctors were going to take the best care of him that was scientifically possible. You were there, and you remember when a nurse offered to hold your hand as they delicately inserted a tube in his throat to suction out the fluid that was building. This suction put stress on his already stressed heart, and doctors and staff came flying through the doors to help. Your kids did not see this. But you remember it as one of the more terrifying events of your NICU stay. The feeling of wanting to run down the hall, swinging open the door, and just escape, was incredibly tempting. Yet you couldn't even move an inch. You couldn't even open your hand for the nurse to hold. These flashbacks will come to you for the next few months when you see his scar stretch and grow into his fat rolls. But your kids will only that their brother has a scar. They will only see their brother not the delicate preemie that was carefully wrapped and hidden away under a soft blue light. They will treat him as another one of them. Your daughter will pile her Barbies on top of his legs so he can play. Your son will ask if he can hold him for awhile. Soon they will all be able to carry him from room to room. They will complain about his crying. They will say he smells. And they will show him things you can't. "Mom can we take him outside in his Bumbo seat and show him how to blow bubbles?" "Mom, look! We are having a tea party!" "Mom he can push his toy!" "Mom! Mom! Look! He thinks this is funny!"
They don't see that delicate preemie immune system that haunts you while you sweep and sanitize the bathroom.They see their brother. Their little smelly baby brother whom they love so much. When he is hospitalized because he is sick, they will worry like you worry. And when you get home, they will hug him just how you hug him. They are resilient little people. And they are going to teach you their ways. 

You are ready for this.
No one else took a class on your child but I bet you could teach one if you had to. You have made it this far lady and no ones given you the fail card, so you better believe you are the best woman for the job. If you had a special needs child or a child with a serious medical condition, you would get your bearings just like every Mom and Dad before you, and get with the program. They rocked it, and you will too. Don't believe me? Go look at that kid and tell me you couldn't or wouldn't. Yea. I thought so.

He will astound you.
In ways I can't even describe. He will test every limit of your heart and he will barrel right through them. He will make you get up every day with a smile on your face. You will cry at every milestone. You will revel in the little things because you know how delicate the line was between life and death. You will get pissy when he's pissy and then you will both be pissy and you will sigh. When he is asleep, you will threaten people with your eyeballs. You will laugh harder than you ever have. He will amaze you with his strength and resolve. You will wonder over and over again, how in the world you got so damn lucky. You will hug all your babies a little tighter and a little longer, knowing in your heart of hearts you would do damn near anything for them. Even a scary as hell pregnancy, a traumatic birth, and a not so great NICU stay. 
And he will astound you over and over again.

You'll never get used to it.


  1. You never fail to amaze me with your words!! I have NEVER before read a writer/blogger that I enjoy reading and feel connected to as I do reading your thoughts, experiences and poetic words. Keep up the awesomeness that is HUMBLE..

  2. He is amazing. But you already know this.

  3. Anonymous10/09/2013

    Beautiful. Amazing. Wise. Thank you for sharing.

  4. Bless your heart. We had a brief NICU stay with our daughter, and I hated every minute of it. Amazing story. From one blogging mom to another, I'd appreciate it if you'd visit me at Be blessed!

  5. Like a fucking boss.

  6. You put into words what I couldn't. Thank you. *wipes tears*