Wednesday, April 14, 2010

Coping with the NICU Experience

Ok, so I know that most of the people who read my blog really have nothing to do with NICU babies, other than that they know my family. So, please, if you know anyone who is currently in the middle of their own NICU experience, or may be soon, or who are dealing with the effects of having a preemie, and you think this may be helpful, please refer them here. Thanks!

Why am I qualified to give advice on this topic? Maybe I'm not. But...I did spend 100 days in the NICU with my 27-weeker baby (90 days early) who dealt with small problem after small problem, as most micro-preemies do. What did we deal with? A partially collapsed lung, an open PDA that almost required heart surgery, being intubated three separate times, an almost perforated bowel, five weeks in the intensive care nursery, 9 weeks in the "eating and growing" nursery, being tongue-tied and needing a frenectomy, needing thickened milk, reflux without symptoms, and bilateral grade II (almost grade III) brain bleeds. Eating is still up in the air. He came home with a heart/apnea monitor and still needs it. He also came home with his NG feeding tube and still needs it from time to time. I like to think that I'm still sane after all of this, so I thought I'd share how I got through it all (up to this point). So here ya go.

(*Disclaimer: I have no idea how to deal with the reality that your child might not make it. My baby was given a 90 percent chance of living; if you are not so fortunate, I don't know how much my insight can help you. There is probably a lot that you can teach me. We all feel for you and wish you the best.)

Things to remember as a Stay-At-Hospital-Mom:

1) It could always be worse. Your baby could be earlier, sicker, etc. This could be your tenth child. You could be 16, alone, and without insurance. (If you are 16, alone, and without insurance, nobody judges you--we feel for you and admire your strength. That situation wouldn't be easy for anyone.)

2) Be glad that it's you with a baby in the NICU, not someone who can't handle it. You can handle it. Or else God wouldn't have put you in that situation.

3) It's hard to feel like a mom when you can't hold your baby and someone else (tons of people, in fact) is the primary caregiver. Enjoy all of the diaper changes you get to do. But then just enjoy the fact that you don't have to change every diaper! Especially the poopy ones. That's what your insurance pays the nurses for. :)

4) The end takes more patience than the beginning, but wouldn't you rather worry about your baby learning how to eat than your baby learning how to breathe and, you know, stay alive? When the end is in sight but still seems unreachable, relax. You'd rather have your baby stay too long in the NICU than come home too early. If he comes home too early, he'll probably just end up back in the hospital. You really don't want that.

5) It won't last forever. It feels like it will, but it won't. They can't keep your baby there forever. No NICU has ever sent a baby to kindergarten.

6) Every baby is different, but every baby is a miracle.

7) If your baby is facing possible long-term problems, relax. At least knowing about it this early puts you in a better position to provide early interventions and minimize the problem.

8) We all break down. Having a baby in the NICU is STINKIN' HARD! Go ahead. Cry. No one will blame you. Yell, even. You are dealing with more than many people face in a lifetime. It's hard seeing your baby on life support. It's hard not knowing what to expect, and just "seeing what happens" day to day. No one expects you to be superwoman. Besides, it's a mom's job to worry.

9) Pumping stinks. I despise it. It's like having twins, only you hate one. I hated going home with my pump and not my baby. You can't do anything without thinking about your pumping schedule. It hurts. You have to get up in the night, not to a crying baby, but to an alarm telling you that you need sit for 20 minutes of pain for the eighth time that day. Just remember: the first few weeks is important for your baby. When nurses and doctors are doing everything else for your baby, you are providing the very most important thing that your baby needs and no one else can do that but you! So, go ahead and schedule your pumping schedule around your favorite TV shows. Don't lose sleep over getting behind in your milk production. And when the time comes that you will be a better mom by not pumping, STOP! Pumping is a darn huge sacrifice and with all of the stress that your situation already gives you, you don't need to put yourself through more misery. Don't feel bad about stopping.

10) You can never, ever fill your miracle quota. Keep asking for miracles, because God loves your baby more than you do, believe it or not, and He wants to work His miracles for your benefit. It never hurts to ask for more.

And above all...

DON'T WORRY ABOUT WHAT YOU CAN'T CONTROL! Seriously. I know, it stinks not being able to control much about your baby's situation, but it will drive you crazy if you just sit and worry all day long. Just have patience. Have faith. Do what you can. And don't worry about the rest.

My very first time picking up my baby; two days old.

My very first time actually holding my baby; 13 days old.

Two to three weeks old.


Katie B said...

So good of you to share your thoughts and advice. I've come away with a different perspective. You were so strong during that time, I admire you!

Val said...

I was able to be out there for a week to see you little family, but watching the video of the kid makes me cry. I miss you guys sooo much. I'm happy the horses are with you, they always make the landscape look prettier! And they are such good therapy! The time I spend with my horses I consider $100./hour therapists! -Maybe the price has gone up now! But they're worth all the hay they eat! Have fun and spread the love.