Life in the NICU

I am officially at the end of my rope. I'm hanging from the bottom, and I'm starting to get creative...looking around for anything and everything to grab a hold of, to keep me dangling just a little bit longer.

Charlotte is 36 weeks, today. Doctors have told us - on several occasions - that they have very high hopes of her going home in the 36th week. Normally, I'd say, "Let the countdown begin," but I feel like I have been drained of any optimism or hope. As we settle into our routine of going to the hospital on a daily basis, things are beginning to feel like they will never change. Will my daughter spend her 16th birthday in the NICU? Lol, sometimes it feels that way.

All we are waiting on right now is for Charlotte to eat - every feeding - her entire bottle for 48 hours straight (so, no use of the feeding tube). Her patterns of doing so are all over the place, and yet they are consistent. For example, last night she ate her entire bottle at 11pm, nippled 30mL at 2am, ate her entire bottle at 5am, nippled 24mL for me at 8am, and then ate her entire bottle for me at 11am. So she's batting .500, it seems. But we can't guarantee which bottles she will eat, and which ones she won't.

My frustration comes with the fact that every time we look close to getting there, we have a "set back." The first set back was a nurse declaring that Charlotte is too aggressive when she eats, and needed a preemie nipple to slow the flow of milk. That's fine - but she has to work a bit harder. Which means she tires out a bit faster.

The second set back came today, when I was told that an occupational therapist had been called to evaluate Charlotte's eating habits. I suppose this isn't really a "set back," per se, it's just frustrating. Doctors are concerned with the voracity at which she eats and they want to teach her to pace herself...but how long will this take? Are we looking at an extra week in the NICU while we "work" with her?

I will admit, Tom and I have started to dread feeding times ("care times," as they call it at the hospital -- every three hours she gets a diaper change, her blood pressure checked, her temperature checked, and the nurses listen to her heart/lungs and feel her belly). They are incredibly scary for two parents who have never been to medical school. Every newborn must know how to suck/swallow/breathe when eating. Charlotte's problem is that she does this: suck/swallow/suck/swallow/suck/swallow/suck/swallow/suck/swallow...turn purple and scare the shit out of mom and dad...breathe. Sometimes it takes her 2 seconds to breathe...other times it takes her 30 seconds.

We are learning not to panic when this happens. In fact, when the alarms go off because she is no longer breathing, the nurses just kind of glance in our general direction and continue doing what they're doing.

So yes, she definitely needs some sort of help (or maturity - this could very well be a product of her small size and young gestational age). I don't argue that at all. I just wish she didn't. I wish she could catch on and just come home already.

I'm tired.

I'm tired of having my baby in the NICU. I'm tired of working around tubes and wires every time I pick her up. I'm tired of taking her temperature every 3 hours. I'm tired of wondering what my child looks like without an orange fucking tube sticking out of her nose. I'm tired of missing out on things like her first bath, the day her belly button cord fell off, etc.

I'm tired of having to explain to my 4-year-old, "No buddy, mommy can't hang out with you right now. I have to go to the hospital."

I'm tired of having to sign in and go through several barriers of security to see my own daughter. I'm tired of having to wash my hands to my elbows every 14 seconds.

I'm tired of people asking me when she will be coming home.

Charlotte is a perfectly healthy little girl. She just needs to learn to eat properly. And because of that, I am tired of her spending her days in a plastic tub on a rolling cart when she isn't spending it in Tom's arms or mine.

I am tired of people demanding my attention, as if I have any time to give them. I have always been a good friend. I will be there for you when you need me. I will listen to what you have to say, or give you my shoulder to cry on. But right now? Right now I have a fucking baby in the NICU and when I'm not with her, I am with my other child. He needs my love and attention, too. For once, I can't be a good friend. I'm tired of people not understanding that.

I am tired of people who expect me to send them updates all the time, without them asking. Please forgive me if I am not thinking of you or your needs at this time. And I am tired of those same people giving me the silent treatment as if I should be punished, because I am being so "selfish."

And yes, there are people out there right now who are trying to make me feel as if I am selfish. As if devoting myself to my children 24 hours a day, 7 days a week, is some sort of sin. It's amazing what you learn about friends and family in a time like this.

I am tired of attaching myself to a machine every 3 hours to pump breast milk. This was not exactly what I had in mind when I learned I was pregnant and swore I'd dedicate myself to breastfeeding once my child was born.

I am tired of saying, "See you tomorrow," to my own daughter, just 3 weeks old.

I am really fucking tired of everything.

Thankfully, at this time, we have some really phenomenal people who have surrounded Tom, Thad, and me and truly embraced us. I have learned that it is better to say, "Thank you," than, "No thank you," at times like these. I don't typically allow others to help me, even when I am desperately in need. But I've learned to let them now. I didn't want to accept all the meals that people we didn't even know were delivering to our doorstep...but wow did those meals come in handy. I am so thankful for those people.

A woman I have never met made Charlotte a quilt.

Another woman I have never met owns a local bakery - she made a special frosting just for me, and had 6 cupcakes delivered to my home.

The mother of a good friend of mine has taken me under her wing and essentially made me feel like I was her own daughter. She has come to see Charlotte in the NICU, she had Tom and I over for dinner last weekend, she has made us meals, and she most recently has made an incredibly generous offer to help us get out to New Mexico in a couple weeks.

People like the ones I have mentioned are the ones who are helping me to successfully dangle from this rope, even when I feel like I could lose my grip at any moment. I'm so thankful for these people in our lives.

These people make me feel like I can push just a little further and hold on just a little longer. If you are reading this, and you are one of those people, thank you.