Thursday, January 12, 2017

He Gives and Takes Away

Many of you know that I spent 24 hours at the hospital the other night. We opted to do an overnight stay at the hospital so that we could take care of Bennett entirely. His biggest obstacle is feeding, so we thought it would be a good chance for us to practice feeding him (because it really is a learning curve) and cater to his cues instead of being on the eat-every-3-hours-whether-he's-hungry-or-not schedule that NICU babies are on.

The overnight stay was mostly everything I thought it would be. We, however, did have a slightly rocky start to our overnight stay. First, the NG tube was pulled earlier in the day than I would've liked (thus not giving him a full belly when we started our portion of the night), second, he was due for a bath and that tuckered him out which doesn't exactly make for an ideal feeding, and last, we didn't stick to an ad-lib schedule like I would have preferred when it came to Bennett's feedings.

The amazing parts of the hospital stay were: seeing Bennett without any cords or tubes on his sweet body, having him by my side the entire time, playing dress up with Bennett, gushing over Bennett's good looks with some of the amazing nurses and staff who love him (it is so clear who the compassionate nurses are), and most of all: feeling like we actually have a plan.

Really and truly, I couldn't be more glad to have some sort of idea where we're headed. I can't tell you how relieving it is. But - no amount of information during my week-long labor about what 25-weekers will be like could have prepared me for each and every emotion that I have felt over the past 3.5 months. So, while I am okay in one moment, I still have harder moments. I held it together mostly, despite having (literally) two 1 hour naps in my 24 hours at the hospital. But the exhaustion wore on me and when I had to give my son back to the leads, pulse ox, and feeding tube, I did cry.

With Bennett, he needs time. That's ultimately where we're at. And his time can be spent at the NICU or in our home. Because his only obstacle is learning to feed safely, and there is no definite answer for how long it will take for him to learn, we are considering coming home at some point soon on either an NG tube or a g-button. I have learned SO MUCH over the past 3.5 months, mostly thanks to our amazing primary nurse. She has always explained things so well. And I've been at the hospital every.single.day in these 111 days. So, you could say that I do have a pretty good understanding for Bennett's care. I'm not at all worried about learning to care for an NG tube or g-button, but of course we wish we didn't have to talk about these options.

This whole time, I've been waiting for a grande finale. I've been waiting for that moment when we'll put a period at the end of the NICU sentence and it will all be a memory. And part of that is true because praise God, we will NEVER have to relive those terrifying first 30 days again. But I was reminded by our (amazing) primary nurse practitioner that this idea I had in my head isn't exactly in line with having a micro-preemie. Yes, I'm sure people do have fairly easy and time-appropriate transitions to come home with their 25-weeker... but Bennett isn't just any 25-weeker. He is his own.

One difficult thing about being the mama of a micro-preemie is that sometimes there aren't going to be answers. I could apply that to my pregnancy complications or to Bennett's life outside of the womb. One thing that I've been searching for is: what is holding him back from learning to feed? The team who helps care for Bennett has been so helpful in brainstorming ideas. We thought of this, that, and the other. We have thought about everything under the moon it seems like. Poked Bennett for blood samples, given him oral medications, offered him various nipples/bottles, consulted with speech and occupational therapists, and we've even done the random thing that you're probably wondering in your head if we've tried yet.

I was reminded that even once Bennett is home, life isn't going to get any easier. Life isn't going to magically be as carefree as it was with our full term daughter. With Bennett, we will have appointment after appointment; and frequently at that. Some appointments will be local and others will be an hour away.

We really have a lot to pray about and I hope that you will consider joining us. I have been praying that God would give us the answer for what to do, because I really feel like I don't know what the answer is. We're also in prayer for Bennett's eyes and feeding, of course. I could go on and on about all of the other things we're specifically praying about for Bennett, but sometimes I still can't get over that hump of, "God doesn't run out of grace or mercy" thing. Sometimes I do still feel selfish for begging people to pray.

While I was cleaning up our overnight room, the hospital chaplain came in and offered to pray and I was like, "yes yes yes, please!!!!"

So, thank you to those so willing to plead for Bennett's complete health as you pray for your own family. I'll say it over and over if I have to: if you love my kids, then you have won my heart. You need not do anything else for me, because I will forever think the world of you simply for the fact that you care for my babies.

I will end this post by saying that although there are zero guarantees for plans playing out as we would like, the "plan" is to give things another week-ish at the NICU. He will have another eye exam during that time too, because his sweet little darling eyes are not any better than they have been, so we MAY need to consider treatment. The next week will also give Bennett an opportunity to learn a little more about feeding. At the end of next week, Lord willing, we will (maybe, hopefully) have Bennett under our roof??? But don't hold me to that because we're on Bennett-time.

Happy 1-week old (corrected) to my sweet little 7 & half pounder. You have come so far, my perfect angel boy. I mean it when I say that I could never love another little boy as much as I love you.
Please forgive the horrible hospital lighting, but I'm sharing these pictures for your enjoyment of our darling tiny human with absolutely zero monitors. HE'S A REAL BABY, y'all. I have no recollection, other than photo documentation, of this angel being 2lbs and needing a breathing tube at birth. Thank you to the Lord who GIVES and TAKES AWAY. We have been given a gift (i.e. Bennett) that only prayer can buy. And when we need things taken away (i.e. sadness, bad memories, etc etc), God even does that for us. The Lord is sooooooo kind.

3 comments:

  1. My twins were born at 30 weeks and my daughter had the same feeding issues your son has. Her brother was already home and I couldn't continue to split time between the two of them. So I worked with the staff and we brought her home with an ng tube. She eventually needed a g-tube placed (which two years later she no longer uses!) but I have no regrets about bringing her home with her tube, or with having the g-tube placed. I'm sure you're well aware that most of your family and friends can't understand or comprehend the battles you and your son have fought or will continue to fight in the end. Being the parent of a preemie changes a person in real ways. If you ever need to talk to someone who's been down that path please don't hesitate to reach out. You're an amazing mom and you're doing a fantastic job of advocating and championing him. Keep your chin up, while there will be hard days there will also be amazingly great days.

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  2. I haven't blogged in forever and haven't talked to you in forever, but I've been following your story on Facebook and Instagram. I cannot imagine the strength you and Ross have had over these last few months. I have prayed for you and will continue to! I hope being a family of four is everything you've prayed for.

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  3. Beautiful.
    I love that blanket too!

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