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 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.

Thursday, January 5, 2017

We Made It To Our Due Date!

We made it. Happy 40 weeks to Bennett Jimmie. My whole heart and soul loves every perfectly formed ounce of our Bennett. I never thought his due date would roll around, but here we are, 104 days later. 

It all still feels very hazy. I wake up every morning and consider that maybe it's all just a bad dream having a baby 3.5 months early and all. But you know what? We have survived (to my SERIOUS surprise) and we're going to be okay. The pain doesn't get any smaller, but the hope does get bigger. 

For those who know little about preemies, one of the most basics things you should know is that once the due date arrives, (today in our case) babies are considered newborn. So, although he is 3.5 months old, he only has the capabilities of a baby who was just born today - and even still, he could lag. He won't be rolling, crawling, sitting, or walking "on time." For the next two years, we will be followed closely by a team that tracks preemie babies. Yes, we'll be discharged soon, but no, the doctor appointments won't end. Once Bennett is 24 months old, he should be caught up to others his age, or close there to it.

It only recently hit me how life changing this whole process has been. Not only for Bennett (especially for Bennett), but for me. And I assume for my husband too. 

We still have some work to do in the NICU and are hopeful for a discharge in 2ish weeks (Lord willing). Each and every day since stepping foot into that world, I have been molded to be a different me. For those who knew me well before Bennett was born, I want to say that I'm sorry if you look at me now and see someone else. We are probably going to have to get reacquainted. I can't unsee, unhear, or undo the past 104 days. 

My number one goal recently has been to guard my heart. If that seems selfish, then so be it. But unless you've been in a similar situation, it will be hard for us to connect some days because this world consumes me. If I appear to not be as trusting as I once was, it's because I am still in survival mode. I'll get back to being more trusting eventually. 

Also, I just want to say that it really means a lot to me when others hurt with me. Instead of offering good words about how this will all be a memory eventually, sometimes I just prefer to be told, "I am crying with you." For everyone who has cried and hurt for us, it means so much to know that we're not alone.

Anyways, since today is pretty special, I want to rave a little bit about our Bennett.

First and foremost, surprise, here's a sweet picture of my angel with zero tape on his face. We got to experience him like this for two whole days.
THE NOSE. Oh my gosh, oh my gosh.
Mom, you're not really going to eat me, are you?
My handsome.

No oxygen and no NG tube in those pictures. What a joy! I kept saying, "he's a real baby!!!!!!" As most of you could probably guess, I basically ate his entire face off during those amazing 48 hours. I swear, if I was left alone with him in a room, I probably would've licked his face raw. I'm laughing because that sounds psychotic, but I dare you to try having a baby that is as delectable as Bennett and NOT lick him.

But seriously, look at this text Ross sent me. Ross sent this text on the same day that he knew I would be going to see our baby boy completely tape-free. I laugh. (p.s. Ross meant to say, "wear" not "where").

Bennett has been sitting right at 6lbs 15oz for the past week. 
The one and only reason Bennett hasn't crossed over the 7lb mark is only because we've been doing a lot of experimenting with his feeds. At this point, his ability to eat full feeds is the only thing holding us back. We've tried TONS of different avenues to getting Bennett to eat more and better, but what it comes down to is that our baby boy is taking his own time and learning things as his own pace. He WILL figure it out, but we're all on Bennett time. We're back on P.O. feeding (bottle) & gavaing the rest through the NG tube. 

We are absolutely praising the Lord and so joyful to say that Bennett passed his hearing screen. That is such a relief.

Also, most importantly to Bennett's progress, he is 100% off breathing support and has been since right before Christmas. We were waiting several days to make sure he was in the clear, and it turns out, YES HE IS IN THE CLEAR. He doesn't need any support at all, even during feeds. He is 100% all.on.his.own. Seriously just thanking God every single moment that I can for this amazing gift he gave to Bennett and to us!

One thing that we would love to have you pray for is for Bennett's sweet little eyes. His eyes are still underdeveloped at this point, so the doctor can't say right now what Bennett's future is with sight - if it'll be absolutely perfect, or if we'll have to pursue treatment. Of course we are believing that his eyes would be healed 100% from a preterm delivery, but statistically, babies born at 25 weeks generally have issues with their sight. My mama heart is worrying sick, but I know that each prayer is heard.

Last but not least, I HAVE to share this sweet video of Bennett. Ross sent this to me the other day and I thought it was so sweet! 
Thank you all for loving Bennett so well for the first 104 days of his life!