Wednesday, April 19, 2017

Bennett Update

Pretty sure my thoughts are bouncing from place to place in this post, but I promise that it all ties together.

In the words of Trolls, "Hairrrrrr we gooooo." Kensington and I say that multiple times every day when we're about to start something. Here we go :)


...


Of course I love my husband's help, but when it comes to the day-time happenings, we really enjoy our routine, just me, Bennett, and Kensington. Ross does so much for us while he's at work by providing *everything* that we have. And if we're being honest, he thrives most at work. I've known that about him since the very beginning - which is part of the reason I was attracted to him. Something biological in me was drawn to a man who felt passionate about being the provider.

Sometimes I feel really guilty that I flourish as a stay-at-home-mom. The world tells me that it should be lonely and that I should immerse myself in playdate after playdate. But in reality, me and mine are homebodies. We thrive on routine and pouring ourselves into one another in the walls of our home. Some days (most days), we don't even leave the house. But that's us. I completely understand that other parents thrive in different environments - so I'm only speaking on how we best operate.

One of our usual day-time happenings include doctor appointments. Today, I took the kids to Bennett's GI appointment and I thought I'd update y'all on his feeding plan. P.S. this double stroller is life! Ross' amazing colleagues bought it for us. It fits through doorways and I can keep both kids contained. Current mood: winning.
As many of you know, we've been on a continuous drip for 4 weeks now. Bennett has been getting 120mLs (4 oz) every 4 hours continuously. Meaning that he gets 1 ounce per hour. We have to wash the bag every 4 hours to ensure no bacteria starts growing. He's on a 24 calorie mix, which by the way, I had no idea until Bennett that there were recipes to mix different amount of calories in formulas. I believe most formulas are around 20 calories. When the hospital tested my breastmilk, it was 20 calories as well. I think that's the standard. Babies who need help with growth will sometimes be on 22, 24, or 27 calorie recipes.

Bennett's gastroenterology appointment was very productive! They are so awesome because 1) they get us in & out - having a screeching toddler probably helps to move the appointment along, 2)  they listen to us and ask us all of the questions - which is seriously so appreciated because afterall, Bennett's mom & dad are the experts on Bennett, and 3) we always come out with a plan!

Our dude weighs 13lbs, 13oz which is pretty average for babies his adjusted age. I always compare him to what Kensie Grace was. Bennett is 3.5 months old adjusted, and at 4 months old, Kensington was almost 15lbs. So, he's not doing bad!

Our plan going forward is to try bolus feeds during the day and continuous feeds at night. We'll have to increase from 24 to 27 calories, at a lower volume. Our regimented schedule will consist of 4 bolus feeds per day at 8am, 11am, 2pm, and 5pm. Then, we'll start his continuous drip from 8pm-6am. From 6am until 8am, he will get a break. This will hopefully work up his hunger cues. Before each bolus feed during the day, I'll be able to offer him a 15mL (half an ounce) bottle of a special rice-cereal/formula concoction.

The bolus feeds are soooo important because they will help Bennett realize he's hungry and (hopefully) he'll be interested in the bottle. For the last 2 weeks, he has refused the bottle and paci. We're going backwards, and that's not good. I blame the continuous feeds. But, we had to do a continuous drip because he was vomiting so much. Bennett's GI doc mentioned doing the fundoplication and Ross & I are *extremely* against that for several reasons that I don't feel like typing out. That would be a last resort for us.

In addition to our new feeding plan, we're increasing Bennett's prevacid dose from 3mL to 4mL. When we were discharged from the NICU 2 months ago, he was on 2mL's so we've increased it once and will try to increase it a bit more. Poor Bennett always cries once he realizes the cold medicine is in his tummy. I don't think he likes that sensation!

We are prayerful that this new plan will help Bennett become re-interested in the bottle/paci and move us in the right direction. We will have the g-button for longer than we anticipated because of our backwards steps. All that being said, we really have no idea of a timeline for his button.

The other things we're working on with Bennett are his PDA (we got the all-clear for waiting a full year before his next echo!!!) and Bennett's eyesight. We will hopefully bring good news regarding Bennett's eyes very soon. Our next appointment is at the end of the month.

So if you're wondering, my life continues to be full of chaos and stress, but a large dose of joy. It's apparent that I was chosen for this life. Even from the beginning. I remember doing IVF in 2014. The first time we had to mix bravelle and draw up a specific mL. I was like "w-t-f mate?" Then we went through a frozen embryo transfer (more mLs of medication). And now home medical life. We're constantly mixing, measuring, and injecting. I never went to medical school but I have most certainly earned a paperless degree in medicine.

To end this blog post, which was written during the kids' naptime, I should ask for forgiveness for spelling and grammatical errors because I have zero desire to edit this post. Also, thanks for following along to those interested. I mainly feel an obligation to update our family members with as much detail as possible, but I know others are interested in Bennett's progress. Even if this is all foreign to you, but you still take the time to read, I want to thank you! Thanks for simply reading and reaching out to me with encouragement.

The last thing that I want to make abundantly clear is that although we're out of the NICU, life isn't easy all of a sudden (although it is less painful overall). Ross and I have honest conversations sometimes about how much we just wish, for heaven's sake, that Bennett could've been full term. We know we wouldn't be facing these issues today. There are times when we have a pity party for two to sulk in the what-ifs. But alas, here we are, just trying to do our best. We absolutely appreciate every continued prayer over Bennett's health and even for Ross and I as the leaders of our two precious kids.

Friday, March 31, 2017

Motherly Instinct + The Sweetest Photo Ever

So y'all.

I've actually written several blog posts lately but for some reason never hit the 'publish' button. I guess that I keep thinking to myself that it needs to be perfect or that "what if this comes off wrong?" I am going to try and let my guard down just long enough to publish at least one post a week. Primarily because I want to keep everyone updated on our family and our day to day. I don't feel as eloquent with my words as I used to, so bear with me.


Before the meat of today's post, I'll start by posting something that I wrote in a different post which never got published:


"Last thing that I wanted to say is that I previously used this platform (my blog) as a way to write about really lighthearted things like makeup, mine & Ross' dates, and all things girlie. As if it hasn't become obvious, this blog is now much more personal as a way to update a mass amount of people about our life. Please bear with me as I'm knee deep in this funky phase of life. Love you all! Thanks for following our journey from TTC for two years, to IUI and IVF, and now to the micropreemie world."


Just getting that housekeeping item out of the way. You've been warned. If you're here for some easy reading, this isn't the place. I'm strictly here for updates and praise reports. 


I am not sure if I've ever shared this, but it's a pretty incredible thing; being a mom and all. All of the awesome things that come with mamahood are great, but one of the coolest things is something deeply rooted that only moms have. Sorry dads! I'm talking about maternal instinct. Yes, it really does exist.


The point of this post is coming. Promise. 


Premature delivery - I knew in my gut. In my heart. In every ounce of me; that when I started having complications, I knew what it meant. Every night, the Lord would hear me whisper a prayer begging for viability week. Lord, please just let my baby survive. Lord, I NEED THIS BABY. Of course I would never have admitted it during my pregnancy or week-long labor. "Speaking life" is something that is extremely important to me. I never wanted to harp on what I felt like was imminent because I know words and thoughts are powerful.

Swallow Study - Desperate for answers to Bennett's issues in feeding, I consulted my Micropreemie Mom group on Facebook. Real scientific, I know. After looking over the site for hours, I finally landed on something I could point to: a swallow study. This was the answer. I asked approximately 3 times while in our first NICU about them doing a test. I asked 2 NP's and 1 nurse. Their response was, "Bennett knows how to suck, swallow, breathe, so that's not necessary." They assured me time and time again that an imaginary lightbulb would flick on one day with his endurance in taking a bottle. Eventually, what I knew in my heart to be of importance *finally* was taken seriously and the second NICU we were admitted into performed a swallow study, which showed that Bennett was aspirating both silently and non-silently. 

Hernia - The look on the Speech Therapist's look said it all. She was surprised but I wasn't. Days before Bennett was scheduled for his g-tube surgery, I pulled aside our nurse and ST to ask if they would expect any complications during surgery now that they knew more about Bennett's case. I wanted to make sure there would be no surprises during his surgery. I kept telling them that I had this weird feeling a hernia would be found. They said, "no - we typically are aware of most hernias before surgery." Surgery was at 8am and by 8:15am, the doctor was paging me in the NICU. "Mom, everything is okay, but can you please meet me real quick." Our surgeon was in the middle of working on Bennett when she needed to step out to receive my consent to fix his hernia. I wasn't the least bit surprised and immediately authorized it. "Something" told me he had a hernia and I was right. 


Caffeine - "Only in rare cases, does the caffeine not work." Those were the doctor's words. He meant to help wake Bennett up from surgery. In Bennett's case, since he was oxygen dependent for so long, I knew having him breathe on his own was going to be the biggest hurdle. My gut kept telling me that time would be the only thing that would work. Sure enough, I was right. The team gave Bennett caffeine to help assist him in waking up, but it wasn't working. Of course I was on high alert, worried that my baby boy was needing a ventilator to breathe. But the caffeine didn't work, and I knew it never would. Bennett needed time instead and my motherly instinct knew that well in advance.


Other things which I had instincts about too, were Bennett's vision and his need for a continuous drip instead of bolus feeds. I'm just flat out too tired to write about all of that.

This mama instinct that I've had in Bennett's 6 months of life is proof that God was preparing me for each little thing. The Lord knew that I was the only one who could be trusted to take care of Bennett in the way that Bennett needed. Jesus planned it all. To dumb it down, I'm assuming the Lord said something along the lines of, "Let's trust Bennett to Allison Skinner, because she'll listen to what we (the father, son, and holy spirit) tell her and she'll understand how to best care for Bennett." There is no way on earth that I would've known each of the above would come to fruition without peace and knowledge being put into my heart. The Lord knew that Bennett needed a voice and who better to be the voice than his mom? I wish my poor baby didn't have to endure so much in his short life, but I will always speak up. I'm attributing my motherly instinct to the Lord putting that knowledge into me.

I'm starting to believe I'm the world's craziest mom. And honestly, it wouldn't even bother me if someone agreed. That won't stop me from doing what I feel is right. If that means being a helicopter mom and speaking up for those who can't speak up, I will do it.

Now that Bennett has been home 1.5 months, I've decided that: 1) I'm not willing to share him with the hospital any longer, 2) I have no regrets about "sounding crazy" to nurses and doctors regarding my son's care, and 3) NICU life is done and finished with and I have said goodbye to those awful memories. I see no reason to harp on where we've been because the *only* thing it brings is sadness, regret, and fear.

Life started on Valentine's Day 2017 when we were all under the same roof.

P.S. I realize that this blog is missing a big chunk of info from my last post until this post. The short version is: 1) we got discharged from one NICU very prematurely, 2) we got admitted into another NICU after being home for three days together, 3) Bennett had a g-tube placed & a hernia repair, 4) we got discharged from our second NICU on February 14, 2017.

Now that this post has been sufficiently long enough and I've (hopefully) made my point clear about that neat thing called motherly instinct, I'm going to end this post with the sweetest little picture you ever did see. Thank you Kim at Snap Happy Photography. We're in love with our photos!

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.

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! 
video
Thank you all for loving Bennett so well for the first 104 days of his life! 

Thursday, December 29, 2016

What Life Looks Like

Happy 39 weeks (gestation) to our bubba!

We have loved you for 97 days. We were scheduled to have a c-section yesterday but instead, my body forced you to come months early. No, you weren't ready, but you have made the most amazing strides. You are the strongest person that I know! Although your due date is 1 week away, we still have no idea when we'll get to bring you home. But once you are home, I refuse to kiss you any less than 1,000 times per day. I love you more than I could EVER love another little boy. Bennett, you are more than I ever knew I wanted.

To celebrate this awesome milestone (which quite frankly felt like we would never reach), I want to share the most special pictures with you. Thanks to the heart of another mama, we were given the gift of photos. Jennifer reached out and kindly offered to give us a free photo session documenting a teeny tiny piece of what NICU life looks like for us. Not pictured are the heartbreaking emotions that we sometimes feel while being NICU parents. BUT, pictured, you'll find the joyful part of the experience. I am so thankful that Jennifer captured these moments because I will F O R E V E R cherish them. I can't wait to share these amazing pictures with Bennett.

Despite this being such a difficult season, I have never felt more blessed in my 29 years of life.

Thank you all for cheering us on, and letting us share this intimate piece of life with you. The photos were taken when Bennett was 2.5 months old, and he is now almost 3.5 months old!