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.

2 comments:

  1. What a cutie pie he is! You have a beautiful family. I haven't been in this position but I know how hard raising a toddler is at times so I can only imagine how difficult it is to navigate sweet Bennett's needs and also love on that sweet girl. Prays for Bennett's health to continue to improve and for you guys also.

    ReplyDelete
  2. I'm so happy to hear that Bennett is thriving! I hope your SLP is AWESOME :)

    ReplyDelete