So this is what it’s like

So this is what it’s like to have a happy baby!! Walker and I nearly cried the first time Terran looked up after a true breastfeeding – smiling from ear to ear! We’re in an entirely new chapter now. But I’m getting ahead of myself! Rewind to last week…

Oct 27 – Terran gets an antibacterial sponge bath to mitigate infections. He gets his last 10 ml “feed” at 8pm.

Oct 28 – Surgery day! Terran is 3 months old. We get to the hospital early in the morning and go through the lengthy pre op procedure. All the while we’re marveling at Terran’s mellow attitude. I was expecting full fussiness since he hadn’t had his small soothing binky feed in 14 hours. He must’ve been just as excited as us that surgery day had finally come. After meeting with the surgical team and going through the plans, we blanket him with kisses and hugs and leave him in the hands of the team. Walker and I distract ourselves with cafeteria breakfast before heading to the waiting area to sit out the rest of the time. Luckily the doctor was able to follow Plan A the whole way through – he successfully placed the g-tube laparoscopically (using cameras & long tools through two incisions) instead of completely opening up the belly. We were prepared for Plan B since Terran has already had abdominal surgery and it was possible scar tissue could’ve blocked the typical route. Plan B would’ve come with a spinal tap for pain management which sounded extreme vs. the acetaminophen of Plan A. Very thankful for the skilled hands of our surgeon and anesthesiologist! We also had great nurses in the post op room. Terran’s best Children’s nurse friend was with us overnight and we all squealed in delight when she came through the door 🙂 Good thing because that first recovery day was VERY difficult. We had never seen Terran so uncomfortable (and that’s saying something for a kid with constant gut stress and two prior surgeries under his belt). Since we couldn’t put pressure on his abdomen, there were limited positions we could hold him in which only added to his frustration. With a couple “whiffs” of morphine, consistent Tylenol, and caring nurses, he made it through.

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Oct 29 – Two things to do before we’re discharged: 1) get trained on g-tube management and 2) meet with the surgeon for a post op check and first g-tube access. The surgeon had a busy day so we didn’t see him until the evening. I got to be the first one to use Terran’s g-tube and it was so… loud! A literal “burp” sound popped as air escaped his belly. It was so rewarding to see the relief on his face afterwards! He had a couple spit ups in the car seat on the ride home so we’ve learned it can take some time for everything to release. It’s not a silver bullet, but it sure has power. We get home around 6:30pm, change his TPN, hook up the g-tube and immediately breastfeed. The atmosphere is electric – we’re all so stoked to give Terran what all other babies have had for 3 months – FOOD. When he decides he’s done, he looks up at us and gives us the biggest smile we’ve seen! We know this is a turning point.

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With the g-tube hooked up, it drains excess air and fluid from his stomach so he can actually eat to satisfaction. It can also relieve pressure on his small bowel which can aid in rehabilitation and mobility. He still has small spit ups occasionally, but now that’s just a warning to hook him up and release the pressure. It’s crazy the volume we get… the challenge is balancing how much we remove to keep him comfortable but not tip over to dehydration. We’re in clinic and get blood tests every 2 weeks so we can monitor his electrolyte levels. In the meantime, we’re watching his skin to see if it gets dryer than usual.

In its most basic state, the g-tube is just a “button” on Terran’s belly. We pop the hood of a valve and insert a specific tube to allow it to “burp”, “overflow”, or “pull” air and fluid out. The end of the tube can either be a bag (for fluid capture) or an open syringe (for air release). Hold the container above his belly and it’ll “burp” mostly air and some fluid that gets thrown out. Keep the container at belly level and it’ll capture “overflow”. Place the container below his belly for gravity suction and gently “pull” contents out. We’re still experimenting to find out what he needs to be comfortable while not overdoing it. Every time we access the port in these first few weeks, there’s opportunity to “twerk” the hole and cause it to stretch or deform. Over time, that’ll create a worse seal and allow leakage. After the wound has healed, we don’t need to be as careful. The future state is something akin to an earring piercing hole – it’ll be smooth skin that can even “close up” once we remove the g-tube for good.

Walker and I knew we were getting better with TPN but it didn’t really hit home until we started caring for the g-tube. We used to have to pause and pay attention to grab his backpack every time we moved locations. Now the backpack is already on my back before I know it and I’m focused on minimizing any g-tube twerking. There’s a new tube on the block 😉 It helps that Walker and I have settled on a good loop orientation under the central line dressing that provides protection again yanking on the cord and eliminates the occlusion we used to see daily. It’s amazing how far we’ve come in just 3 months. I’m thankful to have the privilege of taking so much time off work to focus on Terran. We’re still not exactly sure what childcare looks like when I go back to work in early January, but we should have a teachable formula worked out for care of his lines. We’ll likely look for a nanny with good attention to detail.. pass on any references if you have them! 🙂

On the fun side, we’re still going for daily walks and looping in other moms and babes when we can. Rain or shine, Terran gets fresh air every day. A couple great meet ups were with our pregnancy parenting group (shout out to my #CenteringFamilies!) at local parks. The most recent was on Halloween (we all admitted it was our ONLY Halloween plans haha!) and it was fantastic to see all the babes in their cute costumes. Terran wore his NASA commander outfit, inspired by another Centering babe friend. I underestimated how helpful it would be to have a community of parents to share experiences with. Our Centering group has been more than I bargained for. I know we’ve made some friends for life. Since those friends are all North Seattle based, we also joined a local West Seattle parent group and have met some great people there as well. While there are undeniable benefits for meeting families in person, the virtual/zoom format makes a lot of sense with newborns (the “mute” button is a fave for fussy kiddos).

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Medical mama brag: on a recent journey back from Vashon Island our ferry got cancelled last minute and we had to do TPN in the car. Super boost to our care confidence having everything we needed and pulling it off!