No news is good news

Apologies for such a long time since the last post – but ultimately no news is good news around here! There have been ups & downs, but mostly we are heading in a positive direction. Terran is showing his third tooth, starting to eat solids, drinks water from a cup (with mama’s help), is riding front facing in his stroller now, and loves swinging at the park! Walker is on paternity leave this month and is really optimizing the dad-game! He’s getting out for urban hikes and stroller runs with Terran every day, rain or shine, and finding new ways to keep him engaged in our small home. Terran has had his g tube for nearly 5 months and therefore was ready to exchange it for a new one. We learned how to do it (it’s remarkably simple) from the surgery team and going forward we’ll be the ones to change it out for larger sizes as he grows.

Speaking of growth – Terran is up to the 10th percentile for his age! That’s the high end of the GI team’s expectations for short gut kids! He’s also smack dab in the middle at the 50th percentile for his length-for-weight ratio (think BMI) which is the GI team’s #1 metric to determine how many TPN calories he needs. His growth is so extraordinary that if the trend continues at our check-in next month, the team will reduce his TPN calories! THIS IS HUGE. In a way, the proportion of calories he gets from TPN has been reducing as he’s been growing (everyday he’s getting a slightly larger percentage from breastmilk and solids) since we haven’t been increasing his TPN as he grows. By reducing his TPN prescription, we will accelerate the transition. It’s possible his body will learn to adapt faster as he’ll need to absorb nutrients from other sources (food). We’re so happy to have this news and are looking forward to next month’s check up!

One way to support Terran’s TPN reduction is to get him more interested in solid foods. We’ve tried a variety of food types and textures. We’ve found he’s most interested in super pureed foods – which makes sense as the texture is easier to pallet and as far as his gut goes, the cooked, pre-processed foods are more readily digestible so he can extract more nutrients from them. So far sweet potatoes, carrots, yogurt, peanut and almond butters are his faves. The tricky thing is giving him enough solids that he gets familiar, but not too much that it clogs up his system. He likes drinking water which theoretically should help, but we’ve noticed sometimes his GI processing slows down (less poops, more g tube output). The doctor said that could also be a sign he’s still recovering from the blood infection he had in January. When kids like Terran get sick, they get really sick and take much longer to recover (“sometimes months”). Just as I thought we turned a corner, he had a large vomit, powerful g tube output and very few dirty diapers (bad combination). We’re paying such close attention that sometimes I have to remind myself that his body is growing and changing and there’s bound to be days and weeks where his body just needs something different. There are so many variables it’s hard to tell what is gut related and what is regular baby development related. What keeps me encouraged every day is that he’s happy and healthy (we have the benefit of monthly blood tests to confirm health – which he ROCKED this month). He’s laughing and smiling more every day, loves snuggles, plays in new ways with old toys (and random household objects), and makes us so happy. He’s challenging us as all new parents are challenged (and then some), and giving us back all the love and affection we could ask for. Every day is new and comes with it’s ups and downs but we’re loving going on the ride with him!