Sooooo there will be setbacks. I should expect that. Terran’s replogle went back in today. I felt my first mama-infuriation this morning when I saw it because we weren’t warned this was a possibility. It’s so irritating to Terran and we were so excited to be past it that it was a serious shock to see it back in place. After talking to the surgeon who made the call, it makes sense and I’m on board, but I made it clear Walker and I expect to be contacted before there’s a change to Terran’s care. He was receptive to that.
Terran gets the replogle back for a couple days because the vomiting shows there’s still stuff that’s needed to be expelled. What the docs are watching is the super-dilated small bowel. It needs to shrink back down to provide any meaningful muscle to push things through and absorb nutrients (even if just a little bit). Terran’s body isn’t dealing with its own secretions very well, so it’s not a great idea to add more into the mix (like feedings). The replogle takes some of the pressure off the small bowel and gives it a better chance to heal. We’re at the maximum inflammation stage after surgery, so a couple days on the replogle couldbe enough to give the system a chance to breathe and start restoring. Terran is an “orange” in an “apple” world. Typically short gut surgeries remove all the dilated bowel and sew together the remaining good bowel. Terran didn’t have that option because his dilated bowel is his only bowel. So there’s no reference for how long recovery could take. Could be weeks, or months more.
Terran was moved to the level 2 NICU (from level 4) a couple days ago because level 4 needed the bed. That’s good news in a way because it means Terran was in good enough shape to move ahead to the less-intense floor. He gets extra attention now- he’s still overseen by the level 4 docs plus he gets bonus attention from the level 2 crew. What a VIP!
Emotions were strong today… from intense protection (seriously, I was ready to go to battle to get that replogle out if I didn’t agree with the surgeon) to longing sadness realizing this could be a long haul for Terran before we’re able to give any meaningful relief. That said, the surgeon is very into getting Terran even tiny amounts of colostrum ASAP. We talked a bit about proactive gut health and while probiotics aren’t proven/approved in newborns, colostrum is his best bet so as soon as he can tolerate even the smallest amount we’ll get him going. He’s loved getting binky dips the past couple days so that’s exciting! We’ll keep doing that since most of it stays in his mouth so it won’t impact his small bowel function.
Today was a reminder that we’re moving at Terran’s pace. Even though he looks so healthy on the outside and he barely ever complains, his insides are overwhelmed and need time to heal. We’ll get there… we just need to expect a step back every so often to stay on the right path.
Transferred from Caring Bridge 8/19:
Mary Ann Pancheri : Thank you for all of the information. I feel as if I know so much more of what Terran is experiencing since you started your journal. He is so bright-eyed and wants to cooperate so his insides will work as soon and as fast as possible. The three of you are a very strong team! My prayers are going out to you all!
8/16/21
Patty Stratton : Such an education we are all getting–you are a great teacher, Jacqueline! I felt every emotion with you, Jacqueline–although the doctors seem to know when, what, where, and why…the information should ALWAYS go through you and Walker first. I love seeing the “Momma Bear” in you! So we slow down a bit and give Terran time to fully recover from his big surgery. The rest is all great news with him moving to a less intense floor and getting care from the Level 2 crew. The three of you are such a STRONG team. What a wonderful life you are creating together.
8/16/21
Phyllis (Gramma) Goodwin : Yes! There will be setbacks. Unfortunately, you’re finding that out the hard way. But, as you’ve pointed out, Terran is very strong and he WILL pull thru this. Too bad it’s going to take time. Terran will let you know when. Remember his Guardian Angel is looking over him and you. You’re so strong and I’m so proud of you, all three of you! God Bless!
8/15/21
Ellen Jones : Frustrating but sounds necessary. Hopefully you will be included in future decisions and not blind sided as you were this time. Please know that you are in our thoughts and prayers. Terran is a fighter and is truly amazing!
8/15/21
Kathleen Stambaugh : I’m sure Terran feels your love every time you’re with him. Just look at those eyes and smiles! You have a good team caring for him, and Terran is resilient. Thanks for your heartfelt explanations. We are here for you. All our Love, Grammy and Grampy. 🙂
8/15/21
Michael Goodwin : hang in there, you guys are amazing and even though you know it is uncomfortable for Terran he seems to be handling it ok, good news on the move to level 2!
8/15/21
Lisa Huget : You guys are amazing and strong, Terran is such a trooper. Thanks for the detailed information. Praying for wisdom and healing.
8/15/21
Chris Jones Middlebrooks : I can send enough virtual hugs! You are all so strong.
8/15/21
Carrie Oliver : Oh my honeys … you guys are so brave. The look in Terran’s eyes tells me he is taking this in his stride! He has you both by his side and he is loving it! Thank you for sharing your optimism in these happy and sad moments. We are with you❤️Nana
8/14/21
Lindy Oliver : Terran’s steps forward are so strong and significant. I’m so sorry for this set back. It’s a reminder that his little body needs time to rest and heal.All my love and the best hope ever.Always,
8/14/21
Cecelia Cutler : Anger is a very understandable reaction. You have been through a lot. But a war is never won in the first battle, and in your informative post, you actually explained it to yourself, and us! Thank you for these details posts and the most ADORABLE pictures of Terran. I think he’s actually wondering why that thing had to go in again too! Still praying for his progress…✝️
8/14/21