What. A. Day. I woke at 4 am- I know you are surprised I was able to drag myself out of the ultra-luxurious
bed vinyl couch I’ve been sleeping on for the past week. My thought was I’d take a quick shower before His Royal Highness woke up for a fun-filled itinerary of Bloodwork! NG Tube insertion! Gastric Emptying Study! Ole!
How is it that kids who are dead asleep sense when their mommies are attempting to spend 3 minutes doing something for themselves and then decide that it is URGENT that they be picked up NOW? Well, I did shower with a soundtrack of screams and then picked him up, and then really, he didn’t want to be put down the rest of the day.
He was miserable. No food or drink allowed due to the gastric emptying test that was supposed to be this morning- it didn’t end up happening until 1:00. On top of that, that mean lady with the needle came and stuck him- again- to draw blood for a thyroid test.
Then came the NG tube insertion. The original plan was to put the tube in after the gastric test, but in order to do the test, he had to drink 2 ounces of the solution, and they were skeptical if he would do that. Do down the nose the tube went. It wasn’t as traumatic as I thought it would be- G screamed through it all, but he’d been screaming all morning anyway. Since it was put in, the tube hasn’t really seemed to bother him at all. We did have to do an X-ray to make sure it went in his tummy and not his lung (um, yes, please make sure) and yep, everything looked good.
The gastric emptying test basically tests how fast his stomach is emptying after food is put in. Grayson hadn’t slept all day and had been crying nonstop, so I was confident he would sleep right through the 90 minute test, especially since I knew he’d be laying down. Well, what I didn’t know was they actually TAPED his little body to the board so he was in a weird little straightjacket and this meant NO THUMB. (Cue horror music). So he cried and cried for about 30 minutes and then settled into a whimper every few minutes just to let me know he was still dissatisfied with the current predicament.
So here’s the exciting part of this crazy day: WE HAVE AN ANSWER. The test showed that yes indeed, his stomach is emptying too slowly. This is probably causing him to feel full most of the day because the food is sitting in his stomach (getting old and stale). Then when he eats more, he gets sick. Also, (and this is just my own hypothesis sitting here thinking about this), maybe this is why he always eats so much better in the morning- the food has had 12-13 hours to empty from his stomach- and then his feeds get worse and worse throughout the day.
Even better news- there is medication to help this problem! We started it tonight, along with continuous feeds through the NG tube (1 oz/hour right now). Hopefully, with the help of the medication, we’ll get that food moving and we will be able to put some weigtht on that baby!
There has been no mention of us going home. We do know we will be here long enough to establish he can tolerate the feeds and that he is gaining weight. We also are waiting on labs and a possible genetics consult. I am happy to be here- the thought of going home with the tube (which we most likely will) is freaking me out right now. Thankfully, we will have home health care when we do, and I spoke to our pediatrician today and she said she would help me reinsert the tube if I need to. Also, I’m dreading being home because we’ll be back to our newborn-like days of being up every 4 hours (to clean the bag). Ugh.
So, our hardest, worst, and best day since we got here. I feel like we’re finally getting somewhere.
Oh I'm so glad you have an answer! That is wonderful. I hope the medicine helps his stomach empty faster and he starts gaining weight. You are amazing for getting through all of this with such humor and grace. I never thought I could be more impressed with you and yet I am every day. I hope the next few days bring some resolution!
So happy for some answers. And double happy that there are meds that can help, I hope that they do and you see some improvement soon. What a long rough week for you all. Continuing to think about you all continually.
Yay for answers!! I had to do the emptying test when I was in high school. I wasnt taped down and it was still uncomfortable. But thank goodness for answers. I will continue to pray for yall and the doctors.
Poor baby (and momma), but praise God for answers!! So thankful that today was productive, and that now it's OVER! 🙂 Continued prayers that he will tolerate food and that he will gain weight like crazy, so that y'all can go home asap.
Oh, E! These photos break my heart. What an amazing little trooper G is – and you, of course! Thank the Lord for answers! Please, let me know what I can do for you guys! Give a big hug to sweet G Force for me (and one for Larkin also!)
Elizabeth, thank goodness for some progress. I will continue to pray for you to have strength and continued help for Grayson.
I teared up seeing that picture of him strapped to the board. Poor baby. I'm feel so bad that he has to go through all of these horrible tests, but I'm so glad that you are finally getting some answers. He is an amazing little guy. ☺
Answers!!!!! I am thrilled that it seems like this could be a major piece of the puzzle regarding G's eating habits. What a relief!! These pics of your sweet little man… heartbreaking. I hate what he has to endure, just to get some relief. BUT, I'm so thankful there are doctors investigating the issues and pushing for answers! Please keep updating– we're all thinking about you guys, hoping that things improve and that you get to go home soon with a happier baby!
I am so happy that you got answers! Yay! I am begging her new docs for that test and am furious that they keep putting it off!Don't worry about having to go back to newborn days with changing the bag every 4 hours…This is what they tell you at the hospital. I've since joined a tube feeding awareness site on fb where they give you all kinds of hints. You can fill one bag with ice and put it with the other bag of formula, and sleep the night away. They nurses will give you reasons not to do this and I can tell you what they'll say, but the majority of people do what we do. (and here's a secret…we don't even use ice. We just fill it. Put her to bed. And then refill it when we go down. We use cold formula) It's been perfect, and you know that I am obsessive about doing things right. I'm happy that things are looking up!!!!
Enjoy holding him and snuggling with him- the best thing about hospitals stays are the normal activities of the day get put on hold and you can just love on him! 🙂 You and G are on my heart throughout the day!-Bridget
I'm so glad you got an answer but so sad about how the answer was gotten [those pictures were soooo heartbreaking to look at so i can only imagine being there in real life]. Hopefully this is the beginning of the road to baby chub!!!!!!!
God is Good! Answers that's exactly what we've been praying for! Can't wait to tell Cooper God heard and answered! Let me know how I can help once you're home!