Our Past Few Weeks With Tulla

We have not had a health update here in a hot minute. The problem is that when Tulla is going through something, and I'm not sure what it is, or what it might lead to, I tend to shut down and not know how to write about it. I don't want to prematurely update people when I don't really know what's going on myself. There's so much that Tulla has to deal with on a daily basis. I'll rewind a bit here and walk you through the past few weeks.

Tulla's reflux has always been problematic. She's been on one medication for it for a while, but it seemed to be getting worse. She was basically sleeping while sitting upright and propped against me, and constantly burping up/swallowing spit up. This is especially concerning to me, because she's most likely aspirating on the stuff coming up from her stomach. All thin liquids are dangerous for her as far as we know. That's why she has a G tube in the first place.

After talking with her GI, they added another reflux medication. So I'm currently waking up half an hour before her first morning feed to help it settle and coat her stomach, so it's as effective as possible. She tried it for a week, and I definitely noticed improvement.

By the end of the day, it was still not enough. Her nights were still filled with discomfort and endless restlessness. The plan is to change it to a stronger medication that can be given twice a day instead of once. We're currently fighting insurance to switch it. It's been two weeks, and they have denied it, so we'll see what Tulla's GI decides to try next.

While we have all that going on, Tulla's breathing continues to sound labored. Her oxygen levels have remained stable (thank you, Lord!) But every cold she catches turns into a weeks-long process of trying to clear her lungs. She is all smiles and sunshine, but we know congestion is sitting in her lungs that shouldn't be there. She's also started wheezing worse even with all her inhalers, so that's a stressful development for me.

It starts with a week of noticing her breathing sounding off. Then I send a message to the pulmonologist letting her know that Tulla is otherwise healthy. We start a nebulizer plan, or an inhaler regimen, and when those don't work we try antibiotics, which tend to work best.

This time we didn't do the liquid steroid first, we tried a duoneb, which combines albuterol and another medicine. I didn't know there were so many different ways to give a baby medicine. We did the nebulizer every four hours for a few days with clapping therapy. I take a small silicone cup and clap her front and back of her chest for 5 minutes on each side. It's supposed to help break up and move the junk stuck in her lungs. She doesn't mind the clapping, but she hates wearing the nebulizer mask.

It definitely breaks things up. We can hear the noisiness. But it doesn't clear it. So after more discussion with her medical team, we're almost a week into a three week course of antibiotics. Did you know liquid antibiotics are only good for a week after they're mixed? It's a good thing I don't live far from Tulla's pharmacy. This is her third round of antibiotics in the past six months.

I wonder almost every day if I'll have to take her back in. I worry the noisiness will grow into something more serious, that her oxygen levels won't stay okay, and that she'll end up back in the hospital. I wonder what we'll do if the antibiotics don't work this time. I don't know what the future will hold.

There are so many components to her health and her care. This mama is exhausted. Through it all, Tulla remains the happiest little one. Her smile is bright and cheerful. It makes it all worth it.

Watching her grow and hit milestones is especially exciting. While she doesn't crawl in the traditional sense, she does get around. The other day, I left her with her brothers for one minute, and she managed to get into the dog's water bowl. She's starting to use more words and phrases. She plays games like peek-a-boo, so big, and she loves waving to anyone who looks her way. Seeing her explore the world is amazing. Our days are always a rollercoaster, but I love every minute we spend together.