It’s so hard to find the time to write…but I make it happen.
Tonight it’s either a bubble bath or writing a quick update…and I think an update is overdue, especially with the new feeding schedule we’ve acquired.
Isabella is doing very well! We have been doing continuous feeds overnight for about a week now. She is sleeping through the night and seems to be growing so much better. She doesn’t vomit at night as much and seems to be able to sleep peacefully while being fed. That’s crazy!
Below are a few “real” posts about Isabella’s struggle
This is what a life looks like with Bella. It’s so hard to see her in pain, but we are so glad she is improving. I wanted to share some “realness” with you to get a small glimpse into our daily struggle.
Although her tummy still gets upset and she does vomit, it’s not as much. Bella moves more and thus has a pretty good aim for mommy/daddy’s face. Here Bella projected all over the couch and Dustin’s mouth! Ew!
She’s in pain a lot from her feeds. Here, below I captured her hurting. We can’t not feed her, so we have to pause and restart her pump until she can handle it.
Above is the amount of laundry we have after just one trip to Akron Children’s Hospital. There are usually at least 5 burp cloths, a change of clothes for me and her, and blankets.
Every night we change Bella’s bedding (before continuous feeds) sometimes up to 5x a night. Currently we only change it once! Above you can see we are changing out her clothes, burp cloth, and bedding.
Below, Dustin helping to soothe Bella and catch her vomit.
It’s certainly not glamorous, but we do our best to keep a positive outlook. We use a ton of baby wipes and burp clothes. Bella’s still too tiny to give a bath every time she vomits or else she’d be burning a lot of calories she desperately needs to grow.
The Current Diagnosis
Currently the Gastroenterologists have agreed that Bella has severe GERD/reflux and a premature GI system. We did many tests to explore her vomiting further and nothing critical came to light. At this point, we will settle with the diagnosis. Of course she’s not gaining as well as she should, but she is gaining! We will celebrate this!
We did the following tests to rule out anything underlying. Full blood work, Upper GI, Gastric Emptying Test, PH Probe, Barium Enema, and multiple Xrays. Her care team and I agree that there’s no need currently to do further testing, such as a scope.
Our current solution to her vomiting and not gaining as well as she should is the following:
Her Special Diet:
Her formula is fortified to be 30 calories per ounce. We use Elecare which is hypoallergenic and easy to digest. We also add Polycal which adds calories. During the day we mix in Beechnut Rice Cereal.
Continuous Feeds/Bolus Feeds
We now do continuous overnight feeds. That means Bella gets fed from 10pm until 9am. I’ll have to write much more on this. This is a great solution because she can handle a small amount of formula while laying down. This also ensures she’s getting nutrition without throwing it up. She receives 330ml and gets 30ml over an hour. We wake up to refill the bag and also to change her diaper twice. She can usually sleep through it…or wakes up, smiles, and goes back to sleep. She usually vomits once per night.
Bolus feeds, or one time larger feeds, are given three times during the day. They happen at 12pm, 4pm, and 8pm. We give her 75ml over an hour. Sadly, she is throwing up quite a bit during the day still, but we know the continuous feed overnight helps make sure she’s not losing too much.
Isabella is on medications to help manage her GI issues. She takes both Omeprazole (commonly recognized as Nexium/Prilosec/Etc.) and Famotidine (otherwise known as Pepcid). Both of these work together to help her stomach acid and relieve her stomach upset. Omeprazole blocks the acid production of the stomach and Famotidine, which as I understand it, decreases the amount of acid.
Bella throws up when she’s moved after a feed. To combat this, we hold her upright for at least 30 minutes after her daytime feeds. If we sit her down too soon, she usually vomits. This makes each feed at least an hour and a half. One hour for the pump and 30 minutes to hold. I don’t mind cuddles at this point, but she’s getting bigger and wanting to move around more!
Many of you asked about her esophagus muscles. We asked as well. We know they are premature and not developed well. This means that she’s unable to protect her airway or keep food down. We know this from a swallow study we did in the NICU. That being said, the specialists have explained that this will improve in time and there’s no need for surgery.
Thanks to some amazing friends, (Thank you Mr/Mrs. Hower!) we now have a sit-me-up-seat that can help her eat while playing. I’ve been working with her to get used to it and so far she loves sitting in it. Hopefully soon she can eat while in it and not fall asleep!
Other solutions are still on the table for Isabella. We can switch to continuous feeds all day and all night, utilize medications that help her stomach empty faster, or have a GJ tube inserted in place of her current Gtube. For now, we are going to continue with the overnight feeds and pray we can avoid other options. Of course we are willing to explore them if needed.
Thank You & Not Being Able To Respond Sometimes
Thank you again for all of your love and support. I’m so sorry I’m not able to fully respond to all comments. I try to but sometimes I’m just so busy! I read each one and am so moved by all of your continued support and love for Bella. I am so excited that as she gets bigger she can meet many of you!