GI | poeticlaughter

Hello Everyone!

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!

The Tests

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.

The Solution(s)

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.

Medications

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.

Upright

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 Options

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!

Love Love,

Tiff

Yesterday we headed up to Akron Children’s Hospital for 2 doctor visits. Isabella was to see Dr. Nguyen who is a Pediatric Dermatologist for her Hemangiomas and Dr. Carter Kent, a GastroIntestinal Specialist to address her vomiting, pain while eating, weight issues, and liver ultrasound.

Hemangiomas, Treatment Is Working!

Last week we did in clinic time at Dr. Nguyen’s office. Isabella began propranolol for her Hemangiomas and she had a liver/stomach/etc ultrasound to rule out extra internal Hemangiomas. See this post to see what they are and why we’re treating them. We began 0.5ml of propranolol and so far I’ve noticed a difference on her scalp birthmark. It seems as if it is shrinking. It is still sore, but doesn’t seem to be growing. Bella hasn’t had any adverse reactions to the drug. Her hands/feet get colder and she seems a tad bit sleepier, but so far, so good. We arrived around 8:30am after an hour and a half drive and got everything packed up. After running to the bathroom we went to the office and then were brought to an exam room. Bella’s vitals were taken and Dr. Nguyen visited with us and checked in on how her medication was going. We also apply a antibiotic cream to prevent infection on the ulceration three times a day.

Mom feeding Bella in clinic. Isabella’s Hemangioma is looking smaller!

This is how we feed Bella at the hospital and when traveling. She has a feeding pump and a bag of formula hung in the backpack!

The doctor then had us give Bella the new dose of 1ml of the medication. Bella can’t take medications by mouth so we use her gtube site. I pull up the medication with a syringe and then use the extension set to give it to her. We flush it with formula. We time it so that she gets her feed at the same time as her medicine. I set up our pump for the first time away from home and we used the backpack. It went really well. My mom held Bella while it went in. The nurses came back every 30min to check Bella and her vitals. She did great. At that point we were cleared to leave and headed straight to the GI department. We will continue to give propranolol and the cream every day and we will see them again in a month. Isabella will be on this for a least a year. We are hoping to avoid laser treatments and/or surgery!

GI, We Need To Rule Out Some Things

UPDATE: We received Isabella’s blood work today and it all seemed within normal ranges! This should rule out diseases/cancer. One thing down, now, the anatomical issues left to rule out. Praise Jesus!

It was our first time meeting with GI. Bella has always spit up to a degree but nothing like she’s been doing recently. We have seen our pediatrician and tried two different medications, a formula change, and a pump, and nothing seems to be helping. This is very critical since Isabella is less than 1% in weight for her actual age. She is not gaining appropriately and throwing up, choking, spitting, gagging, and in pain when she is fed.

I loved Dr. Carter Kent. Instead of tears and terrified questions I was excited for answers and knew we were in the right department. To begin, they weighed Bella and took her height. Then the doctor joined us and got a quick history of Bella’s eating and nutrition. To some degree babies have reflux and will spit. This is especially true for preemies. BUT, it becomes an issue if 1.) They’re in pain when they eat and 2.) They aren’t gaining weight. Bella checks both of these boxes.

Mom reassuring Bella after her blood work.

I told her everything. How Bella projectile spits (she said that’s vomiting), she’s in pain when eating, we can’t put her down without her throwing up, and we have concern she’s aspirating since she can’t take formula by mouth because of silent aspiration. It’s getting worse by the day and it’s almost a given she’ll throw up after a feed now.

She said we have lots of options still and not to be discouraged. To begin, we will rule out any anatomical issues, organ function issues, and things such as cancer. From there we can continue to run tests and try other things. She even mentioned a GJ tube (another version of a Gtube that also goes into the intestine), crazy specific $$$ formulas, and continuous feeds. She certainly thought it was more than just reflux.

I, of course, am very scared of cancer. Liver cancer is one of the most common forms of pediatric cancer and a low birth weight is a risk factor. The Dr. explained that the liver ultrasound (which we had done last week to rule out internal hemangiomas, but had a secondary finding on her liver) probably was just referring to her prematurity and that she had good tone, wasn’t jaundiced, and was peeing and pooping. These are all reasons to rule out cancer. This made me feel much better. We will still do blood work, but it’s highly unlikely. (Update: Blood work was normal!!!)

Tiny Baby, Big Upper GI Scan

Isabella being goofy and having fun before testing

So, after meeting with her, we called down to radiology and scheduled an Upper GI scan and blood work. Poor Bella was already hungry and tired. The GI scan wasn’t terrible, but it was quite scary seeing such a tiny baby in a massive adult sized machine. I should’ve brought my phone to catch a picture, but I was pretty occupied carrying Bella and making sure she was comfortable. They pushed barium through her gtube extension and 3 techs positioned her in different ways during imaging. She wasn’t happy and cried and fussed. I tried to talk to her and get her to calm down but she was just frustrated. It didn’t help that one of the techs didn’t realize her birthmark was sore and bumped it, making her cry, on accident. Many people get confused as to why Bella can’t be soothes with a pacifier. She will gag and throw up. Some don’t listen to me and try to “offer a gloved finger” to soothe her. She freaks out. I’m glad this tech listened and respected that she only likes sucking on her own fingers. She calmed down!

Blood Work and Many Tears

We ran out of cute coordinating outfits since she threw up on all of them. This is after her blood work.

Right afterwards my mom and I decided to take her across the hospital to get her blood work done. It was best that she hadn’t eaten so she wouldn’t throw up and choke while getting stuck. I wasn’t too anxious about it ….until we went in. Since they needed a bigger sample, they couldn’t do a heel poke. Instead, she had to get a big needle in her tiny arm. The one lady looked at me and said “this job is hard on the heart.” Tell me about it! Bella was so happy and cute until they tightened the rubber band around her little arm. She squealed and tried to get away. All three of us had to work together. I placed my forehead up to hers and talked to her and prayed. The needle was very big and she screamed and screamed. My hands were sweaty and both women were having a hard time, too.

Eventually, one of the ladies muttered that the blood wouldn’t come out. it was the worst thing I could hear. We released the rubber band tourniquet and Bella took a breather. I began crying as they moved her tiny body around facing a new direction and inserted a new needle after using another tight rubber band. This time Bella screamed even louder. Gasping and kicking. I’m crying pretty hard at this point.

As they’re doing this, I think: No parent should ever have to experience this. No parent should ever have to wait for a call to rule out cancer or tumors or liver issues or brain bleeds, or traumatic brain injuries. Yet, we’ve been there. And we’re here.

I wanted to check out. I wanted to walk out. BUT, I’m her lifeline. I’m her steady. I’m her mom. I wiped back the tears and continued to cheer her on. Oh what a warrior! Oh what a brave baby girl! I was so proud to know her in this moment. So proud to have carried her. So proud.

We pushed through the final bit and they began wrapping her arms in bright yellow gauze with bumble bees on it. How strange, I thought. That they’d pick an animal that stings?! Isabella laid so still I thought she may have passed out. Nope, just exhausted from fighting the pain. Her little body was so limp as I scooped her up off the table and held her to my chest, careful not to rub her newly placed gtube (oh yes, we had an ER visit after her tube fell out last Thursday) or painfully sore arms. I walked out of there and into the lobby. My mom was sitting and looked up. She could hear Bella screaming the entire time. She said she’d never heard her scream like that.

I have.

I’m praying this will be the last time.

So, today, we’re waiting to hear from the doctor. I feel peace and think the tests will be OK and that we’ll just be battling some reflux or food intolerance. There’s a slight possibility we could be hearing some of the scariest news of our lives. Or maybe somewhere in between the two. Perhaps she needs another surgery? I grab my stomach as it drops. Not another surgery. Yet, there are some who would dream of only having two on their record. And there are some who pray every day that a surgery could give them one more day with their child.

Tired girl. One more outfit change left.

I struggle. I’m not perfect. I want Bella well. I’m sick of being scared. But I try to refocus on God and his grace and his promises. You see, he loves this little girl even more than I. He cries when she cries. he hurts when she hurts. He’s here and He knows what those test results are. Thank you for reading and being there with us in the trenches.

XOX Tiff

GI

Isabella’s Vomiting Answer (For Now)