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.

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.

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

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

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.

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