It seems like just yesterday that we left the NICU at Akron Children’s Hospital. I have very many mixed memories of that place. Some of the scariest times of my life happened behind those walls and some of the happiest.
In the midst of a dark time we did our best to make the NICU home. Years ago I bought an art print that says, “Home is wherever I’m with you.” (Yes, it was bought from Urban Outfitters and Edward Sharpe and the Magnetic Zeros were popular…ok now listening to them on repeat).
Since our marriage, Dustin and I have moved six times. It’s funny to add “NICU” to that list. We spent most nights there but spent 17 at Ronald McDonald House and once a week at home to rest up. I plan on writing a lot more about making the NICU home and our experiences there. In the meantime, enjoy this video I took near the end of our stay. You can tell Bella is much more stable and is even in an open cot!
(Of course I’m just posting this. So, the date this was written was a bit ago and the dates we were in the ER were August 2nd and July 26th)
Thankfully, we were not in the ER today. But, we spent time there twice within the last two weeks, one week apart exactly. Why? You ask? Because Isabellas Gtube keeps falling out!
For me, blogging has been very therapeutic and helps me get my thoughts organized. Having a daughter with numerous health issues is overwhelming. One of the things I found when we lived in the NICU is that there are lots of resources about preemies but not many about G tube’s. So, I decided to begin blogging about her G-tube journey so that other moms might find it useful. This is also a great way to keep family and friends updated.
The Dreaded Day Bella’s Feeding Tube Fell Out
Bella has a G-tube and we were trained on it in the NICU. I felt pretty confident about things except for replacing the button at home. I knew it would just take some getting used to. But I’m quite squeamish and looking into a hole in your baby’s stomach can certainly freak you out. We’ve become quite comfortable with this little button. We do hook up to feeds eight times a day. So, when her feeding tube did fall out we were prepared.
It was during her for 4:30pm feed. I noticed Isabellas button looked loose. We were going to vent her which basically means let air out of her belly. She was crying and the button was being pushed out. This is pretty normal so I didn’t think much of it. When she cries the pressure in her stomach can push the button out. It’s not really something to be scared about. I mentioned it to Dustin who was with me. He didn’t think it was anything to worry about and continued hooking her extension to the button. I thought maybe I was being overdramatic and looked away for a second while he hooked her up. Before I knew it I heard him yelp and I looked down and the extension was attached to the button and the button was completely out of her stomach.
I looked down and saw the hole and immediately remembered what to do. Dustin ran and grabbed the emergency kit while I held pressure on the stoma (medical term for hole). Luckily Isabella hadn’t eaten for awhile so the stomach contents weren’t pouring out. She was unhappy but didn’t seem to be in pain. There was a little blood from her granulation tissue but nothing crazy.
Bella sleeps on the way up to Akron. You can see the catheter hanging out on her side.
Dustin came in with the emergency kit in his hand. We prepare emergency kits with catheters in them in case the button falls out. It is a short-term fix to keep the hole open until we get to a surgeon who will replace it in the emergency department. Eventually we can switch out the button ourselves but since the hole is still healing, our surgeon instructed us to bring her to the emergency department at Akron Children’s Hospital. He told us the hole could close within 30 minutes and that it would be painful for them to reopen it. So there certainly is urgency in getting something in the hole to keep it open. There are only three people who are supposed to be able to change the button, Dr Pittinger his partner, Dr. Andrews, or their surgical resident.
Dustin took the catheter and put a small amount of lube on the ends and inserted it into her hole then using a syringe we filled the end, which is like a balloon, with a measured amount of water to hold it in place. Once we made sure the amount of water was correctly in, I taped gauze around it and attached it to Isabellas shirt to keep it from pulling out.
Dustin ran downstairs to our office in the basement, (he works from home) and told his coworkers he would have to leave for the day. We are really lucky this happened near the end of the night so he didn’t have to miss a lot of work. We packed everything we needed to drive Akron Children’s Emergency Department which is an hour and a half away. I made sure we had formula, extra syringes, extra extensions, and all her medications.
Waiting for a short minute in the ER
We placed her in her carseat and used a button down to pull the extension out and lay it gently beside her. The ride to Akron was pretty uneventful and she actually slept away. She was getting hungry because she didn’t get her feed. She doesn’t take anything by mouth so if her G-tube is out we can’t give her food or her medications. We called family and I also contacted a friend who is bringing us dinner. We told her to still bring it and Dustin’s parents would pick it up and put it in the house for us. They were already planning on being over because they have been mowing our lawn for us! On the way I called the Emergency Department and told them about Isabella and they contacted Dr Pittinger and his surgical resident. We explained Isabella was medically fragile and they said they would be ready for us when we arrived.
A diagram of what the button looks like in place and how the button sits under the skin. Photo Credit: University of Iowa Stead Family’s Hospital, https://uichildrens.org/health-library/gastrostomy-button-g-button
What Isabella’s button looks like outside of her stomach. Photo Credit: Newcastle Hospitals http://www.newcastle-hospitals.org.uk/services/childrens_health-information_low-profile-balloon-gastrostomy-device-mini-button.aspx
Why’d It Fall Out?
The feeding button fell out because the balloon holding it inside of Bella’s tummy deflated. This can happen if the button is old, punctured, or if the water is evaporating. To be honest we’re not sure why Bella’s button deflated completely. We asked the surgeon and they don’t know either. This was frustrating, but we were happy to know she had a new button in.
***warning graphic photographs, not for the squeamish***
Best Emergency Department Visit Ever
It’s strange going back to Akron Children’s Emergency Department because we lived in the same building for over 100 days. The NICU is on the sixth and seventh floor. When we staying in Isabellas room up there, I remember countless hours staring out at the city and listening to the ambulances go in and out from the Emergency Department. We knew the area like the back of her hand. We walked into the Emergency Department and as soon as we said her name we were ushered back quickly into a room where they did an intake on Bella. Then they took us to a private room and the surgeon walked in with in six minutes. They ordered as a new button change kit, even though we had our own (which saved time). It was nice that they moved so urgently.
Isabella lays on the hospital bed, waiting with the catheter in for her button to be replaced. You can see the red marks where the tape was pulled off. Here she has her catheter in.
All the while, Bella was getting pretty hungry. The resident walked in, sterilized, gloved up, asked a few questions and began assessing Bella. He asked if we wanted to put it back in, but we said no. I felt it was too far away from the official “heal” date of August 22nd. I also felt that if there was something wrong he would be able to tell. Within a few quick minutes he pulled the catheter out and inserted the new MiniOne button. Bella cried a bit when he accidentally tugged on the catheter, not realizing it was inflated inside her stomach (rolls eyes).
It was a quick quick thing. The button is inserted and then filled with water to keep it in place inside her stomach. You have to measure the water correctly so that you know how much is inflated inside of her. For Bella, her balloon takes 2.5mls. After awhile you memorize it and know to check it to make sure it has the right amount. Isabella doesn’t seem to be in pain during the change and was just annoyed someone was bugging her and hungry. As soon as we go the new button in, the surgeon made sure it the placement was correct by pushing fluid in and taking it out of the tubing.
Up close look at Bella’s stoma (medical term for hole). You can see the fluid and granulation tissue.
We were able to stay in the private room to feed Bella. To feed her on the go, or in this case, an emergency, we put her speciality formula into a 60ml syringe and attach it to her extension cord. We then push the formula into her stomach slowly. She doesn’t tolerate this well and usually throws up. Unfortunately I didn’t have time to fully pack the pump.
A quick fix! This is the surgeon inserting the new button.
They Know Us
We were exhausted. We ran out of the house in a rush and were hitting the wall. We were so glad the ER visit took so little time and we were home before 9:00pm, but we were hungry. We walked in and saw a gift bag for us. Our friends Molly and Anthony Pingitore and their precious girls had prepared us dinner. We had a delicious chicken casserole, salad, cookie dough and green beans! While we prepared to feed Bella again we opened the sweetest card from them. Dustin and I both tried to hold back tears. It said lovely things and also had gifts for us. A gift card to Sephora for me and a gift card to Chipotle for Dustin.
Bella sleeping after her button is changed.
We fell into the couch after sanitizing and digged into a delicious meal. We both prayed out loud over Bella and our family. I know Molly and Anthony provided these things but I just felt the biggest hug from God himself. Not only did he provide the necessities (dinner), he provided chocolate chip cookie dough (we each grabbed some raw) AND a special gift for each of us. This was a very thoughtful gift since money’s rather tight and I don’t just go shopping for makeup. My foundation was running low and I wanted a new lipstick for my friends wedding. God used Molly to provide such a fun “extra” gift. That’s what I love about our Jesus. He cares about the little details that make us US. Thank you Molly and Anthony for allowing the Holy Spirit to work through you and for being so generous.
Special gifts from friends.
The rest of the week we also received some amazing meals and gifts from others too! God’s awesome.
Anyway, as soon as we took a sigh of relief, and things felt “in control” a week later to the day her button fell out again and we did the trip/process all over again. This time, though, we got some good information and (spoiler) approval to change the button out at home from now on! See Part 2!
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!
What, mom? I’m super cute?
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.
