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.
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.
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.
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.
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.
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.
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.
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.
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!
Isabella was born without any birthmarks, but, after a few weeks we noticed a small, flat, red spot on her head. The NICU team assumed it was agitation from her CPAP hat so we switched her breathing assistance to give it a break from rubbing. After looking closely, her primary nurse and I determined it didn’t look like skin breakdown but more of a permanent spot. She threw out the thought, “oh she’s probably got a hemangioma!” I, of course was terrified looking up images (after learning to say/spell it).
My worst assumption ended up coming to fruition, Bella has a large hemangioma that looks every bit as scary as some of the ones I saw with my search. Simply put, it’s harmless, is considered a vascular birthmark, should go away as she grows, and is a collection of blood vessels. We did an MRI to rule out any issues and it’s completely superficial and cosmetic. Long story short, we choose not to treat it a few months ago. We got a second option from a pediatric dermatologist and heard from many neonatologists who treated Bella. We felt that was the right decision and that we would embrace it until things needed addressed. Until…
Why is her birthmark a problem?
Sadly, after being readmitted to the NICU we noticed 3 more teeny red dots/beginning of hemangiomas on her tummy/chest. They are elevating but don’t look scary yet. We were advised to follow up with dermatology to reconsider treatment. When there are 5, it’s recommended to begin treatment because there’s higher risk of internal ones. Internal ones can cause issues with major organs. The large one on her head is also growing rapidly. So, we were waiting for August 9th for her appointment when we noticed the birthmark changing color. I knew these things could ulcerate (skin breakdown), but hadn’t seen signs before. I’m so glad I trusted my intuition. I immediately contacted our dermatologist who confirmed with images it is beginning to ulcerate. 🙁 We began treating it with antibiotic cream and see him on Monday. (He offered the next day but we felt Bella needed to rest after going through so much). He said ulceration could be extremely painful. I’ve seen what they look like when they break down and it’s very painful looking.
What’s next? Isn’t it an easy fix?
We will begin treatment with a drug called propranolol. This medication inhibits the growth of blood vessels and constricts current ones. This is hard for us as Bella is the size of a newborn (7lbs 12 ounces) and the thought of messing with her blood pressure/cardiovascular system terrifies us. That being said, with monitoring her blood pressure and vitals this treatment is safe and effective. It’s very commonly used. We don’t want the ulceration to get worse and we certainly don’t want to worry about internal hemangiomas!
I, personally would also like to prevent the others from getting to the size of her larger one. Since they’re on her chest/stomach they could interfere with her tummy time or gtube. After talking to the doctor, we decided to do a liver ultrasound just to confirm there aren’t any hemangiomas there. So, on Monday we’ll be trekking to Akron Children’s for her appointment and ultrasound.
1.) This birthmark doesn’t ulcerate any further and that with treatment we can avoid pain and discomfort.
2.) Bella tolerates the medication.
3.) That we would be able to handle the magnitude of treating such a little one with such a serious prescription. That we would be extra careful with doses and track it well.
4.) Also, pray against any internal hemangiomas. We have no reason to believe she has any, but it is a possibility.
Today was difficult. Since being home from the NICU we haven’t been so scared that Isabella would need to be sent back to Akron Children’s Hospital.
The First Plan To Treat Reflux
Lately she’s been spitting a lot after almost every feed and cries out in pain. We’ve known she has reflux, but were advised against treating it since she was doing OK and not spitting much…until more recently. After last week meeting with Speech Therapy and Nutrition, they noted she was hoarse and her esophagus could be getting burned so we should begin treating it. We got in the same day with our Pediatrician and began Zantac. We also ordered a pump for her gtube feeds, hoping that would help. Since then things have gotten worse. The Zantac made her struggle to go number two and seemed to increase the spitting. We stopped it and made an appointment for Friday.
Where We’re At Today
We didn’t know it would get to the point where she’s spitting up almost her entire feed and crying/screaming out in pain while being fed through her tube. She shows all the classic signs of reflux. The formula comes up through her nose, she burps it up, and she is coughing a lot. This afternoon I couldn’t bring myself to continue her feed because she was in agony. I’d stop it and restart it. She has to eat! She’s been labeled as Failure to Thrive once before so this is very scary for us. I called right away and got an appointment this afternoon. Sadly, she had only gained about one ounce since July 11th (6 days ago) and she’s supposed to be gaining an ounce per day. We strategized and decided to try Prilosec and Neosure Alimentum, a specific formula that may help. (In the NICU we tried this formula for a few days but saw no progress). Since we’ve been home tonight she’s only had a slight spit, slept through one feed with minimal crying, and cried through the other feed. It’s improvement. I’ll take it.
Why Is She Getting Worse?
We aren’t 100% sure why her reflux has taken such a dramatic turn but we have a few ideas. 1.) When she had her gtube surgery her stomach was moved. The Neonatologist had warned us this could cause reflux since the position of the stomach is different. 2.) Babies can “grow” into reflux. I’m not sure why, but it’s something that you see between 3-5 months we were told.
Why Is This Such A Scary Thing?
Isabella was a micropreemie and needs to grow. She is less than 1% in weight than the rest of those her age. Refusing to eat caused her to be readmitted into the NICU for another month. We later learned she silently aspirates (liquid goes into her lungs) when she eats. This has caused her to be extremely averted to bottles and most things orally. With her spitting up, we are concerned she could be aspirating that liquid. We have no way of knowing if it’s going into her lungs. Without keeping her formula down she could also lose weight, which is super scary for a baby already in the less than 1% for weight. This could lead her to be readmitted to the hospital.
Please pray that she stops spitting and begins tolerating feeds and isn’t in pain.
When It Rains It Pours
On top of the reflux, which was the most critical issue we were facing today, Isabella’s hemangioma (birthmark on her scalp) began to show signs of ulceration (skin breakdown). I had noticed a few dark spots and after some research learned that the large blood vessel filled mark could ulcerate and breakdown. It can also get infected. I sent off some images to our pediatric dermatologist and he called back, confirming it was beginning to ulcerate. We were given the option of taking her to Akron tomorrow but we felt it was best to wait a few days since she’d been through so much and we are beginning a new formula and medicine today.
He said that was OK and ordered a topical antibiotic to apply. We aren’t to use our fingers but a Qtip. Well, I kiss her all over her head and stoke her head and most certainly touch it, so I’ll need to be more careful and use more sanitizer.
We are also going to be treating the birthmark with medicine to make it shrink. 2 months ago we met with him and decided against treating it since it seemed as if it would go down and she only had one. It was only cosmetic and that was confirmed with an MRI. Now, she has 3 more and there’s concern for internal ones. So, for our next appointment we will begin a blood pressure medication to shrink it and the others. She will also have a liver ultrasound to rule out any internal ones.
My heart is super sad, but thankful we have access to medical professionals. Our dads both came over and brought goodies. Doug brought homemade pie, veggies from his garden, and chocolate zucchini bread. My dad ordered us Papa Johns, enough for tonight and tomorrow. They held Bella while I tried to get a grip on everything. Tomorrow we meet with Help Me Grow at home for her assessment for physical therapy and pediatric development. I’m praying it’s a better day and she’s not in pain.
Thank you all for following our journey and loving us well. Please pray tonight goes well.