**This post is coming out the day before we have Sumner’s g-tube surgically removed. It’s been a whirlwind of a year!**
One of the last things that a new parent wants to hear is that their child needs a surgery to install a gastrostomy tube (g-tube). But there we were, well over 100 days into Sumner’s NICU journey and facing that decision. It was one of the hardest decisions for us to make and, because of the adoption, almost entirely out of our hands.
I’ve talked a bit about Sumner’s early challenges in other posts and you can probably tell by how much I talk about Sumner and eating that this is one of the things that we struggle with the most. A little background before I go too far… Sumner was born 13 weeks prematurely. His most significant challenge at birth was breathing and he was placed on an oscillating ventilator before being moved to a regular ventilator. When we met him at 42 days old, he was on a CPAP machine and still quite tachypneic (very fast breathing). His little body worked very hard for every breath and it showed. The oxygen challenges made it so that he was fed through an orogastric tube and later, when his tiny nostrils were big enough for the nasal cannula AND tube, a nasogastric tube. As it was explained to us, both CPAP and high-flow oxygen over two liters create a high risk for aspiration, liquid going into the lungs, because the airway is held open. As a result, we couldn’t start thinking about bottle feeding until he was on one liter or less of oxygen and that didn’t happen until he was 15 weeks old or 2 weeks past his original due date.
By the time we started bottle feeding Sumner, it was the only issue keeping him in the NICU. Everything else had been resolved or could be handled on an out-patient basis. So, there was a lot of pressure for him to either get up to speed or have a g-tube placed to get us out. At first, his feeding challenges were related to his endurance. Learning the suck-swallow-breath pattern was tough and took a lot of energy. He got to a point where he could do about half of his volume before completely falling asleep. The doctors became concerned about him silently aspirating when he plateaued in volume and stopped making any progress. This can be dangerous because it can lead to pneumonia. Most people cough when they have liquid go down the wrong tube, but for a silent aspirator there’s no outward signs of a problem. For him to be discharged, he needed to be able to do 85 percent of his volume and gain weight on an ad lib demand schedule.
So we decided to do a swallow study to see if he was aspirating. I was told that there could be three possible outcomes: (1) he wasn’t aspirating and just needed more time to learn; (2) he was aspirating, but we could thicken his formula and give him more time to learn; or (3) he was aspirating at all thicknesses and would need to have a g-tube placed. It was one of the first times that a g-tube had been mentioned to us and was presented as a worst case scenario.
The swallow study was an interesting experience. Since we had it done on Halloween, everyone was dressed up. Sumner and I were the egg and avocado for avocado toast (dad couldn’t be at the hospital that day as our toast), his nurse was a wolf, his physical therapist was Moana, and the entire radiology team were dressed as trolls. It was a wild party. At the study itself, Sumner was placed in a chair and his PT fed him his bottle with barium in it while the radiologist filmed his swallows. I was able to watch the screen and see when he aspirated. The final outcome was that he aspirated on thin liquids and needed to have his formula thickened to level 2 (aka nectar thick) in order to have a safe swallow. This landed Sumner in outcome #2 where we would thicken his formula and give him more time.
Our NICU prefers to thicken formula to nectar consistency by mixing Enfamil AR to 26 kcal per ounce. Unfortunately, the AR stands for added rice. Sumner ended up on two different formulas. The Enfamil for his oral meals and Similac Total Comfort for tubing (via NG tube at first) whatever volume he didn’t eat since it was thinner and lower calorie. The poor kid really didn’t need to be on such high calorie formula and it was showing. One issue that I haven’t mentioned is Sumner’s issues with gas and stooling. While in the NICU, he was the kind of kid who needed to have bowel movements at least every 12 hours to keep him feeling okay. With the AR formula, his constipation issues got WAY worse and with that his crabbiness. We ended up starting lactulose and prune juice to help keep him regular. But, as you can imagine, the constipation problems made him less and less interested in eating orally. After two weeks of no additional progress, we opted for the g-tube so that we could get him home and keep working on eating at his pace.
The decision to get him a g-tube was not an easy one. On one hand, I wanted Sumner home sooner rather than later. At this point, we were already a month past when we were initially told that he should be ready to be home. I was living at the Ronald McDonald House and Justin was at home working and dealing with our dog. The long distance and constant pressure to always be there with little relief was wearing on me. All I wanted was for our little boy to be well and to come home. I also knew that it would be easier to work on his bottle feeding skills at home since we wouldn’t have the constant interruptions of staff and the attendant surveillance with it and we could figure out what would work best for Sumner.
On the other hand, I didn’t want to put him through another procedure if there was a chance that we didn’t have to. The night after his first eye procedure was rough. He ended up needing a staff assist, one step below a code call, because he spent the entire night desaturating and having a difficult time recovering. It was really scary.
I was also finding that our doctors were giving me mixed signals. Our NICU assigns babies to one of three care teams that are made up of four doctors and two nurse practitioners. One of the doctors and NP’s would be on shift for the entirety of each week. As a long-term family, we got to know each doctor’s approach and style. That being said, we also got to see how they differed. One doctor was on the “give Sumner more time plan,” another was on the “we’re not there yet, but could be and you let me know when you’ve had enough,” and the third was on the “why the heck are you guys still here?!” plan.
I finally asked the last doctor to sit down with me and give it to me straight. We looked over Sumner’s eating data and discussed how he wasn’t making any additional progress. We talked about the therapeutic value of keeping him in the hospital versus taking him home. We talked about the risks of surgery and my fears based on his past history. We talked about what living with a g-tube could mean for his longterm health. In short, I finally got someone to talk to me like an educated person. With it all out there, I decided to go forward with the surgery.
It was a relief to have made the decision. From there, things went quickly. The surgeon was in to talk to me the next day and agreed to coordinate with Sumner’s eye doctor since we opted to combine the procedures. (Lasering his eyes was on our radar for the future, but with him already going under it made sense to move things up.)
We had the surgery done on November 19th and were discharged on November 25th. Sumner did really well with the surgery. He came back up to his room still intubated, but that was to be expected with his lung history. We felt comfortable enough to get some dinner since we knew that it would be a while before he was ready for extubation. Evidently, Sumner had different plans and decided he was done with the breathing tube earlier than expected. His nurses were in his room right as we were getting back from dinner about an hour later.
Over the course of the night we made sure to keep up on his pain medications. He was back to eating that night. Since he was so tired, we didn’t bother with bottle feeding until the next day. Plus, it allowed us to gradually increase his meals to make sure he was tolerating the g-tube.
A couple of days later, our representative from the durable medical equipment (DME) provider came by to set us up with our initial supplies including the feeding pump, bags, connectors, and formula. It was a relief to have all of these things on hand before leaving the hospital. A few days after getting home, the rest of that months supplies were delivered. I was impressed with how smooth the transition was given the possibilities for mistakes.
Up next in our journey, working towards oral feeding with a bottle.