Kinsley has been tube free for two full weeks.
This is a big deal.
Sometimes I look at this little girl and I think about how far she’s come and it blows my mind. It’s crazy to think that just a few months ago we were in the NICU waiting to hear the results of her TEF repair surgery, and whether or not they were even able to connect her esophagus together, and just since then she has spent 6 more weeks at the hospital, had two esophageal dilations, went through 15 weeks of feeding therapy, and now shes been eating solely from her bottle for two weeks straight.
To some people none of this sounds like a big deal because they don’t have an understanding of everything that we’ve had to do from the start to get to where we are now. But to those who have followed along closely and have been updated along the way, they know that Kinsley feeding with a bottle is a HUGE accomplishment.
For the sake of documentation, I want to let this post serve as a record of Kinsley’s biggest achievement thus far.
Kinsley was born on the 25th of June at 7:37pm and she was on her way to the Helen DeVos Children’s Hospital before the night was over because of her congenital defect TEF. She left Petoskey around 11:30pm and arrived at DeVos the following morning between 5:30 and 7:00am. After her arrival, specialists, neonatologists and surgeons met, confirming that she would have to have corrective surgery to properly disconnect her esophagus from her breathing tube and connect it to itself.
On the 27th, at a whopping 36 hours old, she had that surgery. I can remember waiting in the room to find out if they would actually be able to connect her esophagus to itself. Sometimes if the disconnect is too large, the surgery is put off until the baby has grown some and the esophagus is at a length that minimal stretching needs to be done to reconnect it. At the time this was my worst fear.
The surgeon came into the room and informed us that everything went well, though. Those fears were exonerated. He told us we could see her once they moved her to the recovery room, and he said that she would not be on a ventilator, as she was his first baby ever to come out of the surgery and not need one.
At that time I knew for a fact that we had ourselves a true fighter.
But I didn’t know to what extent she would have to fight.
Leaving the NICU 45 days later, I was well prepared for esophageal issues. I wasn’t well prepared for respiratory issues. I knew she would have to have dilation procedures to stretch the scar tissue that formed in her esophagus. I didn’t know that she would struggle every day to breathe, or what kind of impact that would have on her feeding.
Feeding therapy was a struggle all on it’s own. It took two weeks for the therapy place to fit her into the schedule. Even then, we met two times a week with a therapist and at first, for over ten weeks we just worked on oral stimulation because it was clear that Kinsley’s breathing was too unstable to handle liquid being added to her mouth. Her tests showed that she was aspirating, and liquid was going down the wrong tube, even though she showed no sign of it except on the esophogram.
To add, her suck-swallow-breathe patter was nonexistent. She had no control over feeding skills. It simply wasn’t there for her. This was hard for me to grasp. A skill nearly all babies are born with and have inherently, my child cannot perform. But this journey taught me patience and understanding like I have never known, and I eventually was able to accept that it would be harder for Kinsley to eat, but that doesn’t mean that she never will.
So we stuck with it. I dragged myself out of bed, half zombie, half mom, and I took my tiny baby to therapy twice a week, even when it felt pointless. Even when it felt like everything we were doing at therapy I could do at home. Even when it felt like the therapist could have been doing more. Even when it felt like I was over extending myself to get through so that important tests and appointments could be scheduled. We fought together, and I’m proud of that.
When a swallow study was finally ordered, we drove Kinsley to Grand Rapids and in a couple weeks the results were released. She had control over her swallowing, it was perfectly timed. She was no longer aspirating, and everything was going where it needed to go. She still needed to work on her rhythm, but we had the okay to start giving her a bottle.
I waited even after that because I wanted to be sure. I wanted all of the doctors to be on the same page. I wanted her ENT, Surgeon, therapist, and swallow study technician to all be looking at the same results and coming together with a cohesive plan to get her moving in the right direction and ultimately further her development rather than view only one piece of the puzzle and put her back.
It was the right thing to do.
Her therapist ordered a special bottle for her, one with notches on it that could control the flow, and make it even slower than a premie nipple, that way she could handle the liquid at whatever speed she was at without choking.
The struggle did not end with all this good news.
On December 14th, around 11:50 pm Kinsley pulled her tube out. She was doing well with oral feeds so I decided not to put it back in until I needed to. From that day forward, she went 5 days straight without any problems at all. Until one evening when she started to have an episode where she was breathing heavily, face turning red, and not taking the milk without making a mess all over herself.
We weren’t sure if she was just tired, or we were holding her in a way that wasn’t conducive to sucking and breathing, but we kept trying. She barely made it through that feeding and at the next she started to choke and she stopped breathing.
I held her in the rocking chair as her lips turned purple and her chest heaved as she gasped for air, a fish out of water.
I remembered the nurses direction when we were in the nicu, so I straightened her body out, held her chin up so her neck was straight and her airway open and I patted her back until she cleared her airway and started to cry.
It was a terrifying moment for all of us.
The next day we had feeding therapy and I told the therapist what happened. She suggested we hold Kinsley a different way while feeding her, because side lying is much easier for babies to swallow and breathe. She also had me schedule an appointment with the pediatrician to make sure her lungs were clear.
The next day we arrived at the pediatrician office and after her examination we found that Kinsley’s lungs were clear. Even in her choking episode everything managed to go down the correct tubes. Since then we have been feeding Kinsley with her body straight and head to the side and she has been doing great.
A few days later we accidentally broke the tabs off her special bottle. Since that happened we’ve been using the bottle and premie nipple we started her on in the NICU and she has yet to have a single episode.
She’s been two weeks tube free now.
As it turns out, the struggle was not so large that it could not be overcome. Kinsley comes from a family of fighters, so I should have expected it would only be a matter of time before she was able to break through.
However, it’s not completely over yet. Kinsley will still continue therapy twice a week until she’s able to use a regular slow flow nipple with the bottle. Then she will have checkups regularly from there forward.
Despite the long road we took to get here, we are so happy to have finally reached this destination. It’s the best Christmas present we could have asked for.
Happy Holidays, friends.