Here is the second part of our CDH journey!
So Kennedy was taken to Lutheran Hospital a few hours after she was born. She was heavily sedated. They couldn’t put her on ECMO because she was too small and she didn’t really need it. She was breathing pretty well, but they put her on a ventilator to make it easier on her little body. The NICU at Lutheran is great because each baby gets a private room. We had a nice sized room with a couch, recliner, and shelves to put cards and books on for her. She wasn’t any stimulation those first couple days. The lights were always off and you weren’t allowed to touch her. I don’t know a lot about what went on the first 4 days because I was at a different hospital across town. Columbia and I were discharged the morning of her first surgery. We went straight from one hospital to the other. I got to see Kennedy just before they took her away for surgery. It was really, really hard to see her like that. No parents wants to see their newborn hooked up to a bunch of machines with different tubes and wires connected to them.
One thing that made the upcoming weeks easier was being able to stay at the Hope House. Hope House is a hospitality house at Lutheran Hospital. We were right on the hospital campus and everyone there was so nice. We didn’t get to leave the hospital and go home like a big happy family. We left the hospital and went to the Hope House,. That was our new home. Columbia spent the first 6 weeks of her life there.
They think Kennedy’s CDH happened later in the pregnancy so it wasn’t very severe. I’ve heard that it happens early in the pregnancy too, so I don’t know what it really true. Her left lung was developed almost completely which was good for being a CDH baby and born 5 weeks early. They were able to stitch the hole closed and did not need to use the Gortex patch. They also removed her appendix and fixed her mal-rotation. Her little stomach was a mess. After her surgery she had the vent for about another week and lots of pain meds. She had a lot of problems with getting her to stomach to start working and taking food. She always had a lot of mucus in her stomach and a lot of the food she was given ended up being sucked back out.
About 3 weeks after her hernia repair she was still having a lot of problems with eating. She wasn’t keeping anything down and she wasn’t having bowl movements. They did x-rays, ultrasounds, and upper GIs. Finally they decided to do an endoscopy. During that they saw that part of her bowl was kinked off so since she was already sedated they went ahead and did surgery to un-kink it. I had taken Columbia to a doctors appointment wasn’t even around when they did everything. We thought this was the answer to her problems and that things would get better, but we were wrong!
Kennedy still continued to have so many problems with eating. Everything they gave her she would throw back up. Most of the time it was projectile. We had learned to cover ourselves and the floor in front of us when she would eat. I kept trying to talk to the doctors about it and try to get them to do something about it but they never listened to me. They said it was normal and that she would out grow it. They put her on reflux meds and sent us home. It was April 1st and we had been there 6 weeks.
It was very stressful coming home. I wanted to be home but it scared me to be home. I had gotten so used to the doctors and nurses being around to help and it was scary to do everything on our own. But our time home was short lived. 1 1/2 weeks later she was back in the NICU. All the throwing up was irritating her esophagus and had caused it to bleed. She was throwing up blood! They admitted her to the NICU again, changed around her meds and sent us home about 4 days later.
In addition to the throwing up, she would have these choking type episodes. It’s hard to explain what they looked like so I will do my best to explain them. It looked like cross between choking and a seizure. She would act like she couldn’t breathe and her face would go white. Her arms and legs would stiffen up and after it was over she would be really lethargic. This would happen a couple times a day. In fact the first time it happened my mother-in-law was watching the girls so we could go to the WIC office. Kennedy had one of these episodes and my MIL thought she was having a seizure and called 911. Now, my MIL is a nurse so she has a good grasp and on medical stuff. We were sitting in the WIC office and the woman had an EMS scanner turned on and we heard our address go across it. Now if that isn’t enough to scare the crap out of you then I don’t know what is. We left there FAST and beat the EMS to our house. They took her to the ER to be checked out, but it was just one of those episodes. I asked our family doctor, surgeon, and pediatrician about these episodes and they all said it was normal for the most part. The pediatrician did take a chest x-ray though and confirmed that when these attacks happened she was aspirating stomach contents. They all said she was kinda throwing up but then it went down the wrong pipe.
In May I took her to the pediatrician because she wasn’t eating very well again. They weighed her and she hadn’t gained any weight the past week. (We were there almost weekly). She also wouldn’t keep her reflux medicine down. She kept throwing it up everytime I gave it to her, which then made her reflux worse because she couldn’t even keep the meds down. She was 3 months old and about 6lbs. She was all skin and bones and couldn’t afford to not gain weight. They put a NJ tube in her nose so she could eat without throwing it up and they also had her doing breathing treatments because she constantly sounded congested. We met with a pulmonologist who said that her problems were pulmonary related that she needed a Nissen. So we had a surgery consult with her surgeon who said the same thing. They wanted to discharge her though and send her home to gain more weight. We weren’t happy with how things had been handled and wanted a second opinion on Kennedy. I talked with some people down at Nationwide Children’s Hospital in Columbus and a surgeon there said she would take Kennedy on as a patient. So we told Lutheran we wanted her transferred. One week after she was admitted we were on our way to Columbus!
Our time in Columbus will be the next chapter in our saga!
Coming home from the NICU
Kennedy on Easter. She was soo frail
The first picture I got of her smiling.
Sister love! Columbia missed her sister