Our CDH Journey

The First 3 Months

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


After much prompting from various friends, I decided to start a blog about our journey with CDH. Since some people reading this blog don’t know about our story I figured we should start at the beginning!

On July 7th 2010 I found out I was pregnant. We were going camping that weekend and I thought I might be late. Camping while menstruating is never fun so I thought I would take a pregnancy test just in case. Well, boy was I shocked when it was positive! I called my husband at work and told him the news! We were very shocked to say the least! We weren’t exactly trying to get pregnant, we figured if it was meant to be then it would be.  In the past we always said we would wait until I was further along before telling people about being pregnant, but it’s really hard to keep that kind of stuff a secret! So we called our parents who were very excited! All the months of pestering us about having kids finally worked I guess!

Later in the month after some blood tests it was discovered that my progesterone levels were low. The doctor ordered an ultrasound to make sure things were OK. I was about 6 weeks along at the time. They did the ultrasound and found quite a surprise! Instead of just one baby, there was two! TWINS! My husband nearly fell off the chair when they told us this! From the day I found out I was pregnant I always had a hunch that it was twins.  My Dad is a twin and my Grandmother is a twin also. Of the 3 generations 2 of them were twins and now my twins were making generation 3 of twins! (I feel left out that I don’t have a twin!)

My pregnancy was pretty normal for the most part. Not a lot of morning sickness, but I had a lot of sinus problems. And of course the normal reflux and horrible indigestion from blowing up like a blimp!  In January when I was about 7 months along they noticed an abnormality on the ultrasound and I was referred to a perinatal specialist. We met with that doctor every week for about 1 1/2 months. He said that Kennedy’s placenta wasn’t functioning at 100% and he wanted to keep an eye on it. Finally in mid Februrary he decided that it was time to take them. Kennedy’s placenta wasn’t functioning very well anymore and he decided she would do better out! We scheduled a c-section for the following Wednesday, February 17th.  That weekend the girls were very, very active. My stomach was doing summersaults constantly. They had never moved that much before! On Sunday, February 14th, the girls decided they were done cooking and wanted out! I started having contractions so I called the hospital. They talked to our doctor and told us to come on in and they were going to do the c-section that day. At 2:52pm Columbia entered the world weighing 4 lbs 15 oz and was 17 3/4 inches long. Kennedy followed shortly behind at 2:53pm weighing 3 lbs 12 oz and was 17 1/4 inches long.  We got to hold them both for a little bit in recovery then they were taken back to the nursery. After I returned to my room one of the NICU doctors came in to speak with us. They told us that Kennedy was born with a Congenital Diaphragmatic Hernia. He briefly explained to us what it was and told us that she was being transferred to a hospital on the other side of town shortly. We really had no idea was CDH was or how serious it was. My Mother-in-law is a nurse and she was the only one I think that knew anything about it. I got to see Kennedy that night for about 5 minutes before they transported her. They brought her in to my room with the big transporting incubator. It was so sad and pitiful. They had her heavily sedated so she couldn’t feel the pain.  And so began our CDH journey.

First picture of the girls together


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