February 22, 2017
Our appointment was scheduled for 8 am on Wednesday so Tuesday after work we left the kids with Mike's mom and we headed to Kansas City. Thankfully my friend Brandi just moved back not long ago and lives about 30 minutes from the hospital and allowed us to stay the night at her place! We had a nice evening catching up and then in the morning we headed off to our appointments. The first test was an echo-cardiogram to look at the baby's heart function. Due to the stomach being pushed up into the diaphragm, it can put extra pressure on the baby's heart. After the echo we met with a cardiologist who went over what they saw. Our baby's heart was looking good! They didn't see any major areas of concern and determined that unless something changes between now and birth our baby will not need another echo until after birth! This was great news, and we are thankful for one less thing to complicate things for our baby! Next up was an MRI. They needed an MRI to get a better picture of the baby and all that is moved and going on inside. I was sent downstairs to have this. I have never had an MRI before and would be quite happy to never have another. We met with a nurse who explained that it would likely take an hour and that I would probably be hot in there..being pregnant and added heat is not a lovely combination! I got changed into scrub like clothes and had a metal detector scan before entering the room. I was told I would need to lay perfectly still for the entire thing. I can barely lay in one position when I am not pregnant and I wasn't sure how well I could manage this task. I got up onto the table and was told to get comfortable. I was given pillows to support my legs and belly. I started to get a little anxious due to being slightly claustrophobic and I was already getting hot(the pillows helped me get comfortable but they didn't help the heat situation). They gave me special goggles that would play a movie and it was go time. They warned me the table was about to move and away we went. As I was slid in, I could feel the machine closing in around me and it pressed the pads into my back and side. After about 1-2 minutes I was feeling nauseous, over-heated, and was wondering if I was going to make it. I was pretty sure if they could see my heart rate it was through the roof at that moment. Then I was warned that the machine would make loud noises and they were supposed to sound that way and the movie started. I was very thankful for the movie, it really helped distract me from thinking about being confined in the machine. Every so often I was instructed to hold my breath, this was difficult in the machine but I managed. I started to get restless, my hips and legs were hurting, the baby was pretending my bladder was a trampoline(all that movement made the MRI last longer too :( ) and I could feel sweat dripping off of me. Finally and hour later they said they were done and I was released from the machine. They immediately brought me ice water and a towel and I looked down to see my entire front covered in sweat...not my most glamorous moment :) I was taken back to change and find Mike. We now had a little break in between tests to go find something to eat. I was shaking and still a little woozy from the MRI and after eating felt a lot better. Last stop for the day was another ultrasound(something we will get every time we go for an appointment). I was feeling pretty excited since we were now going to find out if we had a baby boy or baby girl growing! Fun facts: J wants a girl and G wants a boy! Mike's gut said girl. My gut said girl early on and then I had a dream it was a boy and didn't feel strongly either way. Brandi's dog barked once for a boy. Most people think I am carrying a girl. We started the ultrasound and the tech reviewed our chart that had said we didn't know gender by choice and we told her we had changed our minds and would like to know. She wasted no time and scanned right on down to the show us. We didn't need her to tell us, we could clearly see that it's a boy! It was an exciting thing to find out after a very rough couple of weeks! We laughed at how Brandi's dog was correct and how G would be so excited. I wondered if J would cry that she wasn't getting a sister! They finished the scan and gave us some more 3D pictures of baby boy! The doctor came in and they didn't see any other surprises and we were told they would call with the MRI results. Our appointments were over. We headed home and on the way decided on a name and how we were going to tell the kids about their baby brother. We decided on stopping to get silly string and letting them spray the cans to find out. When we got home we took the kids out to the back yard and explained if they saw pink it was a girl and if they saw blue it was a boy! Mike's mom video taped while I took pictures! Gunner was very excited and Jaida didn't cry! We told them his name is Kyler Joseph! Another fun fact: Kyler means "little warrior" and he is our little warrior!
6 Comments
Our journey started when we found out we were expecting baby number 3 into our family. Sister and Brother were excited and have only gotten more excited as time has gone by! Little did we know our plans for the baby weren't going to go as we had hoped.
On February 1, 2017 we went in for a follow up sonogram. We thought we were just going in because at our 20 week sonogram the baby was pretty uncooperative in how it was positioned and we assumed they weren't able to get the shots they needed to see. After the ultrasound the doctor came in a drop a bombshell...they could see the baby's stomach up by the heart and that is not where it should be. I was told it is called a Congenital Diaphragmatic Hernia and that we would be referred to a high risk specialist in Kansas City for the remainder of the pregnancy. The doctor also informed me that I would now have to relocate to Kansas City toward the end of the pregnancy and that is where I would deliver. This news hit very hard and was the last thing I was expecting. After gaining some composure, the doctor let me out the side entrance and I got to my car to call Mike. Since we hadn't thought anything was wrong I had gone to the appointment by myself. I met up with Mike and shared what I was told. We now had to wait on a call from Kansas City to get set up with them and figure out how serious CDH was, what was the plan, etc. Thankfully we got the call by the end of the day and we were set up to get into Children's Mercy that Monday. I had chosen to stay away from Dr. Google until we could talk to the specialists. Finally Monday February 6th rolled around and we headed to Kansas City for our appointment. I was anxious, scared, hopeful, and a whole slew of emotions on our way there. First step was genetic counseling. We gave a medical history and opted for noninvasive prenatal screening (NIPS) to check for any possible chromosomal defects. Then we met to go over my medical history and determine if I would be able to deliver at Children's Mercy. I was cleared to deliver there barring any future changes that could make me(not just the baby) high risk and we were told of the back up plan of being at Truman right next door. Lastly we were headed for the ultrasound. We got started and the ultrasound tech asked if we knew gender. I told her we didn't want to know and that really Mike did but I wanted it to be a surprise! She was super nice and Mike tried his best to get her to slip up but she didn't! During the ultrasound we got to see 3D pictures of the baby, we had never had 3D done with our other two kids so that was really neat to see! After an hour long ultrasound she was done and Dr. Mundy came in to talk to us about what they saw. We were hit with yet another bombshell. Our baby only has a 50% chance of survival. The baby's condition was confirmed and we were told that the baby's lungs were measuring at .59. It was then explained that there was a surgery that could be done in the womb and that our baby would qualify due to the lower lung size. Dr. Mundy explained that babies whose lungs that measure 1 or greater don't seem to benefit from the surgery much. Initially I was glad to hear there was something that could be done and then we were told the details. In order to have this surgery we would need to go to either Philadelphia or California to have it done. Theses were the two places Dr. Mundy was recommending although he did say there may be other health centers in the country that do the procedure. We also were informed that the surgery would need to take place within the next two to four weeks when I was at 24-28 weeks. After asking some questions we also found out that if we decided to have the surgery I would have to stay there until after birth and the baby was released from the hospital NICU. The surgery would put me at a higher risk for preterm labor and other complications due to doing surgery in the womb. I would also be looking at being there for up to 6 months. It was discussed that having the surgery would only increase our baby's chance of survival 20%. We were also informed of our other option which was to continue to be seen at Children's Mercy and the team there would do everything they could after the baby is born. We were told we had a few days to decide so that if we chose the surgery they could get us referred to the other hospitals and get things in line to have the surgery during the appropriate gestational age. We left the hospital and decided to find something to eat(and celebrate Mike's birthday). We drove out to Legends and stopped for dinner. We spent dinner time and the drive home contemplating our choices. We were stuck in a sucks and sucks even more type of choice. We decided we weren't going to tell the kids anything so we put on as normal as face as possible when we got home. We decided to sleep on it and see how we were feeling and what we were thinking the next day. The next day we felt like we had made our decision but we waited until the afternoon to call our case manager in Kansas City to let them know. After weighing the options we felt that we needed to stay in Kansas City for care. Some of the factors that we considered included me leaving our entire family and support system for up to 9 months to have the surgery, the small increase of chance the surgery provided plus the added possible complications to me and the baby, as well as the financial aspects of leaving my work and then being without pay for up to 9 months. We also both really just felt that God wanted us in Kansas City and we felt calm about leaving it in His hands. Mike made the call to Children's Mercy and let them know our decision. We were told they would get us scheduled to go back in a couple weeks for more testing. That date was set up for February 22 with another follow up a couple weeks after that to meet with the team of doctors, surgeons, and anyone else who would be taking care of myself or baby. In the meantime while we waiting for the next appointment I decided that I wanted to find out baby's gender so that we could name it. I wanted a name so that family and friends could pray more specifically for our child. I wanted a name because if the worst case happens and our baby doesn't survive after delivery, I do not want to be trying to name our child then. I let Mike know that I was ready to find out. We also decided to let our kids know that the baby was sick. We didn't go into much detail and just let them know that the baby in mommy's tummy is sick and that mommy will have to go to Kansas City to see special doctors who are going to try to make the baby better. We told them that next time we went, we would find out if it was a boy or a girl. They were pretty excited to get to find out what the baby was and they handled the news well for all they were told. |
Our journey with a child diagnosed with a Congenital Diaphragmatic Hernia (CDH)
Hospital Visiting Hours and Rules
9:00am-7:00pm 8:00pm-9:00pm Archives
May 2020
Categories |