On June 15th, 2020, we found out Kipp's heart had something "wrong" with it. We were told that a Maternal Fetal Medicine Doctor would be contacting us. Two days later, we had our first appointment, and within 20 seconds of our ultrasound we were told "your baby is going to need surgery".
After what felt like forever, the Maternal Fetal Medicine doctor came in and said "you were referred here for a VSD (hole in the heart) but there's more... it's called 'Tetralogy of Fallot' and you will need to start seeing a cardiologist now." He also mentioned that it was possible baby Kipp may have Down's or Digeorge syndrome.
So, we went down to cardiology and had an echo. We were in total shock and shed many tears. Thankfully, our Pediatric Cardiologist was able to explain what was going on in such a caring way. He told us not to let this "ruin our pregnancy" and that we were still going to have a beautiful baby. He told us that our baby would have surgery around 4-6 mo. He also told us that we could terminate the pregnancy (this was never an option for us. We knew we'd love our baby no matter what... but it was still really hard to hear someone say it to us.)
The next day, June 18, our Pediatric Cardiologist called to tell us there was more... Kipp has a Right Aortic Arch, which means he will have to have surgery at only 2 mo. old instead of 4-6. He also said this is another indication of Digeorge Syndrome, so we would need to do genetic testing.
So the next day (June 19th) it was back to Fargo for more testing. One loonngg week later we got the test results back... NORMAL!! The first good news in awhile.
After the initial tests and appointments, we tried to focus on enjoying the rest of our summer. There were a lot of breakdowns, a lot of asking God "why?" but slowly, we began to accept that our baby would need open heart surgery.
On August 5th, we left for Grand Marais, MN, to surprise Jacee (my sister) at an engagement party planned by her fiance, Elijah. We decided not to pack the pregnancy bag because Kipp was only 36 weeks and he was breech at our last appointment, so there was very little chance of him coming early.
We (Levi, Kash, and Krosbi) travelled with my Mom and Dad, and we decided to stop halfway in Bemidji, MN. We spent the night in a hotel right on the water. It was beautiful.
On our way down to supper, Krosbi (2 yrs old), got her arm caught in the hotel elevator! Thank God she is so tiny; she was totally fine! It was extremely stressful though, and caused my water to break! I didn't realize it at the time, because it was a slow leak rather than a gush.
The next day (August 6th) I felt "off". I was having more Braxton Hicks contractions and felt like I couldn't control my bladder. We had an early lunch, and headed to Grand Marais.
After what felt like 50 hours (haha) we made it to Grand Marais, MN! We met up with Jadi and AJ at our hotel and spent the evening on the beach. It was great!
August 7th, I woke up with more fluid, and started to worry that my water had actually broke. I went for a walk with my fam to grab coffee and we got back to the hotel I realized there was more fluid and a little blood.
We decided to play it safe and headed to the ER in Grand Marais; it was a small hospital but we had a wonderful doctor who confirmed my water HAD indeed broke! Now the concern was infection, having a premie with a heart condition, and where I could go to deliver.
The doctor called to St. Mary's in Duluth (2 hrs away) and they said they'd take me. I rode in an ambulance and Levi followed.
We arrived at St. Mary's late afternoon. They brought me up to the birthing center where they already had a room prepared for me. I was so scared for what was to come, but then our amazing nurse Mikah walked in; he calmed me down as I waited for Levi.
Mikah explained that a lot of specialists were going to come in and together we would come up with a plan, which ended up being: a C-Section, because Kipp was still breech. NICU would also be in the delivery room, and transportation would be ready for Kipp just in case he needed emergency surgery (in Minneapolis).
The delivery went as well as possible; I was really sad/scared about having a C-Section but it ended up being what was best for Kipp! Our doctors were on board with delayed cord clamping and tried to keep him with me.
He came out screaming at 7:01 pm and NICU tested his oxygen for several minutes. He had good pink color and seemed to be doing really well. Once NICU confirmed he was stable, they let me hold him skin to skin while I was being stitched up! I cannot describe how amazing this felt; we didn't think it would be possible.
Once I was stitched up, they took us to a Post-Op room. Kipp nursed and Levi and I started to wrap our heads around what just happened!
The next two days were a blur. Kipp had trouble stabilizing his blood sugar. We were told that we would need to supplement with donated breast milk until I could pump enough. We are SO THANKFUL for the donated breast milk!
We spent all of our time nursing, pumping, and supplementing with a syringe, and Kipp's blood sugar was checked every 2 hours. He had one very low reading, and we were told that if it didn't go back up on the next test, he would have to go to NICU. Being the fighter he is, his next test came back normal! He got to stay with us! He also passed his newborn screenings and the carseat test.
On August 10th we were released, which was perfect as this is when my family was traveling back home from Grand Marais, so we could go together. It was so nice to be reunited with the kids! The trip home went well.
While it is nice to be back home, the journey is FAR from over...
Kipp will have weekly Echos in Fargo leading up to his surgery, which will be at the U of M.
His heart will be monitored closely for this first 2 months and his team of surgeons will decide when it's time. When the time comes, we will be at U of M for about 10 days for surgery.
The surgery will be an open heart surgery to patch his large VSD and to shave off the extra tissue around his pulmonary valve.
After that, it is weekly follow up Echos in Fargo.
There have already been A LOT of tests, and there are more to come: echos, CT scans, along with his very specialized surgery and hospital stays.
We pray that his case will remain "mild" and that he will only need 1 open heart surgery.
Until then its a strict feeding schedule to help our little warrior gain weight.
We are so appreciative of your help and support in any form!
Thank you!
Justene, Levi, Kash, Krosbi, and Kipp Kouba
After what felt like forever, the Maternal Fetal Medicine doctor came in and said "you were referred here for a VSD (hole in the heart) but there's more... it's called 'Tetralogy of Fallot' and you will need to start seeing a cardiologist now." He also mentioned that it was possible baby Kipp may have Down's or Digeorge syndrome.
So, we went down to cardiology and had an echo. We were in total shock and shed many tears. Thankfully, our Pediatric Cardiologist was able to explain what was going on in such a caring way. He told us not to let this "ruin our pregnancy" and that we were still going to have a beautiful baby. He told us that our baby would have surgery around 4-6 mo. He also told us that we could terminate the pregnancy (this was never an option for us. We knew we'd love our baby no matter what... but it was still really hard to hear someone say it to us.)
The next day, June 18, our Pediatric Cardiologist called to tell us there was more... Kipp has a Right Aortic Arch, which means he will have to have surgery at only 2 mo. old instead of 4-6. He also said this is another indication of Digeorge Syndrome, so we would need to do genetic testing.
So the next day (June 19th) it was back to Fargo for more testing. One loonngg week later we got the test results back... NORMAL!! The first good news in awhile.
After the initial tests and appointments, we tried to focus on enjoying the rest of our summer. There were a lot of breakdowns, a lot of asking God "why?" but slowly, we began to accept that our baby would need open heart surgery.
On August 5th, we left for Grand Marais, MN, to surprise Jacee (my sister) at an engagement party planned by her fiance, Elijah. We decided not to pack the pregnancy bag because Kipp was only 36 weeks and he was breech at our last appointment, so there was very little chance of him coming early.
We (Levi, Kash, and Krosbi) travelled with my Mom and Dad, and we decided to stop halfway in Bemidji, MN. We spent the night in a hotel right on the water. It was beautiful.
On our way down to supper, Krosbi (2 yrs old), got her arm caught in the hotel elevator! Thank God she is so tiny; she was totally fine! It was extremely stressful though, and caused my water to break! I didn't realize it at the time, because it was a slow leak rather than a gush.
The next day (August 6th) I felt "off". I was having more Braxton Hicks contractions and felt like I couldn't control my bladder. We had an early lunch, and headed to Grand Marais.
After what felt like 50 hours (haha) we made it to Grand Marais, MN! We met up with Jadi and AJ at our hotel and spent the evening on the beach. It was great!
August 7th, I woke up with more fluid, and started to worry that my water had actually broke. I went for a walk with my fam to grab coffee and we got back to the hotel I realized there was more fluid and a little blood.
We decided to play it safe and headed to the ER in Grand Marais; it was a small hospital but we had a wonderful doctor who confirmed my water HAD indeed broke! Now the concern was infection, having a premie with a heart condition, and where I could go to deliver.
The doctor called to St. Mary's in Duluth (2 hrs away) and they said they'd take me. I rode in an ambulance and Levi followed.
We arrived at St. Mary's late afternoon. They brought me up to the birthing center where they already had a room prepared for me. I was so scared for what was to come, but then our amazing nurse Mikah walked in; he calmed me down as I waited for Levi.
Mikah explained that a lot of specialists were going to come in and together we would come up with a plan, which ended up being: a C-Section, because Kipp was still breech. NICU would also be in the delivery room, and transportation would be ready for Kipp just in case he needed emergency surgery (in Minneapolis).
The delivery went as well as possible; I was really sad/scared about having a C-Section but it ended up being what was best for Kipp! Our doctors were on board with delayed cord clamping and tried to keep him with me.
He came out screaming at 7:01 pm and NICU tested his oxygen for several minutes. He had good pink color and seemed to be doing really well. Once NICU confirmed he was stable, they let me hold him skin to skin while I was being stitched up! I cannot describe how amazing this felt; we didn't think it would be possible.
Once I was stitched up, they took us to a Post-Op room. Kipp nursed and Levi and I started to wrap our heads around what just happened!
The next two days were a blur. Kipp had trouble stabilizing his blood sugar. We were told that we would need to supplement with donated breast milk until I could pump enough. We are SO THANKFUL for the donated breast milk!
We spent all of our time nursing, pumping, and supplementing with a syringe, and Kipp's blood sugar was checked every 2 hours. He had one very low reading, and we were told that if it didn't go back up on the next test, he would have to go to NICU. Being the fighter he is, his next test came back normal! He got to stay with us! He also passed his newborn screenings and the carseat test.
On August 10th we were released, which was perfect as this is when my family was traveling back home from Grand Marais, so we could go together. It was so nice to be reunited with the kids! The trip home went well.
While it is nice to be back home, the journey is FAR from over...
Kipp will have weekly Echos in Fargo leading up to his surgery, which will be at the U of M.
His heart will be monitored closely for this first 2 months and his team of surgeons will decide when it's time. When the time comes, we will be at U of M for about 10 days for surgery.
The surgery will be an open heart surgery to patch his large VSD and to shave off the extra tissue around his pulmonary valve.
After that, it is weekly follow up Echos in Fargo.
There have already been A LOT of tests, and there are more to come: echos, CT scans, along with his very specialized surgery and hospital stays.
We pray that his case will remain "mild" and that he will only need 1 open heart surgery.
Until then its a strict feeding schedule to help our little warrior gain weight.
We are so appreciative of your help and support in any form!
Thank you!
Justene, Levi, Kash, Krosbi, and Kipp Kouba
Co-organizers2
Jadi Engels (Organizer)
Organizer
New Rockford, ND
Levi Kouba (Beneficiary)
Beneficiary
Justene Kouba (Team member)
Co-organizer