Another Unexpected Journey

Part 1:

Early on in the summer of 2022 we went on a couple different vacations with our families. We did a children’s museum, zoo, and a few other fun things with my in-laws. A few weeks later we went hiking through some caves, a museum, and other fun things with my family.

But the whole time, we were keeping a secret - we were expecting #3! It was later exposed at Mr. Blue’s 5th birthday party. And don’t worry, I didn’t steal his thunder, he was actually the one who told everyone. We had told the boys pretty early on and just decided if they tell people, they tell people, it can be something exciting for them. So the secret was out and we were excited to continue to grow our family. 

When I was establishing prenatal care for this pregnancy I had decided to go another route. I chose midwives this time because frankly I was just tired of standard hospital births and doctors, because I felt I wasn’t ever listened to. One thing I had shared with them was that I think I may have had a miscarriage at the end of 2021. Based on everything I told them, they confirmed that yes, that’s probably what happened. I chose to not go in because I had been through it before, I knew what to expect and going to the doctor would’ve just been more frustrating - so I just dealt with it and moved on. It might seem callous, but it’s what I needed to do. Right away I fell in love with the midwives I had chosen and they were onboard with everything I had hoped to do differently with this pregnancy and birth. Little did I know, God had other plans for me. The pregnancy was pretty smooth, no issues - little babe was growing right on schedule and we were excited. Throughout the pregnancy every time I prayed, I just asked God to prepare my heart. I didn’t exactly know why that was my prayer at the time - although I had an idea, but he sure knew.

Around 24 weeks I went in for the anatomy scan and to have a fetal echo done. The fetal echo at this point was just a standard routine that I had done with all pregnancies thus far since my husband was born with a heart defect. We were able to go to this appointment together since my mother in law came to watch the boys. At the end of the scan, I looked over at Nic and said - this baby has a heart defect. I had known enough at this point to watch the letters they type next to things on the scan and I saw the tech type in VSD. Nic said he wondered if something was wrong because she had gone a little quiet and didn’t say much before saying that the doctor would be in to see us soon. So, Nic did a quick search and read that a VSD didn’t necessarily mean surgery, and if surgery was needed it also wouldn’t necessarily be right away. So we had a little hope that it wouldn’t be too bad. Then the doctor came in and told us our baby had TOF, Tetralogy of Fallot - the same heart condition my husband was born with. TOF is a heart condition with a series of 4 heart defects, and until we could get in to see a specialist we wouldn’t know the severity. The doctor was so kind and empathetic, but right away said my birth plan just went right out the window and the rest of my easy pregnancy went right with it. What would follow would be scans upon scans, appointments, non stress tests - a constant stream of doctors. Depending on the severity I was told I may have to deliver in Omaha so we would be near the children’s hospital so the baby could be taken immediately there if surgery was needed right away. It was about a week or so until we could get into the specialist so we had too much time to think about hypothetical situations. It sounds so incredibly selfish knowing that our sweet baby would need open heart surgery, but I was absolutely devastated for myself and the birth experience I thought I was going to have. Instead it sounded like there would have to be every intervention in order to ensure a safe delivery, a NICU stay, baby being taken away from me immediately. It was all too much and I was in a pretty dark place. I quite literally fell on my knees crying out to God - why. God had prepared my heart enough that I actually felt peace around the fact that my child was going to be born with a heart defect. What my heart wasn’t prepared for were all the unknowns, the change in birth plan, the things I THOUGHT I had control over.

We chose the Children’s Hospital in Nebraska for our care since we had family in the area and it wasn’t too far from home. When it came time for the appointment with the specialist we were able to take the boys with us which was nice because most places would not allow children under the age of 12. So they were finally able to experience the ultrasound with us for at least once this pregnancy. And we hoped it would give them a little comfort about having seen the place that Mom and Dad will most likely have to spend a significant amount of time at.

Once the ultrasound was done, they had an appointed person that took the boys to an adjacent room to sit with them and color and such while we talked about results and options with the doctors. While talking with the doctors they informed us that based on the imaging they believe baby to have what is considered, pink tet, meaning surgery would NOT need to be done right away after birth. Had baby been considered blue tet, surgery would be needed pretty soon after birth. This was great news for us, it meant we didn’t have so many logistics to figure out surrounding delivery time. I could deliver at our home hospital and we didn’t have to worry so much about the boys and being away from them for so long. One of the biggest things with this specific heart condition is that it affects the blood moving out of the heart to the rest of the body, causing a lack of oxygen. Hence the blue and pink terms, describing their skin color at birth. While that was a breath of relief, it didn’t mean we were completely out of the woods. Baby would still need surgery indefinitely, probably around 4 months old and we would have to monitor oxygen levels occasionally to be able to tell if there is any decline happening. One thing we definitely did not want to happen are these things called tet spells, and they can happen when baby is crying hard and loses oxygen - turns blue and passes out for a little bit. So needless to say we had a lot to process leaving this appointment, but overall we felt better than we did going in.  

In the following months it became apparent to me that this is what God was preparing my heart for, to allow my grief to happen over what I thought this pregnancy would be but then focus on accepting that this is our journey and to be able to be strong for our baby. After that visit with the specialist in Omaha, I now had to transfer my care from the midwives to regular OB care and also see the perinatologist. So between all those visits I had appointments almost weekly. Not only was it adding extra stress on myself but adding extra to Nic’s workload - trying to work from home while watching the boys - at least once a week. When I reached 32 weeks they wanted to see me once a week at the perinatal office for a scan and once a week at the OB for a non-stress test/doctor visit. I straight up told them no, that would put way too much stress on me and everyone at home. So we compromised with a much lighter schedule that worked for both parties.

One of the big reasons I had wanted a whole different approach to this pregnancy and birth - was that I was tired of being bullied by doctors and not feeling heard. With Mr. Blue, there was the ‘accidental’ water breaking. With Mr. Orange, the doctor stripped my membranes even though I had explicitly said not to and other comments were made about my choices during pregnancy during visits that were absolutely not appreciated. With this pregnancy, it might have been the worst I had ever been treated. And had I been a litigious person I might have tried to go after a certain Doctor - but instead I just said I refuse to be put in their schedule again. They were incredibly crass in their choice of words to me over a choice I had made and in these exact words said to me, “You know your child has a heart defect, so you’re just okay with killing your baby?”. I’m not sure how I held my composure, but I did and just told them my choices were my own and got the heck out of there. Needless to say, I was so incredibly over doctors and appointments and was getting increasingly stressed as the weeks went on.

We at least had one exciting thing to help us pass the time - we all went to Arizona the beginning of December that was a nice break away from the doctors and the appointments and just be able to have fun as a family of 4 before the craziness. We went for Nic’s work Christmas party and he worked a few days in the office while the the boys and I revisited most of our favorite places, parks, got to see some family and just enjoyed our time there.

As with most things, there were many blips with our trip but we just rolled with it and made the most of it. Nic and I even got a night out at the Christmas party, which was fun to be able to do before facing reality again back home. Flying with littles in carseats is crazy business, but we are glad we did it, especially knowing what was coming once we were back home.

Once we got back home we were preparing for going into ‘lockdown’. Baby was due at the end of January and since we knew there would be a NICU stay and we absolutely did not want to be denied access to our child, we knew that meant staying out of the public so no one in the family got sick. We celebrated Christmas with our families and then said goodbye to socializing as we knew it for the next couple months. Our life group from church was so incredibly generous and they periodically brought over different themed care baskets for us to enjoy while in lock down, which we were so appreciative of. We also were in planning talks with our parents about who is going to be able to come stay with the boys when we go to deliver. We at least knew that if I didn’t go into labor on my own they were going to induce me because they absolutely would not let me go even a day overdue. Our parents still work full time so we didn’t expect them to fully go into lockdown themselves but just to be mindful of what they could potentially be bringing into our home when we would soon have a medically compromised newborn. And I was also still going to weekly appointments so I was just very diligent with washing hands and changing clothes as soon as I got home. 

Next time we get closer to delivery and meeting our sweet baby!

XOXO, mischief managing momma

Oldest (1)- Mr. Blue

Middle (2) - Mr. Orange

Youngest (3) - Mr. Green