Finally it was time for our second fetal echocardiogram with Dr. Krabill. Eight weeks from from our initial look at Arrow’s heart and now time to recheck… with hopes that the asymmetry on the left was still within a range that was not concerning. June 21st… I laid in the dark ultrasound room again, staring at the monitor on the wall while the ultrasound tech looked at Arrow’s heart, taking measurement after measurement. After 45 minutes, the required measurements were completed, the pictures of blood flow were finished and it was time to wait in an exam room to meet with Dr. Krabill to hear the results.
Dr. Krabill entered the room, with a smile, a warm welcome and sat down, looking at me with compassion. She began explaining she saw what she thinks may be a small hole in Arrow’s heart between the left and right sides. She elaborated that in the ultrasound it’s difficult to tell the size and if it is in fact a hole; this will need to be checked following delivery. She shared that if there is a hole and it’s small they can usually heal on their own; while if it is medium to large it will require surgery which is usually at 3-6 months of age. She continued to inform us that the asymmetry of the left and right sides is of concern due to measurements of certain left valves being small. This could be caused by a narrowing in the aorta, but is it hard to tell at this point looking at the heart given shadowing since she is in utero. Dr. Krabill explained given this, Arrow will need to have an echocardiogram on her own heart following birth to obtain definite information on if there is or is not a hole and on the asymmetry to determine if surgery is required, what kind and how soon. This means the decision was made that I was going to need to deliver Arrow at Swedish Hospital and would need to establish my care at Swedish Maternal Fetal Medicine.
Friday June 30th, I met with my provider in town to discuss the results of my appointment with Dr. Krabill, the decision to transfer care to Swedish MFM and just what everything meant. At this appointment, Dr. Hein explained that being at Swedish for delivery allows Arrow and I to remain in the same location, her to receive the proper care and attention she needs given her heart situation, until I can be released and she transfers her care to Children’s Hospital. In essence, it’s all about ensuring mom and baby have their needs met and if at all possible do not have to be separated after birth.
Tuesday July 11th, Aaron and I went to our first appointment at Swedish MFM. At this appointment an ultrasound was performed to check on Arrow’s growth rate given at her 20 week scan was in the 7th percentile followed by a meeting with provider, Dr. Harding. It was lovely to watch Arrow on the monitor, to see her heart beating, her cute little feet, her hands, her profile.
Following the ultrasound, which doesn’t provide us any information as the tech cannot tell us anything, we waited in the exam room for Dr. Harding. I felt nervous. I was nervous about the results, nervous to be meeting a new provider who would be part of my new care team, nervous about all the change that was happening to what I had planned for this pregnancy.
When Dr. Harding entered the room, I found myself slowly relax. He was kind and he was caring as he introduced himself to me, Aaron and Aysa, he was personable as he went over the current status of our pregnancy to ensure we were all on the same page. His bedside manner of compassion made it easier to hear the news that I was not prepared to hear: Arrow is now in the 3rd percentile for growth. This could be due to her Down Syndrome Diagnosis, her heart issue or it could be that my placenta is beginning to not work correctly and isn’t feeding her appropriately. He explained that when a baby is diagnosed with Down Syndrome, the placenta also has Down Syndrome therefore it can decide to not work correctly. Given this, the goal is to get Arrow to 37 weeks and then induce. Dr. Harding further explained that I would need to be monitored twice a week for ultrasounds, dopplers and non-stress tests to ensure her growth is continuing as desired, blood flow to Arrow from the placenta is good and that her heart is handling movements in utero well. He agreed to work with Dr. Hein to have me be seen Tuesdays in Seattle and Friday’s in town for the non-stress tests. He did explain if there is a change in her growth the choice may be made to delivery her sooner than 37 weeks.
Tuesday, July 18th I attended my second appointment at Swedish MFM. My appointment began with my non-stress test which I was told looked good - her movements were good and her heart handled the movements well. Hooray for a piece of good news - at this point any good news helped give me hope. Following the NST, I had an ultrasound, not to measure growth, but rather to watch her movements and check her tone. The tech was able to obtain an adorable profile picture of Ms. Arrow with her fists in front of her face - this was my treasure of the day.
Finally, it was time to meet with another provider, the ARNP / Certified Nurse Midwife who is part of the Swedish MFM team. I can’t recall her name. I just know she was real, she was kind and compassionate as she went over the results. I remember that while she was a provider giving me medical information about my baby, she also saw me as a person and connected with me as a mom. She made receiving the information she had to share more bearable. She shared with me the following: The NST looked good; the ultrasound movements looked good, Arrow’s tone looked good and the amniotic fluid levels looked good. The area of concern is the blood flow on the doppler, from the placenta to Arrow has begun to decrease and become restricted. This can continue until the blood flow is absent or reversed - both of which are not good for Arrow. Given this, she strongly recommended that I have a steroid injection to begin to help mature Arrow’s lungs as I am 32 weeks pregnant and lungs don’t begin to mature until 34 weeks. She further explained that there is a high risk I will delivery very soon; that with the restriction of blood flow I need to have my bags packed and with me at every appointment in case they decide to admit me for delivery. She continued to let me know that I am at a high risk for c-section as growth restricted babies often have trouble handling labor. I was also informed that my local hospital where my NST will be performed on Friday is advised to contact Swedish immediately should they see anything of concern.
I tried hard to keep the tears in, to remain composed and just absorb the facts as she spoke. Remaining composed worked until she asked me how I was, how I was handling all the news. It was then the tears fell. This wasn’t what I had planned; my kids were to be at my delivery and I currently have one son in Germany till Tuesday and another in Oklahoma until August 17th; I hoped for a vaginal delivery; I had hoped to make it to 37 weeks. Now I live my life in 3-4 day increments; paying attention in between appointments to Arrow’s movements in case they change and I need to contact the on-call provider. I had so many thoughts of what needed to be done still running through my head - between home items and work items. I made it to the car somewhat collected; but once I shut the door to my car and had Aaron on the phone, by composure fully fell and I sobbed as I talked with him. My emotions were and are all over the place. This is not how the pregnancy was suppose to go for us. I thought I still had at least 5 weeks to prepare a house, her room, my work for her arrival. I thought I still had a chance of a vaginal delivery, with my kids home and present. I thought our only concern was her heart. Now it’s all upside down. I could meet Arrow anytime, I have little time to prepare a house, her room or my work for her arrival. I have a very low chance of a vaginal birth and possibly only one kid home for delivery, if lucky two. I try not to sit in wallow, or have a pity party. I know others have it worse than me; I know I have a great care team. I know I have great support around Aaron and I and our family. I know I have a faith that I will stand in to remain strong and I know God is close the broken hearted. I cannot question why my body is choosing to not feed my baby; I cannot question why I have to worry if she will survive; I cannot question why about any of this because the why gives no answers, no peace but only more uncertainty.
Tomorrow is Friday. We have had both our steroid injections for Arrow’s lungs and tomorrow we have our next NST. Our bags are packed and will be in the car should we have to go to Seattle tomorrow to deliver. Baby clothes have gotten washed (thanks to help of Aaron’s mom), cradle in our room ready, and premie clothes are in a bag for Arrow (thanks to my amazing co-workers). I pray tomorrow Arrow is great and we just have one more day, two more days, three more days, four more days and many more days of her in utero growing and gaining. Each day is a win for her and a chance for me to walk in FAITH OVER FEAR.
I'm a single mom of four radiant kids who believes in relationship with Jesus over religion. I'm trying not to battle with fear anymore - instead I am choosing to follow what God has called me to do. With that you'll find me here, trying to be brave, with the goal of being authentic and honest about God, single parenting and the beauty in the mess of my joyful chaos. It's sure to be a journey... and I am blessed to share it with you!