Heath and I had a 28 week ultrasound scheduled due to the finding of a choroid plexus cyst in the brain at the 20 week ultrasound. We were not concerned about this finding because we learned that it was very common and would resolve. I even learned that my nephew Avett had one too. So at our 28 week US we were pleased to learn that the cyst had resolved itself. The tech then went ahead to do a check of all other anatomy measures and I noticed that she was spending an awful long time on the heart. When our doctor came in he informed us that the heart looked a little enlarged so he wanted us to see a Pediatric Cardiologist for a fetal Echo to rule this in or out. Our doctor was hopeful that the heart was just looking big due to position. Heath and I were not too terribly concerned and felt sure that it would be a positional issue.
Dec 10, 2014
Heath and I met with the Pediatric Cardiologist and were pleased to learn that the heart looked structurally normal. He did note a slight enlargement of the superior vena cava (large vein that returns blood from the head and upper body to the heart). He could not find a specific reason for this enlargement but gave us a couple of theories that sounded very manageable and likely to resolve without intervention shortly after the baby was born. Heath and I were relieved that things were going to be ok.
Dec 11, 2014
My regular doctor called exclaiming concern about no issue with the heart and wanted to rule out a vascular issue in the brain so he was having me see one of his colleagues the very next morning. I was very concerned about his urgency so I talked to my OB about the situation and she reassured me that he was just dotting the I's and crossing the T's and that vascular issues in the brain are extremely rare.
Dec 12, 2014
We met with our doctor's colleague for a second opinion and ultrasound of the brain. This physician was extremely concerned about enlarged blood vessels in the brain and the increased blood flow that the Doppler was showing. This physician felt that it was imperative that he get a fetal MRI performed on the baby and then admitted me to the hospital for monitoring of the baby. This physician wanted steroids started and made us feel like the baby was going to be delivered by week's end. I was only 30 weeks and 3 days along at that time. When it comes to prenatal delivery every day is extremely valuable and we were frightened. I was admitted to the hospital where Heath works, Kennestone, that evening. My first steroid injection was administered that evening and the second one was administered the next evening. This was very important as it helped to mature the baby's lungs by 1 week which would make a big difference if delivered prematurely.
Heath and I were blessed with his parents coming to stay at our home this morning. They helped tremendously to take care of Coalie so Heath could be with me whenever needed. They also did a lot of work around the house and put together the glider for the nursery. We also had another ultrasound this day to start monitoring the baby's heart for any major changes and/or signs of distress. The baby's heart did not look any different. Heath and I had decided the night before to find out the sex of the baby. Given the seriousness and potential emergent situation we were facing, holding onto the surprise of the sex was no longer exciting and we wanted to feel more connected to our baby. The first happy news we received since the whirlwind started was that we are having a little princess!! This was extra happy news because our OB had informed us that white boys do the worst in the NICU and baby girls are very strong fighters. Heath did proclaim that of course we were having a girl and she was giving him trouble before she even got here. He then declared that she is grounded until she is 25!!! Since she's my daughter that was probably a given but she has really given herself a head start now :)
Dec 14, 2014
Since I was not on bed rest the doctors agreed that I could do yoga in my room and some walking around the hospital which made a huge difference because I could already feel how deconditioned I was becoming. The physical therapist in me did not want to create any additional problems from the lack of activity!! This day we had many visitors including our friend Tina Fisher, Heath's cousin Zach and his wife Carrie, Heath's parents and finally Heath's good friend Adam from back home and his wife, Christie. Adam is a preacher and he lead us in a beautiful prayer that really helped us to feel closer to God and to help us better understand this journey we are being placed on. That night Heath's step-mom, Rita, spent the night with me so that Heath could get a good night's sleep for work.
Dec 15, 2014
Heath and I had another US and Rita got to join us for it. She got to see our baby girl move which was really awesome for her. We also learned that things looked about the same. This day my high school friend, Jenni, drove over from Charlotte to spend the day with me which really helped to pass the time. Then my parents arrived into the town around 10pm that night, having driven all day to come provide us added support. I was really grateful to have them here during this frightening time.
Dec 16, 2014
I was finally discharged from the hospital in order to travel to downtown Atlanta to the children's hospital in order to have my fetal MRI performed and read by a well regarded Neuroradiologist. Both of our parents joined us for this appointment. It was nice having their company since our appointment got delayed by several hours. The waiting is the worst. The MRI was a bit uncomfortable but I endured it so that they could get the best pictures of our baby. Once it was over the physician gave us his preliminary reading based on a quick glimpse of some of the images. He confirmed that there was definitely a vascular malformation in the brain, the heart is enlarged and there is a possibility of some brain damage but he was hopeful that the distortions he was seeing were just the extra blood vessels. So we left the MRI feeling indifferent since he more or less confirmed what we already knew but couldn't provide any additional information.
I got to remain outpatient from the hospital but had to start seeing the maternal fetal medicine doctor on Mondays and Wednesdays for ultrasounds and see the Pediatric Cardiologist on Fridays for Echos to keep track of the baby's status. So this day we had an US with the MFM doctor and my parents got to join us for this appointment where they got to see their granddaughter moving around. Again things looked stable.
Dec 18, 2014
The Neuroradiologist called me this afternoon to inform me of his final report on the MRI. He explained that what the baby has is very rare and so he spent extra time reviewing the images and consulted other doctors prior to making his final judgements. What he had determined was that the baby has a Pial AV fistula on the left side of the brain. This vascular abnormality is causing excessive blood flow which is putting pressure on the heart and causing it to enlarge. This extra blood flow is also staying in the abnormal vessels and not supplying to the brain like it should. This lack of blood flow is therefore causing damage to all of the lobes on the left side of the brain. This is called a Steal Phenomenon. We cannot know the extent of the damage to the brain or what the will mean for her quality of life and functional abilities. What the doctor could tell us is that we need to meet with a highly specialized physician, an Interventional Neuroradiologist, who will likely perform surgery on our baby shortly after she is born. We meet with that doctor on Dec 31. We hope to learn the plan for when delivery should occur, which hospital we need to deliver at, who will be present at delivery and who will be on stand-by, when surgery will need to occur. Overall, this was devastating news. I was very grateful to have my parents there at that moment and Heath rushed home from work to be with us.
Dec 19, 2014
Heath and I met with a different Pediatric Cardiologist for another Echo to determine how the heart is doing. We learned that since the first Echo (on Dec 10) the baby had developed decreased ventricular squeeze, continued enlargement of the right side of the heart and mild tricuspid regurgitation. He qualified this as mild right sided heart failure which is a symptom of the brain issues. These heart problems will be resolved once the brain can be addressed.
Dec 20, 2014
At this point Heath and I have learned a ton of information. We have both been extremely grateful to work in the medical field and understand anatomy and physiology enough to follow all of the new information we are constantly learning and to be able to ask appropriate questions. With no more doctor's visits for the weekend we celebrated Christmas with my parents. We took them out to dinner and then came back to the house for present opening. It was a really special time that we got to spend together. Baby girl King got very spoiled by her grandparents and aunts/uncles/cousin Avett!!! Baby girl King and Heath and I also got very spoiled by me parents painting the nursery and cleaning our carpets. They helped to relieve a ton of stress off of us as we prepare for a potential premature delivery. My parents (undesiringly) headed back home to WI the next morning.
Dec 22, 2014
I was able to return to work this day at 5 hours per day (my normal schedule would be 10 hour days). I am grateful that the doctors are letting me continue to work some. While I wish I could work full days I am now in need of tons of time to go to all these doctors visits so it is working out ok. I had another ultrasound this day at my MFM doctor and things continue to look stable. Heath and I have developed a caring relationship with our ultrasound sonographer as she is the only consistent person we have seen since all of this started. She is also the person that first noticed the enlarged vein in the heart and brought it to the attention of the doctor. Because our baby girl has damage to the left side of her brain we are concerned that she will have hemiplegia (weakness or paralysis of the right side of her body). Our sonographer, Julie, was sweet enough and determined enough to show us on US that the baby was able to move her right arm and leg which was encouraging. Since then I have gone on to nudge the baby on her right side whenever she is active to encourage her to keep using her right side. If she keeps using that right side then her brain will continue to make the connections even if that area is damaged. I have also increased my Omega-3 and DHA intake to help nourish her nerves in the brain area.
Dec 24, 2014 Christmas Eve
Heath and I both worked in the morning, then had another US with Julie and our MFM doctor. Again the baby looks stable and we are continuing to focus on carrying her as close to full term as possible. Heath and I went out to lunch together and then spent the rest of the day quietly together at home with Coalie.
Dec 25, 2014 Christmas Day
Heath and I went to church which was very emotional for me but felt really good to be connecting again at the time of Jesus' birth. I spoke a lot to my Grandma Shirley in heaven as Christmas is synonymous with Grandma for me. Heath and I then spent the evening with our good friends James and Tina, Jame's dad and bother and sister-in-law who we are also friends with. They made us feel right at home and we enjoyed a wonderful meal with them.
Dec 26, 2014
Heath and I again worked in the morning and then had an appointment with our original Pediatric Cardiologist that we saw on Dec 10. Obviously, we now have a reason for the changes in the heart that he saw at that time. He agreed that the heart has diminished in function while increasing in size since he last saw us. He did however feel that these were still very minimal changes and still very manageable. He reiterated that our goal is to keep the baby in as long as possible so that she is born with as few of complications as possible. Therefore she will better tolerate any required surgeries. The doctors all need to keep monitoring her heart, and other basic measures, to ensure that it doesn't diminish in function to the point of being dangerous to her where she would be better off outside to receive medical attention.
Today we are just continuing to pray for stability, pray for recovery to her brain and pray for patience to get to Wednesday when we will learn more about her delivery plan and her surgical care thereafter.
Heath and I want to make sure every one knows just how incredibly grateful we are for all of the love and support and endless prayers we have been receiving. This is obviously a very scary time for us but we are trying to have faith that our baby girl will be relatively healthy and respond well to surgical intervention. We do not mind calls and texts but are not always able to answer immediately. We are also very open to discussing our baby's issues and are not offended by questions so please feel free to ask us.
Love to you all <3
H&M
