At 12 weeks, I saw my neurologist for the first time and was sent right to the ER where I had so many tests run. I had 3 failed spinal taps before a 4th successful one followed by a lumbar drain. I was still losing my vision and still in so much pain but we finally had a diagnosis for me. I was diagnosed with Idiopathic Intracranial Hypertension (IIH). After a lot of back and forth, we decided to go ahead with the brain surgery for me to have a VP shunt placed. This surgery happened at 13 weeks pregnant. We had a quick ultrasound before and after my surgery to check on our sweet baby and she was doing amazing!
From then on, I was considered high risk for my pregnancy. I had a lot of follow up appointments with neurologist, neurosurgeons, neuro opthamologist, and of course my high risk doctor. The entire time everything was looked perfect with our baby. At 15 weeks, we found out we were expecting another girl! At 20 weeks, I needed to have my VP shunt adjusted because it was over draining and causing me more issues. Around this time, we also found out Koryn’s orders for Alaska would be cancelled due to my medical issues. Shortly after, we found out we would be moving to Washington state instead! Then we started the whole moving process on a short timeline.
I got to Washington at 32 weeks pregnant and had my first midwife appointment the day after we got here. My midwife wanted to clear me by their MFM (high risk doctor) to make sure I could be seen with midwives and even possibly deliver at the birthing center!! This was amazing news since I was seen at a birthing center with Kenzie. Then I had my appointment and ultrasound with the new MFM. This is where our world started spiralling.
The doctor said he would clear me to deliver at the birthing center but there were some concerns with our baby’s heart. He wanted us to have her checked out again ASAP and referred us to the Seattle Children’s Hospital. I was thankfully about to get in quickly. The day before I turned 34 weeks pregnant I had a fetal echo done.
This is when we found out our sweet little girl has a congenital heart defect (CHD) called Hypoplastic Left Heart Syndrome (HLHS). The left side of her was much smaller than the right and it effects how her blood flows and processes throughout her body. Since she is still growing and my body is doing its job to help her blood flowing and pumping she is doing great.
However, due to this condition we have a long road ahead of us. We will be moving into the Ronald McDonald house very soon and will be there until we can bring our baby home. She will need several heart surgeries with the first happening shortly after she is born. I will need to be induced at 39 weeks so we can ensure she makes it safely but the plan is for me to still have a natural, unmedicated birth.
Once she is born, she will head to the NICU while we wait to see how she is doing. After she has her surgery, she will be moved to the cardiac ICU. We have many, many more appointments over these next few weeks and sissy has a long road ahead of her. The doctors and specialist I spoke to after estimating a 4-6 month stay for our little girl and I will be in Seattle (an hour away from our home) while she is there. There’s still have a lot we need to figure out and that we will learn along the way.
I’m hoping by writing things down that it was help me handle everything we are facing and give me an outlet. It’s been a long and emotionally few days for our family but this baby is already so brave and so strong.