It’s been a very long day – we started at 8:00am and as I write this at 5:00pm we just now finally wrapped up our medical visits for the day. So far John and I are both feeling cautiously hopeful and optimistic, however we did have a bit of a scare today that I will go into more detail about later.

This morning we went in for our second follow up ultrasound with the Fetal Therapy clinic. I didn’t get much sleep last night but the night before our appointments I don’t usually sleep well so that’s become an expected experience. Our scan today didn’t reveal a ton of changes other than my fluid is lower than it was last week by ~1cm. This sounds concerning however because the fluid is already so low, the tech who performed the scan stated she has fluid in her stomach and bladder and that’s likely where the difference is – so ultimately no loss of fluid overall however no gain of fluid either. We got to see her face and saw her moving around – in the past week her movement has increased significantly and she was busy protesting during the ultrasound today. It sounds like we have a feisty little girl on our hands which we are grateful for.

After the scan with the tech, the fetal radiologist came in to confirm what was seen on the scan and offered herself up for questions. There were some burning questions we had from the week prior that have been on my mind – such as the deformities seen in the scan that was mentioned to us last week. When we talked to the doctor about this today it was explained further that the only deformity they are seeing right now isn’t really a deformity but is an abnormal skull shape. This is explained due to the pressure of low fluid which has caused her head to push against my uterus, however this is something that is able to be corrected after birth. Not to sound shallow because we will love our child no matter what, but I also wanted to better understand if they were seeing abnormalities with her hands/feet and/or her face. It isn’t just necessarily about how she might look at birth, but also there’s concern of contractures, club feet, or hands that may not operate as hands should which can impact her quality of life and future development. To our relief they are not seeing anything unusual with anything else on our baby. Wow! What a relief that is to know that although she has had some complications, she is developing “normally”.

After the scan we had the opportunity to meet with our doctor who has been overseeing our care thus far. She is hesitant to be overly optimistic just because in reality you aren’t seen by her team when things are going great, however she did indicate our baby is very stable which is promising. We met with the palliative care team to better understand the level of support they provide families of children who may have complications at birth, and also were set up for a NICU consult for later in the day. We have a plan in place for next week’s appointment where depending on Chandler’s growth (they measure this biweekly), I may be admitted for monitoring and so antibiotics and steroids can be administered to ensure I don’t go into labor early, and to help with lung development.

We made it home for lunch, but not long after I noticed that I had some wetness in my underwear which I was worried was amniotic fluid. A call to the doctor sent us back to OHSU again where I was admitted to L&D triage to have an exam to confirm if it was a fluid leak. Fortunately, the fluid was found to NOT be amniotic fluid so we are back home again. The non-stress test done while waiting for the results from the exam was really promising and baby Chandler got to show off again how strong and feisty she is with how much movement she was showing (our midwife even commented on how surprised she was to see so much activity at this gestational age).

Once we got home, we had a consult with the NICU team. It was kind of a mixed bag of emotions having the conversation with the neonatologist – partly, we both feel so insanely appreciative and grateful we have made it to the point where we have a need to meet with this team. On the other hand, we are still not at a gestational age where our baby has a strong chance at survival. Every day and week I am pregnant we are one step closer to having a healthy child. Ultimately, what we have understood from this conversation is 28-30 weeks is really the true minimum for most optimal chances of survival, however babies can still survive and thrive if they are born sooner but having such a small baby already our circumstances are a little different.

In summary, our doctor still is thinking I have PPROM and a slow leak of fluid which is contributing to the oligohydramnios diagnosis. The fluid is stable but not increasing even though we know Chandler is consuming fluid and peeing which supports her theory. Although having a fluid leak is never a good thing, we have been able to almost definitively rule out kidney or other major organ problems, so that is amazing news we are so happy for. Next week depending on how much Chandler has grown since last week will determine if I am admitted to the hospital. If I am not admitted, we are prepared for admission at any stage and will be taking it week-by-week.

Overall, we have a lot to be grateful for and we are. For the first time since receiving this diagnosis at 19+5, we feel like there’s a chance we will have a baby to bring home. Please continue to send us your prayers, positive thoughts, and positive vibes. We are grateful for all of the people in our lives who are so invested in our journey and are cheering baby Chandler on. More updates to come next week…