Here’s a recap of the last 9 weeks:
Going back and thinking through all the details that have been the whirlwind of the last 9 weeks is as much for my benefit as anyone else’s! We have received much information (as in, more than we’ll probably be able to process), experienced many highs and lows, and already see God moving and writing a magnificent story for Shiloh Joy.
June 25th appointment
· We went in for a standard 20 week ultrasound (thankfully Zachery was able to go to this one with me!).
· During the ultrasound I thought that I could tell that there was a cleft lip, but the tech doesn’t say anything about the scan and waits for you to talk to your doctor after.
· Dr. C came in and told us that our baby does have a cleft lip and palate and that she wasn’t sure what was going on with the brain, but that something didn’t look normal and referred us to a maternal fetal medicine (MFM) clinic for a more detailed ultrasound and to meet with a specialist there.
· While it is hard to sit with the uncertainty of exactly what is developmentally different about her brain, we are continually praising God that the rest of her body (especially her heart) have always looked strong and healthy.
The news from this appointment came as a shock to us, especially after having such smooth and healthy pregnancies and births with Hadley and Paxton. While a cleft lip and palate aren’t what you want to hear about your baby at 20 weeks pregnant, they’re “fixable” things. But it was still surprising and hard having our expectations changed. Knowing that there will be several surgeries and hospital stays in our future sounded unknown and scary, knowing that I wouldn’t be able to breastfeed was really sad for me, and just knowing that birth and immediately after would look different was a lot to think about. We went into the next week praying that everything else looked normal with her brain development and waited for our next appointment.
July 1st appointment
· We went into the appointment with the MFM doctor (another appointment we’re very thankful that Zachery got to attend in person) not knowing what to expect, but thinking that they would say everything with her brain is fine and explain how to plan for a baby with a cleft lip and palate. This wasn’t the case.
· After a long ultrasound, the doctor told us that between the abnormalities with her brain structure and facial features, he highly suspected that she had Trisomy 13. (For those who don’t know, Trisomy 13 is a diagnosis that is not usually survivable and many babies diagnosed with this miscarry before delivery.)
· We opted at this appointment to do an amniocentesis for in depth genetic testing.
The doctor we met with was very matter-of-fact about the possible diagnosis and suggested the option of terminating the pregnancy with a grim prognosis for our baby. Not a thought we even entertained, and incredibly hard to sit there and hear suggested by a medical professional as an option for your unborn baby. Feeling her move all the time, and just knowing that her story is being written by the one who formed mountains and placed the stars in the sky, we know that regardless of diagnoses or outcomes, her little life is so valuable and meaningful to us and to our Father.
There was no holding it together at this appointment, we left feeling so heartbroken, but knowing and believing fully that God is sovereign, nothing surprises him, and he is always good.
This was also the appointment we found out that our sweet baby is a girl. After many many tears, Zachery and I sat in the Lot 56 parking lot of the UofA with our Chick-fil-a and talked about names. (Our original plan was to wait until birth to find out the gender, but the unexpected circumstances made us less interested in any other surprises and we wanted to be praying for our child by name). As we scrolled through random baby names online, feeling like none of the ones on our list were a good fit, we came across the name Shiloh, and just knew that this is the name Jesus had for our second daughter. Shiloh means peace, abundance, and His gift, we feel all of these things are true for our daughter. Her middle name is Joy, because no matter what the outcome is, she is our daughter and a joy to our family.
July 6th results
Our initial amniocentesis results came back that she does NOT have Trisomy 13, Trisomy 18, or Trisomy 21. We are so thankful for God’s hand over Shiloh, that her prognosis went from “lethal” to unknown. *Cue the happy tears.* Over the next few weeks more results from the genetic testing came back all being “normal,” which we are so thankful for, even though it leaves Shiloh’s future yet unknown to us.
July 30th appointment
· We had a second appointment with the MFM doctor including an ultrasound to check on Shiloh. Zachery was not able to come to this appointment in person because of COVID related policies doctors’ offices and hospitals have now, instead he facetimed into the appointment from the car in the parking lot, not exactly the same as being there, as thankful as we are for technology.
· She is still growing, but is small for how far along we are in pregnancy and they’ve labeled her with IUGR (Intrauterine Growth Restriction) as she was only in the 5% for size.
· With genetic testing coming back “normal,” the conversation shifted to not talking so much about survivability as to what her life may look like after birth.
· The doctor talked about how she will have delays and may have other health complications, but there is no way to know what to expect before birth.
· This doctor communicated that we just need to “wait and see” how Shiloh’s growing and doing.
· We’ve also been told to “hope for the best, but plan for the worst.”
We left this appointment feeling more hopeful for Shiloh’s future, that there’s a better chance we get to bring her home. There are still so many unknowns though, it’s hard to know exactly what to think or feel at any given time.
*After this appointment we went through the Starbucks drive thru on the way home and the kind individual in front of us paid for my coffee. Thinking about this small act still makes me cry. It was such a simple thing, but it was like a big hug from Jesus that he sees us in our messy state of sadness and confusion.*
After these appointments with the MFM doctors I’ve had appointments with my doctor, she has always graciously offered to print out the report that the MFM doctor sends to her for me to take home and read over. This has been amazingly helpful in understanding things from a medical standpoint. Seeing terms written down rather than trying to remember them after an emotional appointment has allowed us to understand a bit more of what they interpret from the ultrasounds.
Love, the Linns
Love, the Linns 