So the results from the tests are in….
What do we know now? A whole lot of nothing! Genetically speaking this child is perfectly normal, they can’t find a single thing that would explain why we’re seeing the abnormalities and deformities on ultrasound (US).
They did by the way take FOREVER to come back and we didn’t learn anything until we went in for our US a MONTH later! There are so many things we can’t control right now and this is one of them for sure.
So the tests aren’t revealing anything but the US is a whole different story and here are the updates on that…
A quick recap, last time we were still seeing deformities of the face (jaw specifically) and all 4 limbs. Internally things were looking pretty good and seemed to be on track. Now, we know that as the baby gets bigger they are going to see more so we are going into each appointment fully expecting that things that were ok or fine before may have worsening developments.
Anyway, on this US (almost 18 weeks) what we learned is there seems to be a cyst growing on the brain. Not in the brain tissue, kind of right at the top, under the skull. We don’t know what that means or what impact it will have yet, but a new development from last time.
As they moved down the body from head to toe, we saw that little jaw still not forming properly, sitting extremely far back and not fusing together at the center. So if you can imagine sort of each side of the face starting to form and then meeting at the center to form one solid structure, this little jaw bone is just not doing that. Which is it’s own level of complication – airway, eating…I mean you never really realize it but that’s the structure that creates a space for life. A pathway for breath to reach the lungs and food to reach the stomach which drives our existence.
Then we move down to the heart, still beating strong, but they see a narrowing of the arteries this time. Another new development.
The tech moves down to check the abdomen and is having a hard time seeing the stomach. Let me clarify…on US they look for the stomach to fill an empty. An action that happens as the baby swallows. This does not seem to be happening for our little one. We don’t know yet why, either it’s not or can’t…I guess both really. We don’t know if that means the esophagus and stomach are not connected or that the lack of adequate positioning of the jaw is preventing this action. We just know it’s not happening. This prevents the lungs from strengthening and may ultimately cause fluid build up but we just don’t know at this time.
Do you have any idea the frustration of not knowing? Not getting any answers? Just seeing what is! It’d have anyone ready for the straightjacket and to be checked into a padded cell! Most days that’s where I feel like I belong.
So there’s that! Then we see the kidneys are small but the bladder is full which does mean they’re functioning. At what capacity will probably only be revealed as we head into future appointments but could also lead to a build up of amniotic fluid in the future. That is not happening to date though.
On to the limbs…those beautiful little fingers and toes that every parents loves to see, still not present. There’s upper arms and legs but the lower parts are essentially nubs, lacking any recognizable shape. And you just become paralyzed at the thought of what this little life faces outside of the womb. Almost certain death and any chance of life significantly impaired. And your heart just breaks.
As I watched the figure of our baby unfold on the TV monitor I felt a wave of anxiety hit. I felt like my legs were going numb, my heart began to race, heat just built out of nowhere. I needed a break and whispered to my husband that I was feeling dizzy. Thankful for a caring tech who has graciously walked us through this whole process and who quickly had me roll to my side and took the opportunity to take the findings to the doctor prior to our consult.
We talked with the physician and she walked us through what we’d just seen on the monitor. Individually all of this could be treated surgically (we’re talking LOTS of surgery) post birth (well except for the limbs) but all together they compound for a very big problem and lots of complications with no guarantee of life, with or without surgical intervention.
There’s no real way to describe those moments – time sort of freezes, you don’t really feel like you have an out, there’s definitely no relief, and your mind sort of wanders to “why am I here”…and by that I don’t mean why am I alive, just why am I in this, going through this, no mother and father should have to hear this news about their child.
I often feel this is how Jesus had to feel about us. Why did he have to die? Why did God have him here? Not that I am comparing myself to Jesus, although I guess we are called to be like him. I’m just trying to say, He was positioned by the Father to be our redeemer. If He could have authored His life, I know he would have had other plans. WE know that because he asks for the cup to be taken from him, though quickly utters “not my will but yours be done”.
So this is where God has us. And each day we’re just trying to walk through, step into His grace, survive the day, and hopefully be a part of a testimony unfolding. I don’t have any other answers than that and have to believe this has been given to me to share. Not my will be yours be done.
Thanks for walking this journey with me! Until next time…those are our updates….