Oh my fellow travelers, it is with both complete sorrow and just the slightest bit of joy that I inform you that our Norah Maye is perfectly healed and safe in the arms of Jesus.
After what was a much shorter than anticipated ultrasound this morning, our doctor confirmed that Norah passed within the last few days. We could tell something was wrong this morning when the ultrasound tech didn’t spend much time taking pictures and very quickly checked for a heartbeat. She was in and out much to swiftly and as we waited about 20 minutes for the doctor to confirm what we knew was very likely, my emotions were all over the place…They still are.
At first Jonathan and I didn’t talk about what we were both thinking until I said, “It looks like she has grown…she just wasn’t wiggling much at all.” Jonathan agreed and eventually said, “I think God answered our prayer. He healed her.” And tears streamed down my face.
For what seemed like an eternity I thought about and tried to process the likelihood of losing her and at the same time tried to have hope that it wasn’t true. I wasn’t expecting to hear that we had lost her today so I tried to wrap my head around continuing the journey that looked grim, just based on what we did see of her little head. I tried to imagine life without her all the while thinking about maybe getting to keep her. And as we kept waiting, the reality seemed to sink in more.
The doctor was compassionate, which was an answer to prayer. He was matter of fact but explained to us very gently what he saw and what the next few days may look like. He told us that she is small and explained her diagnosis more before confirming that she was in fact no longer with us. Up until this appointment I have been able to keep tears at bay until we got to the car, but they fell freely for me (and the ultrasound tech) this morning as the doctor continued to move the ultrasound wand trying to get a good angle of Norah for a picture that I requested.
And then we left…and we prepare for what is next. Tomorrow morning at 5am we will head to the hospital and I will be induced. I’m not completely sure how tomorrow will play out. All I know is that I was scared for our appointment today and I am all the more scared about tomorrow and what will be required of me.
We continue to appreciate all the prayers we can get. More specific prayer requests include:
- A good nights rest so Jonathan and I have energy for what could be a very long day tomorrow.
- Safe travel for my parents making their way here from Rapid City, SD to be here in time for the appointment in the morning.
- Peace and calm during the induction and labor process.
- For a special time when we get to hold and see her.
- And for all the unknowns that I don’t even know need to be prayed for.
And already we wait with great anticipation for when we can join our Norah Maye and our first sweet Little One in the arms of Jesus.
I almost feel like I should begin this post with “Hello fellow travelers!” It is days like today when I feel like we are all squeezed onto a VW van and taking a journey to a destination only known by our driver. I feel surrounded by support, encouragement, and prayers. I am confident that I am not alone in a reality that seems so daunting and overwhelming.
On other days, like this past Monday, I still knew I was supported but it seemed as though everyone else chose to get off the van and it was just me and the driver traveling. I felt alone. It was only me sitting there crying and talking to the van driver about how exhausted I am from traveling on this journey that seems to never end the same journey that I don’t want to ever end. This journey with Norah is lonely sometimes, even in the midst of the support. I told Jonathan on Monday, “I want this all to be over…but I want it to end with Norah in my arms.”
I guess that is all to say, I need/feel/depend/appreciate every once of support and prayers that are offered on our behalf. I don’t take any of them for granted, especially on days like today! Lets load up that van and see where God is going to take us on this Norah journey!
We had a doctor appointment today and our little Norah Maye is still with us! We heard her quickly beating heart (140bpm) this morning and are praising God for her little life!
We also found out that we are still in the midst of a wait and see season. Our appointment on Monday (Sept 14) will hopefully give us a better idea about what we are facing. The Monday appointment will consist of an ultrasound where we will see the brain as well as any physical abnormalities she may have. And we will have the amniocentesis which will give us definitive genetic results.
The waiting is almost unbearable! As time moves on we grow more and more attached to her and we pray so hard that God will glorify Himself through complete healing of Norah’s brain. We know He can do it!
I am scared by it all right now. I’m scared that God will decide not to heal her. I’m scared that the diagnosis will be worse than we thought and that the physical abnormalities will be too shocking to even look at. I’m scared that it will be painfully obvious that we won’t be able to keep her. I’m scared that I won’t be strong enough to handle the news and will fall apart in the doctor office. I’m scared, but God is not and He is the one in control. And so we will trust in His plan even when trusting in His perfect plan is so painful in the moment.
We had a general OB appointment this morning…and to be honest I have quit being hopeful about these kinds of appointments. I haven’t had a “normal” pregnancy appointment ever, and I don’t expect that I ever will. That being said, it seems weird that this appointment was probably as “normal” as it will get for me.
These last few days I have really tried to come to terms with the fact that this whole thing could be over before it really even starts. The statistics of a live birth of my baby don’t look good. In fact…
“It is estimated that HPE affects between 1 in 5,000-10,000 live births. Since many pregnancies with a fetus diagnosed with HPE end in miscarriage, the frequency of HPE among all pregnancies may be as high as 1 in 200-250. Current studies indicate that only 3% of all fetuses with HPE survive to delivery and the vast majority of these infants do not survive past the first six months of life.” – http://familiesforhope.org/what-is-hpe/
HPE = Holoprosencephaly
Those are depressing statistics…but then I think, what in the world do statistics mean to me? I was the one who just a little over a year ago had a partial molar pregnancy. You probably don’t even know what that is…thats because they happen in less than 1 in 1,000 pregnancies. So statistics haven’t worked in my favor yet…will they ever??
The appointment itself was uneventful today. Our little Wiggles is still wiggling and has a strong 150bpm heart beat! We had a good talk with the doctor about what things look like moving forward, and to sum it all up in one word… “wait.” Wait and see how long this baby is going to remain here on earth. Wait for what seems like an inevitable miscarriage. Wait to see if we get to 20 weeks when more testing can be done and more plans can be made should pre-term labor happen. And so that is just what we will do. We also found out that the genetic blood test I took two weeks ago came back “inconclusive” because they didn’t have enough blood…GRRRR! So I was poked again, something I am getting quite used to.
The doctor pushed terminating the pregnancy again…twice. It took me being very firm and using hand motions to emphasize my point that that will NOT be happening! We will fight for this baby’s life…because it is still a life that God has created! And I honestly can’t even imagine making a conscious decision to just end things without giving God a full opportunity to do HIS thing.
So how am I doing today? I’m frustrated. I’m frustrated that we will wait and in the end the result will still not be what I want it to be. I’m frustrated that I can’t DO anything to change or fix this situation. I’m frustrated that the doctor thinks termination is a good idea. I’m frustrated that the blood test I took two weeks ago came back “inconclusive” because there wasn’t enough blood. I’m frustrated with God that He has chosen me for this assignment. I feel like a teacher called on me to answer a question and my head was down trying not to make eye contact. Don’t pick me Lord…I don’t know what I am doing!