Mother's Day & a Tidal Wave

#mothersday #hillsandvalleys #Christiancrisis

After my appointment on May 5th that I described in my first blog post, Rip Current, things were actually kind of normal.

I got home and discussed with my husband what the doctor had told me, and that we would be going to Savannah Memorial Health soon, but we still did not know when.

The Savannah High Risk OB office called me Thursday (May 6) afternoon and basically told me that they were overbooked for the next two weeks, but that a doctor had to see me ASAP, so to be at their office on Monday, May 10. (I was glad to get in so soon, but gees, is that a bad thing that I got in so soon?)

Now that we knew the next steps to take, we told both sets of our parents the next day. I think I told my siblings shortly after that and one close friend, who I could trust to actually pray for us with what little information I could give. But the thing is...we still didn't know how to pray about it because we didn't know what it was. At this point, we had more unknowns than knowns (and, as of writing this, this is still the case). We were going to Savannah High Risk to hopefully rule out what my existing OB had seen, and to learn that Ruth was just positioned in an awkward position. Which was very plausible. Those strong willed second kids, am I right?

Then it was Mother's Day, May 9th. Honestly, you could not wipe the smile off of my face. This was going to be my Mother's Day do-over (thanks, Covid). We got to go to church with our whole giant family and take up an entire row for ourselves! Opening worship was great, and then my pastor gets on stage and introduces the sermon...

Seven Certainties for the Christian's Crisis

LOL. I looked at my husband and told him this seems super timely. I will include the sermon notes, as well as the live-streamed sermon itself, just in case you need a listen.

Sermon Notes:

7 Certainties in the Christian’s Crisis (Matthew 4:35-41)

1. God is allowing this circumstance to unfold for His glory. (Jeremiah 29:10-14

& Isaiah 55:8-9)

2. God is with you. (Isaiah 43:1-3)

3. God will allow others to learn from your crisis. (Philippians 1:12-14)

4. God knows your limits. (1 Corinthians 10:13)

5. God is greater than your crisis. (Isaiah 45:5-7)

6. God will test you in order to grow you. (Psalm 66:8-12)

7. God believes the crisis is worth the intimacy that we gain in Him.

(Mark 10:28-31, John 17:3, Philippians 3:7-11 & 4:11-13)

If this message was not for anyone else, it was for us. We still felt like we were in that rip current: unsure, floating, wanting to fight or flee but unable to do so. But after this, we were reminded again that although our situation did not feel good, our God is unquestionably good.

There was also an ordination service later that night for a friend of ours, at which Kane spoke. He was led to speak on Jonah and his preaching to the Ninevites. This will be important for the next blog post, but I needed to mention it here for the sake of chronology.

Savannah Doctor Day

Should you ever find yourself being referred to a high risk OB's office, here are things I would highly recommend doing:

• Designate a binder for all of your appointments.

  • They will give you pamphlets & info sheets & cardstock with information & business cards, and you're going to want these things in one place, all together, making it easy to grab for each appointment.

• Make a list of all of your questions, and keep them on your phone (or in your binder).

  • I may be driving down the road and randomly think of a question to ask my doctor, so I kept these things in a notepad on my phone. Any question - whether you think it is irrelevant or miniscule - needs to be answered. It may not be so irrelevant to your team.

So we made our way to Savannah, binder & questions in tow. Should you ever find yourself at a high risk OB's office, or even specifically the one in Savannah, GA, after a global pandemic, here are some things you need to know:

• There is a Husband Hallway. ONLY the patient is allowed in the waiting room right now, so there is literally a hallway lined with little Xs for husbands to stand and wait until their wives are called back and they may enter.

• Your office visits will take upwards of two hours, and this may or may not include wait time to be seen. This honestly did not bother me that badly. No one ever thinks they will wind up at a High Risk office, so the shock and the questions that moms must have deserve to be answered without their feeling rushed.

• You will see all kinds of kinds at the High Risk office. Some of the women that I saw were in great shape. Personally, I think I am in great shape. Some women are having multiples; some women are there for obvious health concerns. Be mindful that you never know what is going on in others' lives.

I went in and filled out all of the necessary paperwork and waited an hour before being seen. We were then taken back by a very sweet sonographer named Brandi (shoutout) who would hopefully give us some clarity.

"So explain to me what you were told about being here today."

"We were told that Ruth has a 2-vessel cord, and a suspected atrial septal defect."

"Perfect. Let's get started then!" She began the very long process of scoping out all the usual things we had already seen in my normal OB office: two bones in her forearm, normal legs, no cleft palate or lip. Then we just kind of stared at the screen and let Brandi do her job. She was quiet for a while, and then said, "It seems her stomach is on the opposite side of her body..."

She did a little more imaging and then found something else. "I'm going to have to ask the doctor's opinion about this, too... I believe she has echogenic bowel, but that can vary based on what a doctor believes is echogenic." Apparently, bowels & other organs are supposed to appear grey on a sonogram, but are deemed echogenic when they appear the same brightness as hard bone.

She then went on to Ruth's heart, and then went to get the doctor so he could see it pump in real time. Dr. Baker, one of the doctors at this office (all of whom are incredible), came in to meet with us. After exchanging pleasantries, he discussed some things with Brandi in hushed medical jargon and then explained some things to us.

Ruth does have a 2-vessel cord, better known as a single umbilical artery; she does have her stomach on the right side of her body, whereas it is normally on the left; she does have echogenic bowel; but she does not have atrial septal defect. She has a complete atrioventricular (AV) canal defect, which is worse, because it not only impacts the atria, but the ventricles, as well.

My husband and I then followed Dr. Baker into an office where the staff geneticist, Sabrina (LOVE her), had been waiting for the three of us. Dr. Baker and Sabrina answered my entire list of questions that I had prepared for the day, and never once seemed upset or frustrated that I was taking so much of their time; I was on hour 3.5 of the appointment by now. Dr. Baker explained more of what each individual birth difference meant, and what they could possibly mean when combined.

[I specifically appreciated his use of the phrase birth difference, rather than defect. That was a very kind choice of word, and something I had never considered being important until it was about my kid.]

He explained that, individually, the echogenic bowel, the single umbilical artery, and the stomach displacement were not dangerous, but the heart was. Just based on Ruth's heart, it would not be safe for me to deliver in Jesup. I needed to continue care in Savannah, and they needed to schedule me in to Savannah Children's Heart for a fetal echocardiogram to get more answers about Ruth's AV Canal.

"We are looking at a surgery at some point," he explained.

"Okay, are we thinking when she gets around school age?" I asked.

"I would say weeks or months old, but not hours."

As I've gotten older, I have learned that I handle difficult situations differently now. At one time, I probably would have felt my brain bleeding out of my ears upon hearing that my daughter, who is still in the womb, needed a heart surgery that young. Now, however, I just wrote down what he said in my binder and would just process it later. I needed reasons, not reactions.

"So, like, are these things all connected or what is... Why is this happening? I asked the other day if this was indicative of something chromosomal and they said no??" I asked.

Dr. Baker & Sabrina looked at each other. Dr. Baker explained that he felt very strongly that we should do some deeper genetic testing, specifically amniocentesis, to rule out bigger, well-known syndromes. Apparently, AV Canals and echogenic bowels are very common for kids with Down's Syndrome.

"But, I did the tetra screening at my regular doctor's office and it came back very low/no chance for Down's Syndrome," I told them.

Sabrina then explained that, on a good day, those tests are about 80% correct, and that those labs have margin for error. (I'm sorry, WHAT?!) Amniocentesis is much more in-depth and invasive, but much more accurate.

"IF we do the amniocentesis, is it for us to have a plan of action for Ruth's care, or is it just for me to know what is going on with her?" I asked. Because guys, honestly, if it was just for me to know, I would not have done it. What would it change about my love for my daughter if it was just for me to have a title for her birth differences?

But specifically because of all of those birth differences, the amniocentesis would provide doctors and specialists with the genetic information necessary to put together a care plan for Ruth. So we agreed to the test, and we were put in another room for our amniocentesis.

If you've never had the pleasure, amniocentesis is a neat thing to watch. I would not recommend it unless it is absolutely necessary, though. Brandi (remember her?) pulled up the sonogram again to guide Dr. Baker through this procedure. It is crazy to note that this is the ONLY time that Ruth has EVER been completely still for a sonogram. Brandi even mentioned that she was worried about Ruth and this procedure because she was so active beforehand, but Ruth stayed perfectly still with her hands folded for the duration of the test. Dr. Baker took a very thin needle, probably the equivalent of an acupuncture needle, and inserted it into my belly to collect amniotic fluid. I could see the needle on the screen, and it was far away from sweet Ruth. He collected three (good-sized) vials of fluid, and removed the needle. It did not hurt, and they do not even give you a band-aid because the needle is so small.

Why three vials of fluid? Sabrina was in the room with us, and she explained that amniocentesis happens in three parts, so they needed three vials of fluid. This test would study Ruth's chromosomes and genes like a book.

1. Part 1: Check to make sure all of the book's chapters are there. This part of the test would go through her chromosomes and make sure they were all present and paired correctly. We would have results back within 72 hours. If her results came back negative for any abnormalities, they would then begin the next part of testing now.

2. Part 2: Check to make sure all of the book's pages are there. This part of the test would go through her larger gene sequences and make sure they were all present. We would have these results back within 10 days. If her results came back negative for any abnormalities, they would begin the next part of testing now.

3. Part 3: Check to make sure all of the book's words are spelled correctly. This part of the test is the most incredible to me. They take Ruth's entire genetic code, and make sure that each individual gene is correctly aligned with its correct partner to make up DNA. We would not have these results back for TWO MONTHS. That's a lot of genes.

But first, we just needed to wait on results from part one.

And I needed to process and decompress what we had just learned. We had been at the doctor's office for 5 hours at this point, maybe longer. This was a lot to take in. This was a major shift to our future. We learned a lot, but we still were in the dark. It was a long day, and we still had a long ride home.

I needed donuts.

As we pulled away from the Krispy Kreme drive-thru, I told my husband that, if I felt like I was in a rip current before, I felt like I had just been hit by a tidal wave. That dangerous, yet gentle, rip current that had allowed me to float right along ended, and I was sucked under and tossed up and flipped around by a massive wave. I had tried to stand up, but I couldn't find footing. When I could come up for air, I got knocked back down by another wave. I had no bearings. I had no answers. I was treading water when I wasn't completely submerged.

But if there was one buoy in that ocean onto which I could hold, it was that God is allowing this circumstance to unfold for His glory.