Let me start by introducing Stephanie, Emma Grace and Lennon’s nurse who will be with them through this whole process as a coordinator. She basically tells us where we need to be and when we need to be there, and we are grateful for her…she is AWESOME! So if you hear me reference ‘Stephanie’ you know who I’m talking about.
Here’s the run down of the week.
Travel Day – Tuesday, May 14th
We loaded the Jeep, packed our favorite road snacks, and left Stockton, Alabama around 10:30am and checked into our hotel around 8pm. We took our time and made several stops to stretch our legs. We listened to Crime Junkie while EG and I drove, and Tyler listened to one of his podcasts when he drove. Not sure what it’s called, but I did laugh a few times. I will say, Jeep Wranglers were NOT made for traveling long distance, BUT you can park them ANYWHERE!!
Day 1 – Wednesday, May 15th
Emma Grace had appointments consistently scheduled from 8am – 3pm, therefore, we arrived at the hospital very early in fear that we may be late and it would effect all other appointments that day. The fetal MRI was first on the itinerary at 8am, so we arrived at 7:22am. Well, as luck would have it, the MRI tech ran late for work, and did not arrive until 9am. The MRI took about 1 1/2 hours, and Lennon was awake and very active during the whole thing. She likes to do the exact opposite of what she is suppose to do…a lot like her momma! LOL!
Next was the 11am RAD Ultrasound. There were two techs in the room, and boy did they set the tone for the next 24 hours, and not in a good way! First, they took it upon themselves to change the new due date that was given by the UAB specialist back to the old due date. When the correct, new due date, is on every other image and report, and the old due date on the ultrasound, you can see where that might cause confusion. That small change could have been the difference between EG being a candidate, and not being a candidate, so you see the issue here! They also talked to each other so we could hear, then proceed to inform us that UAB got it wrong and the opening is not is the sacral region, but rather in the lumbar region. That is not information that an ultrasound tech should flippantly throw around without confirmation from an actual doctor. This was the first time I’ve seen EG’s inner momma-bear come out. She was mad and in true “karen-style” she filed a complaint with their manager. **and the crowd goes wild** I would like to add that Lennon slept through the whole ultrasound…see my comment above about her doing the opposite of what she is supposed to do. LOL!
Next comes the 1pm fetal echo with the sweetest, most professional tech we experienced! I cannot remember her name…but she was awesome! The cardiologist actually came in after the scan to give us the results, which was huge for us! She explained that they do an echo to make sure Lennon’s heart is healthy and that there’s not any issues that might disqualify her from surgery. The cardiologist cleared her and said her heart looks GREAT!
The social worker met with us at 2pm, and she gave us a lot of helpful information on our stay in Houston. We applied for Ronald McDonald housing as well as housing with a local church organization, but they do not have vacancy at this time. She also evaluated EG to make sure she was ready for surgery and the stress that comes a long with it.
We were supposed to meet with the neurosurgeon after the social work consult, but he was in surgery, so we were released. He scheduled a video call for 4:30pm, but it never happened. Come to find out, it was because of the confusion on the due date, thanks to the ultrasound techs. {insert angry growl here}
Day 2 – Thursday, May 16th
We arrive at the hospital at 10am and we still don’t know if EG and Lennon are candidates for the surgery. Our appointment was rescheduled for noon because Stephanie had to call UAB and confirm the new due date of 9/6/24 before the neurosurgeon could talk to us.
So this is how our 2nd day went:
During our 2 hour delay, Stephanie put us in a private waiting room to hang out until the doc came in. EG and I took a walk around the hospital and visited 2 of the gift shops. On our way back to our waiting room, EG decided to check her MYCHART to see if the appointment was still scheduled for noon, but what she found were the results from her scans from the previous day. It was very hard to read because it was much worse than what we were told at UAB.
Diagnosis: Open neural tube defect from L4 through sacrum. There is an overlying myelomeningocele sac containing the tethered neural placode along with Chiari II malformation, with mild unilateral lateral ventriculomegaly and hindbrain herniation. Question hypoplasia of the corpus callosum. No significant motion of the lower extremities is present on this examination. No evidence of clubbing. Question mild subjective volume loss of the lower extremities bilaterally. There is no hydronephrosis.
12:00pm – We meet with the Maternal Fetal Medicine Doctor who will be in the surgery. She was extremely informative and took a lot of time with Emma Grace and Tyler to ensure they understood everything that had been explained and she answered their questions.
1:00pm – Genetic Counseling – She went over neural tube defects and asked about family history.
3:00pm – Neurosurgeon meeting – He covered everything we had already read on EG’s chart, and explained a little more about Lennon’s legs. He stated that they saw no leg movement on the MRI nor the ultrasound. He did not seem too hopeful for a positive outcome with mobility, yet he said the surgery would give a 50% chance that Lennon will not have to have a shunt after birth. Those are not very good odds. Emma Grace explained to the doctor that they had an ultrasound 2 weeks ago and her OBGYN was very proud of the leg movement that he saw. This made the neurosurgeon pause. He had EG get another ultrasound specifically on the legs. Lennon made us laugh…she was indeed bending at the hip and knee but not the ankle or below the ankle. BUT…we laughed because she reached her hand up, grabbed her toes and wiggled her foot with her hand. LOL!!! It’s like she was saying, “see! i can do it!”
That ultrasound did give us hope, but it still gave EG and Tyler a big decision to make. They decided that if the surgery can give Lennon even a 1% chance at a better life, they wanted to do it. I watched Emma Grace and Tyler leave the hospital walking as if there was actually extra weight pressing down on their shoulders.
Day 3 – Friday, May 17th
We checked MYCHART on Friday morning and saw that they scheduled EG for surgery on Tuesday, May 21.
2:00pm – Anesthesia Consult – the anesthesiologist met with us and explained her part of the surgery as well as recovery and pain management for the rest of the week. She was very informative and yet another amazing experience at Texas Children’s Hospital.
Day 4 – Saturday, May 18th
Saturday was for Emma Grace. She will not have much of a summer, so we did summer in one day! LOL!
Day 5 – Sunday, May 19th
EG went in this morning to get her first Betamethasone shot. She will get another one tomorrow. This shot speeds up Lennon’s lung development just in case she decides to make an early appearance. Other than that, today was a much needed day of rest and hydration for EG. I washed clothes and picked up a few things at the grocery store and tried to make a few extended plans for next few weeks.
Next Week
~ Monday – Pre-Op appointments.
~ Tuesday – Surgery
~ EG will be in the hospital 4-5 days after surgery.
~ When she is discharged, we will stay in an Airbnb near the hospital for 2-3 weeks so she can be observed closely and go in for regular ultrasounds. They will be check for several different things on the ultrasounds. They will check EG to make sure she looks good and that there’s no membrane separation. If that happens she will be admitted and on bed rest until Lennon’s due date. They will also check on Lennon’s progression. There should be quick improvement with the hindbrain herniation. They will also continue to monitor her leg movement.
