March 28: ANATOMY SCAN
Emma Grace went to her 18 week appointment where they do the anatomy scan of the baby. Her doctor was concerned about a few things that he saw on the scan.
- The ultrasound showed 4 markers:
- Enlarged ventricles in the brain
- Cranium small and shaped like a lemon
- Spine is curved
- 2 weeks smaller than she should be
The doc said it appeared to be chromosomal abnormalities, but not trisomy 21 (Down’s syndrome). He was leaning more toward trisomy 13 or 18, which pushed all of us down to our knees. He drew blood for a NIPT Screening and a Quad Screening. The waiting process is the worst!!!
EG was home for 2 weeks…Easter came and went while we were still trying to process the news received on Thursday. EG did not acknowledge her little bely bump in photos and it broke my heart. Before she left to go back home, she let me snap this picture, but asked me not to post on any social media because she “looks terrible”. Well…I’m posting it anyway because this is the most beautiful picture. I told her she does not look terrible, she looks like a tired and worried momma, and that is beautiful! That face is nothing but love for a child.
April 3rd: First Test Results
Even though the doc never mentioned Spina Bifida, EG was convinced that it’s Spina Bifida this whole time. She said she prayed to God for a sign that Lennon would be ok and there was a picture that came in the mail that week addressed to “Aunt CC”🤷🏼♀️ EG opened it before she saw that it wasn’t addressed to us, and with tears in her eyes she said “do you think that’s my sign!?!?” The picture was of a beautiful little girl who appeared to be around 3 or 4 years old in a wheelchair.
A few hours later we received the test results from the Quad Screening:
✅TRISOMY 21 – NEGATIVE ✅TRISOMY 18 – NEGATIVE
❌OPEN SPINA BIFIDA – POSITIVE
I guess this is what we call “mother’s intuition” 🤷🏼♀️ 😳
We celebrated the small victory against Trisomy 21 & 18 as we waited for the NIPT results to come in.
April 7th: God is Moving
This morning at church, Pastor Richie gave an alter call during praise and worship. He said he felt like there were people in the congregation that needed healing from back pain. He called people by name. he said he knew that there were others who were praying for miraculous healing of the spine. He prayed for vertebrae to close up and nerves to be mended in Jesus name. It was a very Holy time in the presence of Jehovah Rapha!
April 8th: More Test Results
We received the results from the NIPT screening, and everything was normal!! This means that the markers seen on the ultrasound are not chromosomal, so that rules out Trisomy 13!!! And we praise God again for that small victory!
April 18: UAB Maternal & Fetal Specialist Appointment
We were supposed to see Dr Brian Brocato, a Maternal & Fetal Specialist at UAB, but we actually saw Dr Cynthia Brumfield and Dr Shea (I think that was her name)….they did a high definition scan and confirmed it is in fact Spina Bifida. There’s a closed sack that can be repaired after birth or possibly intrauterine. It’s located in the Sacral Region. She has mild hydrocephalus, which is fluid on the brain, that may require a shunt after birth if she is not a candidate for intrauterine surgery. The surgery will fix that. That is normal for spina bifida. The sac that is collecting fluid on her back is cause pressure and fluid on her brain. The doc said Lennon looks great everywhere else! Her heart, kidneys, feet, etc look good! This is great news, and we praise God for every thing!!! He is so good! They did an amniocentesis and EG has been referred to Texas Children’s Hospital for a consultation for the intrauterine fetal surgery.
May 15: Houston, TX, here we come!
The evaluation at Texas Children’s Hospital can take up to 4 days. Here’s the run down of what ifs:
- If they decide she does not need the surgery, we will go home and Lennon will have surgery after delivery to close up the hole in her spine, and possibly put a shunt to drain the fluid from her brain.
- If she is a candidate for the intrauterine fetal surgery, her window for the surgery is May 17th – May 30th. The surgery takes 4-6 hours and she will stay in the hospital for 5 days. She will then have to stay in Houston, no more they 15 minutes from the hospital, for an additional 3 weeks.
Although we are still playing the waiting game, we have hope in Jesus that His plans are perfect, He forms us in His image in our mothers’ wombs, and He does not make mistakes. We are ALL fearfully and wonderfully made with His purpose and His will as the end game.
With spina bifida, we get to learn a new way of life with new adventures we’ve never been on!! Lennon will be loved and although there will be hurdles and obstacles along the way we will still praise Him and lift our hands, for God is God, no matter where we are!!! He will use Lennon for His Glory!
HIS WILL SHALL BE DONE and HE SHALL BE PRAISED!
