Sept 26, 2020
The last few weeks have been quite the rollercoaster ride. At 17 weeks, Clayton and I found out that we are having a baby🎀💕GIRL💕🎀 and we are beyond excited!!!!! Shortly after this, we got some pretty earth-shattering news at my 19 week anatomy ultrasound. We were told that it seems as though baby girl has a neural tube defect, called Spina Bifida. There are several different types. She has the more severe type— myelomeningocele, which means her spinal column did not fuse together very early in pregnancy.The defect that was found at the base of her spine is an outpouching that is filled with nerves that control her bladder, bowel function and possibly legs. There were some abnormal brain findings as well that go along with Spina Bifida: her head is lemon shaped, her cerebellum is banana shaped and beginning to herniate. The concern about her brain findings is potential development of obstructive hydrocephalus.It’s honestly been the longest week of our lives and we have just felt numb—trying to process the information we’ve been given. We are sad because our hopes and expectations for her life have been flipped upside down and we don’t really know what to expect.The 2 basic options we’ve been presented with are: surgery shortly after she’s born to correct the defect, or in-utero surgery to correct the defect. The surgery which occurs while she’s in the womb must be done between 19-25 weeks gestation. This would occur within the next month because I’m 20 weeks 4 days now. Outcomes appear to be more promising if we were to qualify for the in-utero surgery. It seems there is a better chance that she won’t develop hydrocephalus or need a VP shunt if the defect is corrected while she is in the womb.Though we’re overwhelmed, we are so thankful that she has life! We plan to joyfully celebrate her the rest of this pregnancy. We’ve decided on her name—Mabry Claire Miller 💕. We believe wholeheartedly that God is GOOD and that she is a gift directly from Him. We know that she is God’s masterpiece and that she has been given a special mission in this life—which He has prepared in advance for her, before she is even born.We are clinging to the Lord’s promise that He works ALL things together for the good of those who love him. Our Heavenly Father loves Mabry more than we ever could and He is up to something extra special with her life. We are trusting that He has amazing plans for her. What a blessing she is already! Please join us in fervently praying for our sweet girl.We’ve created this group to share our journey with y’all; we’ll post updates, prayer requests etc. as they come. We appreciate each and every encouraging word, act of kindness, and prayer sent. They mean more to Clayton and I than y’all will ever know. #mabrysmission
October 13, 2020
We’re 23 weeks today. Clayton and I are back from Philly with lots of news. It was several of the longest few days we’ve ever experienced. We are glad to have some answers though. Unfortunately, it turns out Mabry’s defect is a little worse than we originally thought. Her defect begins at the lumbar spine (specifically L3) rather than sacral area. This was disheartening for us to hear and generally means there will be some lower leg problems plus the same bowel/bladder problems as previously thought. It is impossible to know the extent of the motor problems until after she is born but the neurosurgeon, Dr. Heuer, thinks she will definitely require some ankle braces/ some type of support with walking. We learned that she has club feet and that there was minimal movement at her ankles on ultrasound. There is definitely evidence of hindbrain herniation on the MRI. The good news, however, is that Mabry’s ventricles are still measuring normal so there is still a great chance she won’t need a VP shunt within the first year of life. They anticipate her chance of needing a VP shunt is around 20-40% after undergoing fetal surgery. This is incredible! Most children with Spina bifida are not candidates for the fetal surgery and end up needing a shunt placed (85% of children) after the traditional postnatal surgical correction. With shunt placement, there is potential for many complications which we are praying Mabry will not have to endure. With all of this being said, we ARE definitely a candidate to have the prenatal surgery to modify Mabry’s defect and we have a surgery date. This in itself is such an answered prayer! Surgery will be next week on Wednesday, October 21st. I’ll be 24 weeks 1 day then. The CHOP Spina Bifida team is INCREDIBLE, and we have no doubt we are in the best human hands possible. Clayton and I are feeling at peace about moving forward with this surgery. Attaching a video for those who want to see it about the procedure they’ll be doing. It’s really helped us. https://youtu.be/wRMcxRHr7Go
We will be traveling to Philadelphia this Sunday. I will have a pre-operative screening on Tuesday before surgery including COVID test, EKG, CXR, basic labs, etc. Wednesday morning —Mabry and I will have our surgery, it takes approximately 70 minutes under general anesthesia. I will recover for roughly 4 days in the hospital afterwards. Clayton will be with me the entire time. No other visitors are allowed due to COVID restrictions. From there, we will be discharged home. Not sure where home will be just yet- but within 30 minutes of the hospital in downtown Philly. This is because after a pregnant patient has undergone fetal surgery, they must relocate to within 30 minutes of CHOPs delivery center and stay for the remainder of the pregnancy. I’ll be wheelchair bound, on bedrest for a minimum of 1 month after surgery. After 1 month, I will be on modified bedrest and will be able to get up and walk for short intervals (no longer than 15 minutes at a time for the remainder of her pregnancy). Im required to have a 24 hour support person to assist with activities of daily living for the duration of the pregnancy. This will be my momma, as sweet Clayton will be holding down the fort in Augusta and will need to continue to work to support us. He will be traveling to and from Philly as much as he can to visit throughout the rest of pregnancy. This is one of the hardest things about this for me.I’ll be closely monitored and undergo scanning weekly from the time of surgery until delivery. Mabry will be born in CHOPs special delivery unit then immediately transferred down to the Neonatal Intensive Care Unit for a few weeks. We have a new due date also. The team won’t let moms and babies in this situation stay pregnant beyond 37 weeks. Lord willing we stay pregnant that long— our due date will be January 19, 2021. Oftentimes however, babies who have this prenatal surgery are born earlier. The average being around 34-35 weeks (roughly December 29, 2020). It is rare that babies are born before 30 weeks after this surgery, but it is certainly a risk.Please keep our sweet Mabry in your prayers. We are asking for prayer for safe travels to Philadelphia, for both Clayton and my COVID tests to be negative so we can have the surgery. For the medical team at CHOP. For a textbook surgical procedure free of complications that restores her lumbar and sacral spine and nerves. For full reversal of her hindbrain herniation. We are praying there is no premature labor or early membrane separation. That Mabry’s life would Glorify God and touch others in a tangible way that bring people to know Jesus. That Mabry’s quality of life will better because of this surgery. Thank you again from the bottom of our hearts for your love, generosity and kind words. We are overwhelmed by them and feel so blessed to be covered in prayer by so many. Your prayers have been powerfully felt. When I am afraid, I put my trust in you. Psalm 56:3Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; He will never leave you nor forsake you.”Deuteronomy 31: 6-8
October 15, 2020
We wanted to personally thank every single one of you for the outpour of love for Emily, Clayton, & Mabry. It is so encouraging to know we have such a faithful tribe behind us. Thank you for loving on our family and praying over them. We know this is in God’s hands and rest easy knowing He is with us every step of the way. A lot of you have asked how to help with the upcoming expenses. We have created a platform to easily make donations for Mabry, if that is what you feel called to do. Clayton & Emily have emphasized that they do not expect any assistance financially. Catherine and I decided to set this up on their behalf. Please do not feel obligated at all. Your constant prayers are truly more than we could ask for. Below is the link:
*Like most online giving platforms, there is a transaction fee, but we chose this platform because it has one of the lowest. We have opted to include the transaction fee so that 100% of funds go directly to Mabry!
**You will also be prompted to "add a tip" to the platform on the final details page. You can bypass this by clicking the drop down button to "other" and type in $0.00.
If you have any issues or questions using the platform, please reach out to me directly. Thank you all! -Lauren Goldman