Indie’s Journey with Spina Bifida

07/07/2024

Hi friends and family! Indie will be 9 months old in just one week. She’s doing really well! Some things she loves are avocados, bananas, mashed potato’s, sweet potato’s, pears, her daddy and sissy! We think her favorite color is yellow because she gravitates towards the color yellow 🌟💛☀️ she says mama when she’s upset and dada when she’s happy lol

Her mobility shows progress over the months! There are some impairment/weakness in her feet and ankles so her PT says she will be fitted for AFO’s (ankle foot orthosis) soon to help give her that support she needs to crawl and hopefully walk! Growing up so fast🥹 Physical therapy is hard for babies and she’s been such a good sport through it all even when it’s hard for her.

Again, thank you all for following and taking time out of your day to see how our sweet Indie Reese is doing 💗✨

15/05/2024

Indie Reese is 7 months today and is thriving! It is a blessing to come to her page and say that she is growing and progressing right along. I always tell people that if only I could give myself a hug 7+ months ago and see a preview of what her first months of development would be like, I would because of how anxious and worried I was of the future at that point. I know now that no matter the storm we may weather together I know she will be okay 🤍
I continue to work with her on activities and things her PT has showed me over time to help build strong legs and muscles to help meet her milestones. Miss Indie is rolling, sitting up with just a little support, lifting her head and chest up with straight arms while in tummy time position and kicks like she wants to crawl. She is always smiling and laughing, she loves to eat, and loves to play!! I pray everyday God puts her hands around her and continues to bless her and us with the happy healthy baby that she is! We thank everyone so much for following her story of her arrival into the world, and beyond. It has brought mom and dad so much comfort to know we have you all supporting us and praying for our sweet baby girl to continue to thrive throughout all of her life🫶🏼

01/02/2024

❤️ we see SB clinic for the first time this month! She will have urodynamics testing done to see if she’s emptying her bladder fully. Prayers it goes well! Her sweet physical therapist from First Steps came to play yesterday!

23/01/2024

Hi everyone! Indie is 3 months now and as you can see she is growing and thriving! Our home is full of love with her in it ❤️

Indie has her first appointment with the Spina Bifida clinic next month where she'll receive attentive care from specialists, including a urologist, orthopedic, neurologist, and experts in physical and occupational therapy.

Indie is very alert cooing, laughing and smiling, reaching for and grabbing onto toys, and is doing great learning how to hold her head up on her own!

We are so thankful to have our beautiful baby girl and will do everything needed to give her the most fulfilling life. We thank God everyday for her and the things she’s able to do that we didn’t think she would be able to do. Thank you all for following our journey!

15/12/2023

Indie's most recent surgery for a VP shunt on November 6th was a big success! Her neurosurgeon was amazed by her progress during her 6-week post-op check on Tuesday! Her shunt is working properly and draining CSF and her ventricles are stable and the size they need to be.

Since our last update we have some amazing news to share! We had maintained a bladder diary for Indie for a couple weeks after leaving the NICU, taking down weights of wet diapers she had on her own versus how much residual we would get out when we would have to cath her every 6 hours. The urologist confirmed that Indie's bladder is functioning as it should, and didn’t see a reason for us to continue cathing her! God is so good! Although as she gets older that could change, we are praying and believing that she will not have to do that again. 🙏🏼
Her back incision is almost completely healed, and we have been able to give her full bathes and can finally let her sleep on her back! The night she got her first real bath, she slept on her back and slept for 6 hours straight! She is officially bandage free, and has been able to finally wear all the cute outfits mama and sissy pick out for her.

Next month, we’ll make her first visit up to the Spina Bifida clinic in St. Louis where she'll receive specialized care from orthopedic, urology, and neurology doctors to help keep her on track with her milestones. She has had an at home therapist that comes by once a month to check in on her progress and milestones. She has been doing amazing and is on track exactly where she should be!☺️

It’s been so amazing to see our baby girl thriving at home. She is growing so much! She is full of smiles and chatter and we love her so much. Her life has not been easy by any measure, but the joy she brings to our family couldn’t ever be replaced.

Thank you all so much for supporting our family. Your prayers, kind words of encouragement, meals, donations, gifts, and so much more have truly helped keep us strong and pushing forward.

Indie Strong 🎗️

04/11/2023

We wanted to take a moment to update and share with you the journey our family has been on over the past few weeks as we welcomed Indie into the world and brought her home for the first time.

Back on October 23rd, after a quick head ultrasound and a 2 hour carseat test, we got discharged from the NICU! It was a whirlwind of emotions finally being able to bring her home after we were prepped for a much longer stay. Needless to say, God is Good and we were so happy to let her come home where she has been thriving and is in total control of the house.

With us being home, we have had to continue to do straight caths every 6 hours to make sure Indie is not retaining fluids in her bladder, as this can cause infections and be dangerous to other vital organs like her kidneys developing. We have been weighing diapers and logging everything for her Urology team to look over, and have been praying that they will soon tell us that it’s no longer needed. For now, we’ll continue to do what is necessary to ensure she’s as healthy as she can be. Thankfully, it doesn’t seem to bother her, and she tolerates it well when it has to be done.

The last few weeks have been all about finding our footing and establishing a new routine that accommodates the needs of both our children, and fitting in a little self care where necessary. It certainly hasn't been without its challenges, but we've discovered that the key lies in a lot of patience, flexibility, and a whole lot of teamwork.

Fast forward to this past Monday, Indie had her follow up appt at the Pediatric Neurology office. She is eating well and gaining weight which are great things to see. When they sent us home the previous week, her ventricles had been stable for a few days and they hadn’t seen much growth in the circumference of her head so that was a big part of their decision to allow us to go home. Her head circumference had gotten a little bigger than the previous measurements they had taken, but seemed to be in line with the trend of how she was naturally growing and gaining weight so they were not concerned. We left and started to head home, and her Neurosurgeon called me and asked if we would possibly be able to come back for a head ultrasound just so they could get a good look before they sent us home for a couple more weeks. After the ultrasound, they informed us that her ventricles had slightly enlarged from the previous scan, and that she would need to have 1 of 2 procedures done within a week or so.

Procedure 1 is how they have treated Hydrocephalus for years and that is with a VP Shunt. Procedure 2 is a newer treatment, ETV+CPC, that is currently being researched but has shown to be effective and also would prevent her from needing a shunt. We consented for them to wipe her personal information from her MRI scans and allow them to send them off to a panel of 17 neurosurgeons across the country and they were given 12 hours to decide which operation they thought would be best for her. 8 said she would be a good candidate for either, 7 said she should only have a shunt put in due to the size of her ventricles, and 2 did not respond in the given timeframe. Given this information and praying about it led us to move forward with the shunt.

They scheduled the operation for Monday the 6th so we will be traveling back to St. Louis tomorrow to be prepared by early morning.
We’ve been praying hard about this and are trying to leave it in God’s hands.

We want to express our heartfelt gratitude to everyone who has prayed for us, offered words of encouragement, donated things like money, home-cooked meals, Door Dash/UberEats Gift cards, and endless support. All the love has made this journey all the more beautiful. We look forward to sharing more of our little girls journey and thank you all for being a part of it.

20/10/2023

This is Chelsea Elam, one of Maddison’s sisters. As many of you may already know, my little sister Maddison and brother-in-law Triston were overjoyed to welcome their beautiful daughter, Indie Reece, into the world on October 14, 2023. However, Indie’s journey began with a challenging diagnosis of a severe form of spina bifida called Myelomeningocele. This condition, an open neural tube defect, occurred during the early stages of her development, resulting in an incomplete formation of her spine and spinal cord, leaving a portion exposed in a fluid-filled sac through an opening in her lower spine.

This diagnosis has brought about numerous challenges, both emotionally and financially. The need for extensive medical care and weekly checkups has required them to travel to St. Louis from Branson, incurring significant expenses for their family. As they navigate this difficult journey, many of you have expressed a desire to help in a tangible way.

After careful consideration, we have decided that the most accessible and impactful way for friends, family, and well-wishers to assist at this time is by contributing to our GoFundMe. Your support will be invaluable in ensuring that Indie receives the care and support she needs as she grows and matures. Any contribution, big or small, will make a meaningful difference in Indie’s life and alleviate the financial burdens that come with her condition.

We thank god daily and are deeply grateful for your kindness, generosity, and support as we rally together to provide Indie with the best possible future. Thank you for being part of this journey with us.

As many of you may already know, my little sister Maddison and brother-in-law Triston … Chelsea Elam needs your support for Indie’s Journey with Spina Bifida

20/10/2023

Indie Reese Shofner💖 blessed us with her appearance Saturday morning at 4:49am. 6 lbs 8oz. 19 1/4 inches long! She is doing great and everybody that has cared for her just adores her.
At 5:30am, very shortly after birth, daddy walked her across the sky bridge with her Neonatal team from Barnes-Jewish Hospital to the St Louis Children’s Hospital NICU to be looked over and make sure she was healthy and strong enough for surgery.
She had a sac on the outside of her lower back, in the lumbar sacral region of the spine. The sac consisting of fluid comes through an opening in the baby's back. Part of the spinal cord and nerves are in this sac and are at high risk for being damaged.
She was looked over by the Neurosurgery team, Neurology, Urology, Maternal Fetal Medicine doctors, Orthopedics and the Anesthesiology team before they took her back.

At 11am they were taking her back to the OR for surgery to repair it. Doing the surgery early helps to minimize the risk of infection associated with the exposed nerves/meninges. It also helps protect the spinal cord from more trauma, and the goal is to preserve the function that she had prior to surgery.
It took about 3 1/2 hours and she was rolled back into her NICU room at 2:40pm. She was very alert and active which was great to see post op.

The evening after surgery mama got to finally come over to the NICU to give her her first bath and got some time to love on her bedside.
Sunday morning, they felt like she was ready to eat and she was able to have her first breast feeding session with mama. This was great because before surgery, they told us that sometimes babies will not want to eat for several days after surgery.

Since surgery she has had follow ups almost every day with her team of doctors. They’ve had head ultrasounds, a head MRI, and hearing tests done on both ears. They did an ultrasound on her heart which everything looked good and like it should. We are thankful and have praised the Lord for answering so many of our prayers.

With myelomeningocele babies, something they closely monitor is excess fluid build up in the ventricles (fluid filled spaces of the brain). The enlarged ventricles are initially how her diagnosis was found during an anatomy ultrasound. As of now her ventricles have been stable the past couple days so they are closely watching to see if there is any excess build up. She has another head ultrasound scheduled for Monday which will really help predict the direction they take moving forward and whether or not she will require a Ventriculoperitoneal (VP) shunt placed in her brain which helps redirect the fluid to drain into her stomach. We are praying big prayers that she will continue to do well and that the fluid will begin to redirect on its own and that she does not require a shunt. Statistically, 80% of myelomeningocele babies require a VP shunt some time after birth. We are praying for Gods favor on this.

Another common thing for babies with this diagnosis is fluid retention in the bladder and stool. She has shown that she has no problem letting her stool out whenever she wants, more so whenever she’s not happy. She has done well wetting diapers on her own, however the amount she’s letting out is not where they would like to see. Up until Thursday she was being straight cathed every 3 hours to measure how much she was retaining. They recently moved it to once every 6 hours, making it much more comfortable for her. They told us that as she begins intaking more liquids, sometimes they will see more fluid being retained in the bladder. So far she has been having wet diapers on her own, but we are praying that the residuals in her bladder become less and less and that she is able to release an amount on her own that’s comparable to what she’s intaking. If she’s not able to do this, catheterization at home will be something we have to do.

She is healing so well from her surgery that the Pediatric neurosurgeon was ready to send us home and said they’re ready to see her by outpatient to monitor the fluid that’s in her brain. Unfortunately, they don’t get to make that call quite yet, but it gives us peace of mind that they are so pleased with the way she is recovering. We are officially 6 days post op and she’s eating, sleeping, pooping, crying… just doing normal baby things and doesn’t seem to be in any pain or discomfort which helps put our hearts at ease.

The Orthopedic surgeon said her hips, knees, and feet look stable and that she shouldn’t require any additional surgeries. These are also prayers answered. We have had many long days and sleepless nights hoping and praying for the best outcome for our baby girl. We were told she might not have any mobility in her hips, knees, and ankles. However, following her check ups, they reported that her hips, knees, and ankles are stable and she is able to move them around on her own! She uses them every chance she gets to move her little legs around.

We are headed in the right direction now and can’t wait for the day we are able to bring our girl home to the rest of our family.

Indie Reese is a fighter and has been through so much in just 6 short days. We love her so much and ask you all to continue praying with us for healing and Gods hand in her life. 🙏🏻🤍🎗️