My guest today is Carrie Holt. Carrie is one of those people who, when you talk to her, you feel like you’ve known her your whole life AND it feels like you’re there in the room with her.  She has such a great perspective on having a child with a diagnosis and special needs, and she also hosts a podcast called Take Heart Special Mom.  I’ll be sharing a bit about what I’m grateful for this Thanksgiving week, and then we will jump into Carrie’s story.

In this episode, we talk about…

[1:24] What I am grateful for

It’s the week of Thanksgiving, and I wanted to share a little bit about myself. I have so many families that are vulnerable and open up on this podcast, and I want to do that as well. Last week we had the episode about gratitude journaling, so I thought I would share three things I’m grateful for – with the caveat that I am eternally grateful for the people who share their stories on this podcast and for everybody who listens.

The first thing I’m grateful for is my dad. He and I have always been very similar, with the same sense of humor. We like to burp really loud, make jokes, and have fun. We’re a little messy. He has always been someone who puts his family first. I grew up in Dallas, TX, and went to Penn State University. One time when I was about to board a flight back to college, there was another plane crash that happened. I already get anxious on flights, and this was just too much. My dad got in the car and drove me 24 hours to Penn – and then drove the 24 hours back home. It always hits me, even so many years later, what a selfless act that was. There was no questioning, and no guilt. He’s just the best guy. Over the past few months, I’ve gotten to work with him more closely as I’m building Child Life on Call. I’m so grateful for this time with him.

Second, I’m so grateful for my Instagram friends. I’ve never met them in person, but we stay in touch through comments and DMs and I’m really thankful for the community we have built.

Lastly, I am thankful for alone time. I feel so clear and level-headed after I spend a little time alone, and I’m always grateful for those opportunities.

[4:07] About Carrie Holt

Carrie has been married to her husband for 21 years, and they have four children: three boys, ages 18, 16, and 14, and one girl, age 11. She and her family live near Columbus, OH.

[5:16] Getting diagnoses of spina bifida and hydrocephalus

When Carrie was 20 weeks pregnant with her third son, she had a three-year-old and an 18-month-old. She went in for her routine ultrasound, where you usually find out the sex of the baby and see that everything is okay. Her husband remembers that the tech was spending a lot of time looking around without saying anything, but Carrie says she was oblivious to this.

Afterward, they were in the waiting room before going in for her appointment with the doctor. Her husband was pacing, because OB offices tend to have long waits.  Carrie remembers telling him that normally she would say to go to work, but she felt like he needed to be there. When they called them back, the first words out of the doctor’s mouth were, “We found something wrong with the baby. We’re not sure what it is.” Originally, the doctor told them she did not think it was spina bifida but they did see hydrocephalus.  

Hydrocephalus is extra fluid in the brain, and it is almost always associated with spina bifida. Spina bifida is scientifically known as myelomeningocele which refers to a split or open spine. It occurs very early on in pregnancy when the bones don’t fuse together properly around the spinal cord. It can occur anywhere along the spinal cord, and much like a spinal cord injury it can have different impacts depending on its location. Some people can walk with ankle braces, others need braces up to their hips, and others use wheelchairs full time. Carrie’s son’s condition occurred around the lumbar region, near the lower part of the back. It affects muscles, bowel, and bladder.  

Carrie remembers that it was August 31, and calls that “D Day” for diagnosis day. It marked a clear before and after of this change in their lives, and they were devastated at the time.

[8:43] The second half of Carrie’s pregnancy after these issues were discovered

In the exam room, Carrie’s husband’s blood pressure dropped and he almost passed out. He gave her permission to share this story, where the next thing she knew he was laying on the floor and his feet were on the doctor’s shoulder. The doctor opened the door and had the nurse come get their oldest son who was there with them so he wasn’t traumatized (he says he doesn’t remember this event). 

Carrie’s doctor was able to get them into a high-risk doctor the same day for a level two ultrasound. From then on, her pregnancy was considered high risk and she began to feel disconnected because it seemed like her son was “just a diagnosis”. They hadn’t found out the sex before birth for their previous two children, and this time they found out. Carrie had an amniocentesis, confirming the medical conditions and that they were having a boy.

It would hit Carrie when people asked about her due date that she didn’t really have one anymore. She had a surgery date, because she had to have a C-section and then the same day her son would have to have surgery as well. He would have to be transported to a different hospital and they would operate to close the open area around his spine. They would also have to place a shunt for the extra fluid in his brain due to hydrocephalus. Everything felt very medical and mechanical.

At one point, they went in for a level two ultrasound and the tech informed her of the new 3D feature. That was the day that Carrie remembers finally bonding with her son. She looked at the pictures and recognized that the baby had their oldest son’s nose, and that his profile looked like their other boys. She started to connect with him as more than a diagnosis and a list of upcoming medical procedures.

[13:37] Bonding with a baby that has to have surgery right after birth

Carrie and her husband had a lot of fear over how they would handle their son’s medical condition. She had known a girl with spina bifida through church, and she knew this little girl had more surgeries than anyone else she knew. That has since been the case for Carrie’s son as well.

Carrie describes herself as a “type A planner”, so the best way she felt she could prepare for bonding with and taking care of her son was to educate herself about his condition. She read a book about spina bifida that was written by a doctor. In some ways it was great, because it prepared her for the worst-case scenario that happened after her son’s birth. She was intent on wanting to breastfeed, so she researched pumping and rented a medical grade pump. Her parents were in town to take care of their older sons when Toby was born, and her father took pictures of him in the NICU before they transported him so Carrie could look at pictures of her baby while she pumped.

She also asked at the hospital to be put on the end, away from the nursery and the other mothers. The hospital also allowed her to be released the day after she gave birth so she could be transported to see and hold Toby for a little while. Her other boys were also allowed into the NICU to see their new brother and give him pictures they had drawn for him.

[19:30] A trip to the pediatric intensive care unit

Toby was in the hospital for about 8 days after birth, and he was doing great. They took him home, and Carrie’s parents had the older boys during that transition time. When they came home, the weekend was really hard. They had to use a catheter to empty Toby’s bladder every three hours. Carrie was also trying to nurse every 2-3 hours, and she was very sleep-deprived.

They sent Carrie and her husband home with a binder of doctors to see, and it outlined signs of shock such as projectile vomiting, sleeping a lot, and the fontanel being swollen. Newborns often spit up, sleep, and cry, and you just don’t know what they need. Eleven days after Toby was discharged, Carrie noticed he was making noise when he was breathing – an issue called strider. He started projectile vomiting, and Carrie could tell he was experiencing reflux.

They took Toby to the hospital, and he was admitted because they thought he had RSV. Carrie had been a nursing student in college before switching to education, and she knew in the back of her mind that Toby has showing symptoms of Chiari malformation. Many babies with spina bifida have hydrocephalus, and they also have varying levels of this Chiari malformation in the brain.

Four days into the hospital stay, his vocal cords were paralyzed. He was aspirating and refluxing, and they placed an NG tube (nasal feeding tube). Carrie was devastated, because all she wanted to do was nurse her baby. They were trying to care for the wound on his back, and his sodium was dropping really low. He should have been having seizures. Toby ended up in the pediatric intensive care unit for 30 days. They rode a roller coaster of him being on a C-PAP mask, doing okay for a couple days, moving to oxygen on a nasal cannula, and then he would code and they would ride the roller coaster again.

In the middle of this, his shunt failed and he wasn’t able to regulate his body temperature. The doctors came in and told them that they had to talk about a trach and a feeding tube. Carrie remembers relying on their faith a lot, and thinking that they had to take this one day at a time. Sometimes, it was one minute at a time. As a planner, it was so hard for her to learn to live this way.  

Carrie would reach out to her Yahoo group of spina bifida parents and ask about her son’s situation. She read about children who needed a surgery to take skull bone out of the back of the brain, but it would grow back. They wondered if they should put their son through this. Carrie was doing a lot of research, and she realized that they had to learn this dance of research, trusting the doctors, and taking everything one day at a time.

[25:54] Coming home with a ventilator

When Toby came home, he had been in the hospital 64 days. He only weighed around 8 pounds at almost three months old, because he wasn’t able to keep weight on. He was on a ventilator 24/7, as they found out that he had obstructive sleep apnea as well as central sleep apnea. When he is in deep REM sleep, his brain doesn’t tell his body to breathe. They thought maybe he could be off the ventilator during the day, but babies sleep often and his doctors were concerned about all the viruses out there. They didn’t want him to have to work so hard to breathe. You also do all of your growing while you’re sleeping, and he was on a feeding pump 20 hours a day. He ended up with a tube in his small intestine, because they didn’t want him to reflux and aspirate on any of the breast milk or formula they were feeding him. “Some of that is just a blur,” Carrie admits. “I look back and think, how did we survive that?”

[27:54] What Carrie wishes she had known at the beginning of this journey

Looking back, Carrie wishes she would have known to embrace her baby as who he was – more than all the therapy and the diagnosis. He went through feeding therapy, physical therapy, speech therapy, occupational therapy. He learned to talk, even with a trach. Carrie would go back and tell herself to just chill and enjoy her child. Of course they had moments where they enjoyed him, but there were so many times where she was focused on “fixing” him and wanting the world to see him as a great kid who is silly and funny and loves Doritos.

Carrie would also go back and tell herself that it’s ok not to have a plan. You don’t have to know everything. You can embrace each day, and celebrate the milestones. On another podcast, Carrie heard someone call them “inchstones”. The tiny swallow of baby food, checking out at the grocery store with baby food, wearing the zip-up pajamas that he couldn’t wear when he was on a feeding tube – all those little inch stones. She would tell herself not to worry about the friend’s baby and what they are doing.  

Carrie now knows how important it is to grieve the milestones they don’t reach and the ways they don’t measure up with their peers. In the beginning, she didn’t realize how much grief was going to be an ongoing part of this journey. Toby was about five when she realized that, but Carrie now encourages families to embrace the grieving process because there is healing in lamenting the ‘hard’ of your journey.

[31:39] How Carrie’s other children have grown through this experience

Carrie admits that they probably protected their older two boys too much, meaning they took them out of the situation. They didn’t want their kids to be at the hospital all the time, but Toby has had almost 60 surgeries in 14 years. Her older boys are now 18 and 16, and they do have a good relationship with Toby. They are normal siblings who fight and argue.

They have always had in-home nursing, which allowed Carrie to balance her life and go to soccer with her older boys without Toby’s medical needs turning her sons’ lives upside down. She didn’t want them to ever resent Toby because they missed out on things due to a medical emergency or because Toby couldn’t do something. Toby is in a wheelchair full-time, so he has different physical limitations than they do. The in-home nurses helped to make her older boys’ journey easier. She didn’t bring them into his care much, and she wonders if she should have done that more.

Some of that is because she had three kids under three, and she was trying to survive. It also depends on the children’s personalities. Carrie’s second son just has a more nurturing, empathetic personality. He has no problem with doing some of the medical care that Toby is unable to do himself (despite how independent he has become over the years).  

Toby and Carrie’s daughter, Kara, have a really fun relationship. In some ways, Toby is a bit younger than his years. He likes to pretend, or watch his sister play with stuffed animals. They have a sweet friendship. They will argue, and she will mother him sometimes. Carrie notes that her daughter had to grow up  a bit faster than she would have wanted her to, but she also sees that Toby’s siblings have a tremendous amount of empathy.

They have family friends whose oldest son has a trach, ventilator, and feeding tube as well. He was born 16 hours before Carrie’s oldest son, so he is a about three-and-a-half years older than Toby. Carrie describes her oldest as having a real “type A, kind of business personality”. He’s not always super nurturing with his brother, but she sees him taking care of his friend. They have an amazing friendship, and Carrie attributes that to his brother and the journey they have been on together as a family.

[38:31] What Carrie’s son has taught her since he entered her life

Toby has taught Carrie true joy and how to embrace the ‘hard’ of life with perseverance and courage. Toby can talk and converse normally, and some of the medical issues have healed over time. He doesn’t need the ventilator when he is awake, he can eat normal meals with his family, and he has overcome so much.  Toby attacks life with courage and perseverance. He struggles and he has fears, but he always has a smile on his face and is ready to tell a joke. He is loving and affectionate, and he has taught Carrie to be grateful for every day. She knows to look for the “inchstones” in life and not be so concerned about tomorrow.

Connect with Carrie:

Website

Podcast

Instagram

Facebook

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