Meet Madison: Learning to Eat

Happy September Friends!

Because meningitis left Madison with many complex issues, it could literally take me pages to explain them all. I do however think it’s important to learn more about the things that have affected or will affect her development as she grows. That being said I hope you’ll all bear with me as I post on each complication separately. These posts may seem long, but trust me, I’m already leaving out a lot of detail lol! So, this will kick off my Meet Madison series! I hope you find her as strong & amazing as her father and I do every day!

The Diagnosis That Changed Everything

Madison Claire was born July 9, 2017 at 3:51 pm. She was 6 lbs 6oz & 19 inches of adorable. She’s looked just like her daddy since the moment she arrived (with the exception of my blue eyes!). She was born healthy & strong, until everything changed on July 20^th. That morning she woke up pretty fussy & spit up more than usual, nothing to out of the norm for a newborn though! We had plans to take her to Red Bank for a walk, but quickly realized it was just not going to happen. She fell asleep like most babies do in those early days, but when she didn’t wake to eat, we knew something was off. I breastfed Madison, and for the first 10 days of life she woke to eat like clockwork. It was strange that she didn’t seem interested in eating. She finally got up and was making this weird sound (which was later described to us as “grunting”). Within minutes her skin looked gray and the sweet little personality she had developed seemed to have vanished right out of her.

Was something wrong? How could something so serious be wrong with our brand new baby? We took her temperature axillary (under the arm) and as the thermometer started to climb above 98, our hearts sunk. We tried again rectally and got a normal temp (strange because typically rectal is more accurate). John & I called the pediatrician, telling them that despite a normal rectal temp, we KNEW something was wrong, and rushed her over. We had no idea that we wouldn’t return home until the end of September.

The next 2 weeks, 48 hours specifically, were a parent’s nightmare. Hell, they were anyone’s nightmare. We had no idea if Madison would survive. She was GBS Meningitis positive, intubated, every vital was completely out of wack, she was having seizures, and every doctor or specialist that came to see us only had bad news. You can’t imagine what it’s like to carry a life inside of you for 9 months, and a mere 2 weeks after giving birth to find yourself discussing what to do if your child won’t be able to breathe on her own – talking about the possibility of needing a DNR. The thought of going home without our baby was impossible to bear. Especially when to this day, we have no idea how she got so sick.

Meningitis affects the meninges, the membranes that surround the brain & spinal cord. GBS specifically, is actually a very common strain of bacteria and is typically harmless in adults (which is MIND BLOWING! How can something so harmless in an adult literally destroy a child’s brain? I just don’t get it- I never will). All women are tested for GBS during weeks 35-37 of pregnancy. According to the American Pregnancy Association, 25% of healthy women are found GBS positive, but the majority of babies born to these mothers will not become ill. If you’re found positive you’re given antibiotics through an IV during delivery to help prevent your baby from becoming sick. 60-70% of GBS found in babies is early onset (meaning in the first week of life).

Madison’s case was so rare and unexplained because I was GBS negative & she is considered late onset, having developed symptoms almost 2 weeks after birth. Now, it is possible to be negative at the time of testing, but for the bacteria to colonize after the fact, leaving someone positive just a few weeks later. Contracting GBS from a positive mother after the first week of life is rare. To contract it from a negative mother would be even more so. Most late onset cases are the cause of a child coming into contact with hands that could have been contaminated with the bacteria. Sadly, we’ll never know for sure how our sweet girl contracted meningitis.

John & I held close to our faith and begged God to let us keep our baby. Thankfully, our prayers were answered, and despite the odds Madison pulled through. After almost 1 month in the PICU, we were transferred to Children’s Specialized Hospital to work on PT, OT, & Speech therapy for Madison. Because her brain was so severely damaged by the meningitis Madison had to relearn to eat, relearn to simply move her arms & legs, and more. We spent another month in CSH before finally returning home.

Obstacle 1: Eating

Reteaching Madison to eat took longer than we thought it would have. For some reason I had thought, “Oh we’ll be out of here in week! She knows how to suck. Piece of cake!” I wasn’t thinking about how weak her poor body was. She received speech therapy once a day, which was gradually increased to 3x a day in the hopes of building up her strength. We had to ensure that her body understood how to suck & swallow safely. We even had to confirm that her gag reflex was intact; that her brain understood how to cough without choking if something did go down the wrong pipe.

Madison was fed by an NG tube (a nasogastric tube), which is a tiny tube that carries food or medicine to the stomach through the nose, before we had to make the painful decision on moving forward with G tube surgery. At the time, Madison was literally only taking a few millilitres of breast milk from a bottle by mouth, not nearly enough to sustain her. Her therapists, doctors, and surgeon all predicted it would take 6 months-1 year before she would be able to eat fully by mouth, if she would even get there at all. Because the NG tube is simply placed through the nose, it can easily be pulled out and needs to be replaced more frequently not something ideal for long term. It can irritate the inside of the nose, is always visible, and can also irritate the skin because it is taped to the face. A G tube (gastrostomy tube) on the other hand, is surgically inserted through the abdomen. It connects to a feed pump just like an NG tube would, but is concealable, less likely to come out, and doesn’t need to be changed as often.

Deciding to move forward with the surgery seemed like the right way to go at the time, although if I’m being honest is something I regret doing. Call it a mother’s intuition, but I just knew my girl could eat. I was certain she would be able to do it, but of course we like to trust the professionals, especially as new parents, and their advice for the best long term outcome of our children. We were warned however, that many times children wind up picking up eating more quickly once the G tube is placed, simply because they don’t have the NG tube down their throats anymore, making it more comfortable to swallow & eat on their own.

September 14^th, Madison had her G tube surgery. It was a hard day, but also nice to finally see her cute face free of tape and tubes. She slowly began to improve with her eating as we were trained in using everything that goes along with tube feeding a child. Aside from things like a brain injury, there are also other reasons a child may need to be tube fed. Issues with aspiration, not being able to gain weight, or gastro defects for example. 2 weeks later, on September 26^th, we finally took our baby girl HOME. And once that happened I was determined to never use that G tube. I was determined to get her eating by mouth, giving her the ability to eat on her own schedule, and not one determined by a hospital, and just like that- she did it. She literally took everything by mouth with no issues. We wound up never needing to use the G tube for feeding. Not once. It was a miracle.

On December 31, 2017 (that’s right New Years Eve!), while we were in the hospital for epilepsy related reasons (that’s another post), Madison’s surgeon stopped by and popped the tube right out. He was thrilled when all the nurses told him we weren’t using it- not even for meds. His perspective was, if we’re not using it, and can take it out after only a few months of having been inserted, there is less chance of infection & a great possibility of it closing right up (which it did). If something happens down the line & she needs it again, although another surgery would be involved, it would be quite simple to replace, as we know exactly where it needs to go. Maddie now has a tiny scar right in one of her belly rolls, and we kicked off the new year tube free! It was a very proud moment for us. Something people didn’t know if she’d ever be able to do, she was doing like a champ. At that point she was even eating purees. Her speech therapist had us discharged pretty early on, as Madison showed no signs of aspirating, reflux, or issues eating.

We haven’t been able to try table food yet, but more so because Madison has an issue with alertness. Her therapist has found no issues with her mouth and feels that once she’s more awake and has begun using her mouth more often, she shouldn’t have any issues with eating real food. So, for now, we hold onto to the hope that that remains true! Just like we did with her bottle & purees, we have faith in her that she will be eating table food, and self-feeding when she’s ready! If there is one thing we have learned from this girl, it is that she is totally on her own schedule. Madison takes all the time she needs, sometimes more time than we’d like, but she gets to where she needs to be in the end, and that’s all that matters. For success is a journey, & not a destination, right? 🙂

Xo,

Kelly