The Story Of Maddox Alexander: In Between, Details, and Definitions...

This post may be a bit all over the place. These are bits I left out of other posts, definitions, clarifications, and things that happened between my two visits.

In Quotes and Italics are Kelly's words:

"Along with the Spina Bifida, Maddox was born with a soft cleft palate in the roof of his mouth, a severely clubbed right foot, and a chromosomal defect (a large deletion of chromosome 2), paralysis of his lower extremities apart from the belly button and below. It is not believed that he will have any control over his bladder or bowels at this time. The chromosomal defect is so rare that there are only 10 reported cases in the United States and none of them have the same symptoms. We were told that there is a 100% chance that he will have some sort of developmental delay, but to what severity is unknown. They will be following him as a case study to see what happens.

Immediately after his surgery, the focus was on wound care and trying to get him to heal up. The neurosurgeon thought that his incision was so large that he may have needed a skin graft. A skin graft was a huge factor with how long he would remain in the hospital. Luckily Maddox was such a great healer, that this was not the case. His incision however was leaking spinal fluid. He also had hydrocephalus (fluid pooling in his brain causing pressure). On January 9th, a VP shunt was placed through his brain running down his neck and chest and into his belly. The purpose of this shunt was to relieve the pressure of the fluid from his brain, and to prevent it from leaking from his incision. This surgery proved to be very beneficial to Maddox. Prior to the shunt, he was lethargic, sleeping the majority of the day and not being very responsive to stimulation. He was a whole new baby after the surgery, much more alert and aware when his parents and nurses were around. His incision started healing much better once the fluid stopped leaking.

For the first two or three weeks, Maddox received all of his nutrition from a nasal gastric feeding tube. This tube went in through his nose and down into his stomach. On January 7th, the doctors gave the ok to try and give him a bottle. Due to his cleft palate, he needed a special feeding bottle with a haberman nipple. This soft tipped bottle, allowed the person feeding him to "squirt" the milk into his bottle and not have to have him worry about sucking. After a very scary go about with this, and him choking a few times, they felt he did well enough that he could continue to practice. If he wasn't able to master this, there was talk of him having to come home on a feeding tube."

The below information is from The Mayo Clinic website to help explain Spina Bifida to you:

Spina bifida is part of a group of birth defects called neural tube defects. The neural tube is the embryonic structure that eventually develops into the baby's brain and spinal cord and the tissues that enclose them.

Normally, the neural tube forms early in the pregnancy and closes by the 28th day after conception. In babies with spina bifida, a portion of the neural tube fails to develop or close properly, causing defects in the spinal cord and in the bones of the backbone.

There are three types of Spina Bifida, the most severe being Myelomeningocele, which is the type that Maddox has.

Also known as open spina bifida, myelomeningocele is the most severe form — and the form people usually mean when they use the term "spina bifida."

In myelomeningocele, the baby's spinal canal remains open along several vertebrae in the lower or middle back. Because of this opening, both the membranes and the spinal cord protrude at birth, forming a sac on the baby's back. In some cases, skin covers the sac. Usually, however, tissues and nerves are exposed, making the baby prone to life-threatening infections.

Neurological impairment is common, including:

Muscle weakness, sometimes involving paralysis
Bowel and bladder problems
Seizures, especially if the child requires a shunt
Orthopedic problems — such as deformed feet, uneven hips and a curved spine (scoliosis)

Maddox did not have skin covering his defect and did not have a "sac"...in other words, everything was open. Maddox was also treated for meningitis because of the way that he was born.

Doctors aren't certain what causes spina bifida. As with many other problems, it appears to result from a combination of genetic and environmental risk factors, such as a family history of neural tube defects and folic acid deficiency.

There are risk factors, but that is more detailed and I am not going to go that far, again this information came from The Mayo Clinic's page on Spina Bifida. They do say: "Most babies with spina bifida are born to parents with no known family history of the condition."

You MAY see the commercials on TV relating birth defects such as Spina Bifida to prescription medications, that can be the case (Medications are a risk factor), but was not the case for Kelly and Maddox.

Again according to The Mayo Clinic Website there are a "Range of Complications", since we are all only a few months in and generally do NOT use the internet to learn about or diagnose Maddox, I am only going to share the ones that have affected Maddox thus far. Early into this journey that we are all on I learned not to google much (plus there's not all that much info out there) becuase I didn't want to learn about Spina Bifida online, but through Maddox and WITH Kelly and Brandon. On my second trip to CT, I told Kelly that I don't look things up often (every now and then for reference/definition maybe) and that I would NEVER try and guide her or make suggestions when it came to Spina Bifida, but that I WOULD share with her ALL of my BABY knowledge because I KNOW babies and that she could choose to listen to what she wanted and disregard the rest. That's why I do not want to spew the entire internet at you in my blog...if you want to google, by all means, google. Anyway, back to the "Range of Complications" Maddox has and/or will/may be affected by according to what has happened and been said so far.

Physical and neurological problems. This may include lack of normal bowel and bladder control and partial or complete paralysis of the legs. Children and adults with this form of spina bifida might need crutches, braces or wheelchairs to help them get around, depending on the size of the opening in the spine and the care received after birth.
Accumulation of fluid in the brain (hydrocephalus). Babies born with myelomeningocele also commonly experience accumulation of fluid in the brain, a condition known as hydrocephalus. Most babies with myelomeningocele will need a ventricular shunt — a surgically placed tube that allows fluid in the brain to drain as needed into the abdomen. This tube might be placed just after birth, during the surgery to close the sac on the lower back, or later as fluid accumulates.

The ONLY other bits and pieces I have to add to this are that after I came home, I text every few days to check in on Maddox's progress and mainly his wound. I SO hoped that he wouldn't need a graft or a shunt, although I KNEW the shunt was pretty much a definite from my cheated googling. I knew he needed to be in the hospital, but I so wanted him home so they could be a normal family. I'd come home and look through the pictures and cry and miss him and wish they could all be together! Not wish that Maddox was different like you'd think because we were all happy with the Maddox we had, BLESSED with the Maddox we had, just wished the Maddox we had was with his AMAZING Mom and Dad morning, noon, and night! After that, I wished and hoped Maddox would be home or well enough to meet his cousin, Mack, when she came to visit when he was a month old. The hospital wouldn't give any timelines so I was pretty much losing hope there as time went on, but continued to be happy with his progress. I still could've cared less if I could hold him, even though I wanted to, I wanted his parents to hold him whenever they wanted and Mack just to SEE him. Brandon, Uncle Brandon to Mack said he'd MAKE it happen...Mack WOULD see Maddox! He phrased it much differently, funnier, in a way similar to how I would've or how he said I'd knock people down to get to my nephew. Once he said that, I KNEW he would MAKE it happen for Mack (HIS Burger Cheese!).

When I got the first bottle feeding news from Kelly on January 7th, I was ECSTATIC!!! I felt like that was a HUGE step and if they were talking bottle feeding in order to get him ready to go home, then it was REALLY HUGE!

When I would check in, sometimes I would specifically ask about THE shunt, is it looking like it's needed, have they said anymore? Things were looking good, then one day I checked in with Brandon, obviously January 9th, probably asking how the bottle feeding went and received a text back saying that he'd just had the shunt put in and that the surgery went great, so on and so forth. WHAT?!?! Why am I finding out NOW?!? Well, then again, the importatnt part is that it went WELL! Then, after I could process what I read and breathe, I was actually relieved to not know until it was over so that I didn't have time to worry, panic, stress, cry, etc. The scary part was over without me ever being the wiser! So that was THAT! TWO surgeries down! Maddox is a BAD @SS!! A few days later bottle feedings were resumed as long as incisions were cooperating! I was excited that on my next visit when I talked to my little Baby Love that he would be able to look up at me and I could use my animated face and voice that I use with babies! I couldn't wait to have a face to face conversation with Maddox! It may sound like a small thing to some, but I was excited! Last time, all of the things I said were whispered, and I'm sure I might whisper things again because I know Maddox can keep a secret, but I was excited to see his little face while I told him all the things I had to tell him...I couldn't wait!

Maddox's FIRST bottle! The feeding tube is still there until he fully gets the hang of it!

Holding Mommy and Daddy's hands!

Maddox on his BACK!! He wasn't able to be on his back due to his wound, but after having his shunt he HAD to spend some time on his back so that his shunt wounds could heal! It was a welcome sight to see him like this! I said he was probably more alert because he liked his new view, better than staring at a mattress!