Mason is One!

Mason turned one this week! Where did the time go? My "on this day" on Facebook has had me in tears daily reliving his birth, first surgery, and NICU time. It is amazing, really. I am not sure that I cried at the time. God's grace and calming hand gave me the ability to focus on him, without many worries. I think the medical community would probably describe it as some kind of mild shock, but I know exactly where that peace came from.

Last Friday, Mason had an MRI with a CSF flow study under anesthesia. His neurosurgeon wanted to evaluate the new pathway for CSF that was made from the surgery in March. At our follow-up appointment yesterday, he told us that he is still not convinced that this is working well enough for Mason. His ventricles (fluid filled spaces in his brain) are staying the same size, but his fontanel (soft spot on top of his head) is still full. That is a sign that the pressure is still to high in Mason's head. The surgeon said that sometimes, with time, the ETV can start working more efficiently. We will go back June 1st for another MRI and neurosurgery appointment. If Mason's ventricles are the same size, but his fontanel is soft and not full, then we will carry on with reassurance that the ETV is enough to handle the CSF that Mason's brain is producing. If Mason's ventricles are the same size, or larger, and Mason's fontanel is full, then we will plan for a VP shunt revision. Mason's equipment from his non-functioning shunt is still in place, so we hope that if we have to do a revision, all they need to replace is the portion of the shunt that goes into his brain. 

My prayer is for wisdom for hte docs to know which way to go and comfort for Mason in the meantime. Guys, I will admit it-- this is tough. Mason is getting three teeth and deep in the not-the-momma stage. It is very difficult to know if he is fussy because his head hurts, if his teeth hurt, or if he is just a one-year-old who doesn't know how to process his feelings. So please pray for comfort for him to get through the next three weeks without incident. 

Mason's ETV Surgery

Mason has hydrocephalus. It is caused by his Arnold Chiari malformation (type 2), which is caused by his Spina Bifida. Basically, the pulling of his spinal cord causes his cerebellum to be pulled to the opening at the base of his skull, blocking the flow of CSF from his brain. Thus, hydrocephalus. He had a VP shunt placed when he was 15 days old to help alleviate the pressure on his brain from the fluid. That shunt failed in July 2016 and he had a revision (they replaced the portion going from the valve, which is behind his ear, to his ventricles in his brain.) We learned at a routine appointment on March 15 that his VP shunt had failed again. Our neurosurgeon in Austin recommended trying an Endoscopic Third Ventriculostomy (ETV) with choroid plexus cauterization (CPC) instead of placing a new shunt. This involves creating a new pathway for the CSF to drain from his brain through making some "holes" (not destroying brain tissue).
We had heard of ETV before. We had even asked about it initially when he needed his first shunt. However, failure rates are higher for kiddos before they are three months, so it wasn't an option at that time. ETVs can be awesome, if they are successful. This could replace his need for a shunt and be the only surgery he needs for his hydrocephalus for the rest of his life. HUGE. However, the risks are also higher. Our surgeon quoted us that in the studies done on ETVs, the risk of hitting the basilar artery (really bad) was 1 in 400. We felt comfortable with the surgeon, his humility (he told us that he had recently stopped an attempt at an ETV because he felt he was too close to the basilar artery), and decided to try it. Mason's surgery was March 21st.

The procedure was successful and Mason handled the anesthesia like a boss, as usual. The hardest part was that we had to stay in the hospital for 3 days with an external shunt coming out of Mason's head to monitor ICP (pressure in the brain). Now, I have worked as a nurse in an ICU and a cardiac step-down floor; thus I am no stranger to cord management. However, a cord hanging out of your baby's brain puts cord management into a new light. It freaked me out. It was so difficult to manage it while nursing him at night. Especially because he would become unlevel when I moved him from his crib to the chair to nurse and the alarms would all sound off like crazy and, here I was, holding a half-asleep and hungry baby attached to a pole by a cord from his head while trying to silence alarms on a monitor screen that is above my head. Tough work.

Needless to say, I was grateful when they gave us the all-clear after three days in the hospital with a head leash and pulled the exterior shunt and let us go home. Mason has just really started moving since this procedure. He is so close to crawling and has learned to get from sitting, to his belly and back to sitting. His increased mobility is truly amazing. (I tried to include a video of him doing his tricks, but I don't seem to know how to make it work, so....)

We go tomorrow for his follow-up visit for an MRI and an appointment with the neurosurgeon. Please pray for continued good reports from the ETV procedure and continued increased movement for our sweet boy. 

Mason Update- 8 months

Last week, I discovered that I had never published Mason's birth story. I had it all typed out and was waiting to add in pictures, so I saved it and then forgot about it. So you get to go from birth one week to 8-month-old the next.

Mason was born May 10, 2016 and we were in the NICU for 15 days until May 25th. Seth graduated from the Maneuver Captain's Career Course (the 6-month reason we were at Fort Benning) on June 15th, but the Army let us hang around Fort Benning until the end of July to make sure Mason was all settled before our move. We needed that time.

At Seth's graduation 

He started serial casting to correct his clubbed feet on May 31st. This means that each week, we made the two hour trek to Atlanta to get new casts on his legs/feet. The orthopedic surgeon, Dr. Olszewski, would place casts on his feet and hold them in a more correct position (a little more each week) until they were stretched to normal. This went on until July 12th when she performed a procedure where she made incisions in his Achilles' tendons and stretched them the rest of the way. A final cast in the OR after the procedure and a week and a half later, his feet were free and into braces! That is the gear we are still currently wearing--a Ponseti bar with attached AFO boots. These can come on and off but stay mostly on. Eventually, we will move to more ambulatory boots during the day with the bar and shoes at nighttime and naps.

His first casts

The bar & shoes

His first bath that finally happened at 2.5 months old once his casts were gone!

We also had several trips to see Dr. Brahma, his neurosurgeon in Atlanta, during that time. On what was supposed to be our last trip, July 19th, they discovered that Mason's VP shunt had malfunctioned and that he needed to have a revision. It took place the next day, on July 20th. Thankfully, the only sign he presented with for this malfunction was an increased FOC (head circumference). We had actually noticed it, but had been reassured that without symptoms of increased pressure in the brain it didn't warrant emergency surgery. We were glad that they were able to get us in for the revision the next day. The portion of his shunt that rests in his ventricular space in his brain had blocked by the chloroid plexus, which is just the part of the brain that produces CSF. The neurosurgeon said that it was a little like something getting sucked into the drain of a swimming pool. He replaced that part of the shunt and, thankfully, that was all that was needed to correct the problem. Mason did come off of this procedure more rough than he had any other procedure to date. He vomited twice in the first 24-hours and had a difficult time waking up fully. After the first 72 hours, he was back to himself. However, he did look like an alien for a month or so while his skull bones readjusted to his brain after having filled up with all that extra fluid.

Alien head post-VP shunt revision

We moved to Texas the next week. That part was extra stressful because we always choose to move ourselves instead of having the army pay to move us. You pocket the majority of the money that they would have instead given to the movers if you do it that way and we choose that money over our sanity. Seth wasn't due to report to Fort Hood until the second week of August, so we got to spend a lot of time visiting with family and celebrated Aden's second birthday before we moved down to Fort Hood. Our house on base wasn't ready for a bit, so we lived in our travel trailer on Belton Lake for three weeks and living in a travel trailer with a two-year-old, a 3-month-old, two golden retrievers, and my husband is not something I would ever want to attempt again. Thankfully, our house was ready much sooner than we anticipated!

We did have a scare at the beginning of September. I was convinced that Mason's shunt had blocked again. He was acting slightly more fussy and his fontanel felt full. His shunt checked out ok, but apparently he had a virus that caused his platelets to be low and allowed for his VP shunt to cause a little bit of bleeding on both sides of his brain. His body reabsorbed the blood after his platelets went back to normal and everything was fine. However, because we presented with an infant with a chronic health condition with bleeding on his brain, and Seth is in the Army, we flagged as high risk for abuse and had to handle a case opening, and subsequently being closed after a home visit with CPS. I was very angry at myself during that time. I was the one who felt like something was wrong and because of my alert we were being investigated by CPS. The physicians cleared us of any worry about abuse while we were in the hospital, but because CPS had been notified, they had to follow-up on the investigation. At one point Seth had a CPS caseworker (from the wrong county who mistakenly got our file) say to him "Look, I'm not trying to storm in and take your kids, JUST YET." We had already been told by physicians that there was no reason to suspect that we abused our kids and yet someone whose job is to protect kids who are being abused/neglected had the poor professional skills to threaten that taking our kids away was a possibility. Thankfully, the case worker who was supposed to have our file got it and closed our case very quickly. This experience was more than humbling. In my ignorance, I didn't realize that CPS cases can be opened so easily and get closed routinely for situations just like ours. I know that God's plan is perfect and that our experience will prove helpful at some point, whether it be to help show grace or reassurance to parents in a similar position or just to humble us even further away from our thoughts about "those people" (in this case "those people" are people investigated by CPS but it means different things at any given time). To-date, I am still looking for my chance to help someone because of this experience and still struggle with lots of negative feelings about it.

Other than that, our lives have slipped into a routine. We are so very grateful for that. Mason had his circumcision on November 22nd and that was the last procedure that we knew was coming. His being circumcised will help decrease his risk of UTIs, which is awesome because he has already had one. We catheterize him five times a day now and he takes oxybutynin three times a day to help with bladder elasticity. That is a real bummer because he has to take it on an empty stomach. Trying to convince a baby that he doesn't need breastmilk when he is hungry is pretty difficult when his caregiver is the source of that milk. We see the physical therapist once a week and he has already made some great improvements since seeing her. We shouldn't see the neurosurgeon until March for a repeat MRI (six-months from his last visit). Our next orthopedist appointment is also in March and we are hoping to get to move to some shoes that will help facilitate more mobility during the day at that time. We will see the urologist for some urodynamic studies in April and we hope to see that this oxybutynin is helping to reduce the pressure in his bladder, thus reducing the risk of damaging his kidneys. In the meantime, we hope to get established on the neuromuscular team in Temple so that one day we will be able to go for one long day and hit a lot of his specialists.

Mason loves to roll around as a means of transportation. He still is a bit wobbly with sitting, but is definitely getting more stable. He is starting to move his knees up like he might try to army crawl soon, but we also know that it might be a while before he has the strength to do it. Because of the lack of innervation to his lower legs, a lot of the accessory muscles in his calves and down don't work as well as they should. This hopefully means that he will just need a little bit of help with walking with some ankle support, but all of that will reveal itself in the future.

At this time, we just ask that you continue prayers for strength for Mason and peace for us. It is very easy to let the devil poke at our dreams of having a "perfect" child. Especially when we will most likely never know if his Spina Bifida was caused by a folic acid deficiency in me early in his pregnancy, by a gene mutation, our genetics, or a mixture of them all. We are currently participating in a study with University of California San Diego to explore the involvement of DNA in Spina Bifida. It is a little reassuring to know that through the research of our DNA, they might one day know  more about Spina Bifida. I know that God wants to use Mason specifically to help further his Kingdom and I hope that one day that knowledge overcomes my fears and worries for my son.

Mason Parker

Going back and reading my last post about our prenatal diagnostic testing sure brought back a flood of memories! I am so glad that our little man is in our arms now!
They started picking up regular contractions on my NSTs at the end of April. They weren't making me progress at all, so they told me just to try to take it easy to make it to our scheduled c-section date of May 30th. Early on the morning of May 10th, I started having non-intense but very regular contractions. Around 7am Seth and I started driving to Atlanta just to be sure that I wouldn't deliver in Columbus and have to be two hours from Mason. We both completely expected them to send us home, but wanted to head that way just in case. My doctor there, Dr. Purdie instead told us that I was in early labor and that we would do the c-section later that day. She said that we could wait for me to progress, but since we knew I was in labor and that Mason would have to be born via c-section due to his Spina Bifida, there was no reason to progress. That day completely flew by. Before I knew it, the anesthesiologist was putting in a spinal block. That was a horrible experience! It made my blood pressure drop twice and they had to give me ephedrine to get it back up. I hope I never have to do that again!
The c-section happened so quickly. The hospital was trialing having a clear drape with c-sections that allow you to see the baby when they pull them out. It was incredible! He came out crying at 1553. Dr. Purdie let the cord stay attached for about 30 seconds and then she milked it to try to get him a little extra cord blood. They then took him to the side of the room where they dressed the sac at the opening of his back with a sterile dressing. Seth got to stand there beside him. He was rocking the outside world well and was perfectly healthy aside from his SB lesion. Seth brought him to me and rested him on my chest for a moment. He was so beautiful and looked exactly like Aden did after he was born but was quite a bit smaller. He was 6 lbs, 11 oz and 18.5" (vs. Aden's 8lbs, 7oz and 20.75") and, although he looked like a shrimp to me, he was a monster in the NICU.

After his brief time on my chest, he and Seth traveled to the NICU at Northside, where we delivered, and I went to recovery. I got to see him for a couple of minutes more once I got to my room. The NICU nurse from the children's hospital across the street stopped in with him to pay me a visit before they moved him. I remember that he was fervently sucking on his pacifier. He wasn't allowed to nurse at all prior to his surgery just in case complications arose and he needed to go into surgery sooner.

The sterile dressing that they placed on his back to help keep infection out

Thankfully, everything went according to the plan that we had set in place during the pregnancy. Mason had his spina bifida lesion closed the next morning, about 17 hours after birth. He rocked the surgery and was extubated quickly. I got to go over to see him after his surgery. We were able to touch his head and feet through the incubator. The next day, we were able to hold him and I was able to finally nurse my baby! It felt like it took forever for him to get the hang of it, but really it was only a day.

We stayed in the NICU for 15 days. The average time for SB babies is 7-11 days. We were a little prolonged because our neurosurgeon, Dr. Brahma, wanted to make sure that he truly needed or did not need a VP shunt. VP shunts help the fluid in the brain (CSF) exit the brain. Mason received his shunt on May 23rd and we went  home on May 25th.

We were so blessed during his NICU stay. Our team of physicians at CHOA Scottish Rite were phenomenal. The nurses in the NICU there are among the best in the country, I am sure of it. We stayed at the Ronald McDonald House across the street and were so impressed with the service they provide. They gave us a safe, warm, cozy place to stay and access to food to eat without making us feel like we were being waited on. It was exactly what we needed.

Looking back on Mason's birth and the NICU stay that followed, Seth and I continue to feel overwhelmed by how much peace we felt. We should have been overcome with anxiety. Our tiny, helpless baby boy was undergoing general anesthesia and having very, very important parts of his body worked on. He spent a lot of time away from us and in the care of strangers. I had a major surgery and was having to travel back and forth to the NICU to see him and be with him. Yet, in the middle of it all, we felt comforted and calm. We know that the peace we felt was completely due to the prayers we were receiving from around the country and the calming hand of God. He allowed us to have full confidence in Dr. Brahma and his team. He allowed us to rest at night and for our bodies to heal, despite the short nights and long days. We were very aware of His presence during our time of need and will always remember the support received from our community for Mason's healing.