Myelo Clinic Today

Today was Mason's full team appointment at Myelo clinic.  Every 6 months he has this long day of checkups and testing to keep track of how he is doing in a variety of areas.  I thought I would share a few of the highlights for those who are wondering how he is doing at age 3. 

Developmental Pediatrics - According to this doctor Mason is doing great in overall development (outside of those pesky physical milestones like walking that he'll never accomplish).  He's speaking, figuring, sitting, playing, and progressing.  Yay!

Physical Medicine, Physical Therapy, Orthotist, Wheelchair Fitting, and Orthopedic Surgeon - I'll cover these three together because they are interrelated in some ways.  We came to clinic with all Mason's equipment (wheelchair, AFOs, stander, HKAFOs) and some questions. 

1. How can we help Mason learn a safe way to climb down to the floor from his wheelchair?  Currently, if he climbs down by scooting forward onto his footplate and then to the floor he scrapes his back (right across the large scar where his back was open at birth).  This is bad.  So between the specialists the current plan is two-fold.  First, we'll work on teaching Mason to turn around in his seat and climb down backward like he does climbing down the stairs.  The difficulty is maneuvering the lower half of his body into the right path (because he can't feel anything) and not hurting his knees when they come down onto that hard footplate.  We'll work on it at home and then if we can't get a good climbing pattern figured out we can access physical therapy for some help.  The second part of the plan is that our wheelchair company is creating a padded footplate for Mason's wheelchair so it won't be so hard on his knees or back when climbing down.  We have to be careful that it doesn't interfere with his ability to climb UP though. 
2. Do we need to add a heel/wedge to Mason's HKAFOs or one shoe?  His legs are not even when in a standing position, partially due to the small contracture of his left knee from the large callus that femur made when he broke the leg last fall.  Partially it is due to his hips, which are a bit unevenly seated in their sockets as well.  What this means is when Mason uses the HKAFOs in his stander he still gets a red pressure mark on that thigh that no matter how many times we've adjusted the HKAFOs we can't get rid of.  This limits his time standing.  The standing is part of our treatment of his osteoporosis, helps his bowels function better, etc.  We really need the standing and would like to be able to do it for 2+ hours per day.  Right now we've only been able to do about 30 minutes at a time before the pressure happens.  The current plan is to try adding the insoles back to one shoe to see if it helps.  We can call the orthotist to get a heel added to things if this isn't effective.

Occupational Therapy - Mason passed all of this with flying colors.  Basically she evaluates fine motor control and feeding difficulties.  He colors, draws, stacks blocks, threads large beads on string, etc.  I knew he was fine in this area already. 

Urology - Today Mason had ultrasound done to check his bladder and kidneys. The scans showed that they are stable - which means what we're doing is working.  We continue with his current medication and catheterization schedule.  We also discussed enema options with urology.  What we are doing is working well (cone enema).  That is great.  However in the future we know we want to transition to a different enema setup that is more independent for Mason to do himself.  They referred us to the Colorectal specialists to begin that evaluation and process.  (For those in the know, we're looking at the Peristeen system. Many people around the country travel to Cincinnati Children's Hospital for their week long program but we're blessed that one of the main doctors from that program is now heading things up at our hospital. ) 

Mason busy making friends.

Orthopedic Surgeon - Yes, this is the second time I'm mentioning this doctor.  Why?  Because we have a separate issue that we will be watching with just them.  Today they sent Mason for spinal x-rays to check the curvature on his spine.  Developing scoliosis is something that in not uncommon with Spina Bifida, especially with Mason's level of paralysis (incomplete T12).  Today we saw that he does have a curvature beginning but it is below 10 degrees so it is called Mild Spinal Asymmetry.  If it increases to more than 10 degrees it will be scoliosis.  For now we will track this every 6 months.  If the time comes that his curve increases we have a variety of treatments depending on how severe the curve becomes (from bracing to spinal surgeries like a fusion or having rods placed). 

Well, those are the major things from today! Next week he has his vision checkup with his developmental ophthalmologist.  He's hoping to choose new glasses - I'm wondering if he'll try a different color. Overall Mason is a happy, growing little boy who is busy enjoying life.

Myelo Clinic–Things Not on My Radar

Time to update again!  Mason had his team appointment in Myelo Clinic yesterday so we’re full of information, not all of it good.  Read on! 

First we’ll talk about the good.

Mason is doing great from a occupational therapy standpoint.  He uses his fingers and hands appropriately to manipulate things, stacks blocks, does puzzles, passes things hand to hand, etc.  With the obvious long-standing limitation that he does these things best when he’s strapped into his wheelchair or something that supports his sitting so he can use both hands and remain balanced. 

Urology took a look at Mason’s bladder and kidneys yesterday by ultrasound and they look beautiful.  The ditropan (medication to paralyze the bladder) and cathing Mason every 4 hours (8am, 12pm, 4pm, 8pm, 12midnight) is protecting those organs well.  No changes here.

Weight gain has finally been accomplished!  Mason had not gained any weight in over 6 months, sitting right at 24 lbs.  He’s now 24 lbs 11 oz.  Slow, but it’s something. 

Eating skills are progressing again.  After all Mason’s oral aversion issues around the brain surgery fiasco last fall and winter was (5 surgeries in 4 months) he is about where he should be with eating.  He uses a fork well, is figuring out a spoon, and finally closes his mouth to take bites about 75% of the time.  This shows itself in big ways like Mason actually taking bites of a bagel or other food instead of everything needing cut into bite size bits.

On to the not quite great but also not bad news:

Poop is still a work in progress.  We’ve been doing daily cone enemas for a month or so to clean Mason out and keep poop off his butt wound.  They work most of the time in combination with his Miralax.  We’ve reduced the Miralax drastically over the month to find a balance between soft enough for the enema to work and firm enough that he’s not pooping in between enemas and getting his wound dirty (infection risk).  It’s just a balancing game that varies daily based on what Mason has eaten and drank that day.

Wound Update!!!  He is healing S.L.O.W.L.Y.  He had some dead skin building up around the edges of the wound in calluses so he had debriding yesterday.  It sounds nicer than it is.  Basically they laid him on his belly and went to work with tweezers and a scalpel to cut off tissue.  Mason didn’t feel a thing, of course.  As a matter of fact his reaction was to fall asleep for his nap.  Yes, I’m serious.  They didn’t get all the calluses off but we’ll see how they’re doing in a few weeks.  Here’s a picture for those who have asked.  We’re to keep changing his bandage with every diaper change and continue limiting his sitting time in things like the booster seat at the table, his wheelchair, etc. 

The Bad

Now we come to the part of the visit I don’t want to think about.  The scary part.  You see, going in I had a page of questions and concerns.  It’s the only way to keep track of everything when seeing so many specialists in one day.  On my list was a reminder to let the orthopedic surgeon know Mason’s right foot/ankle and hip have had drastic changes in the last two months.  They have always been ‘tight’.  The hip is hard to straighten, the foot/ankle is hard to bend into a ‘flat’ position like when you are standing.  Which is why I do stretches and physical therapy several times a day with Mason. 

In the last two months it hasn’t mattered how diligent I was, we were seeing things regress.  We can no longer straighten his leg at the hip completely and cannot get his foot/ankle into a flat or neutral position.  That triggers a few problems, including not being able to fit/wear his HKAFO braces for standing, not being able to wear the foot brace at night without bruising, not able to wear any structured shoe, etc. 

We saw the physical therapist first.  She quickly told me I was right, there was a significant difference, and went to grab a few people.  Neurosurgery and orthopedic surgery.  WHAT?!  Neuro?  I knew that was not a good sign. 

The neurosurgery nurse asked me just two questions to start:

1. Has Mason had a significant growth spurt in the last few months?  Yes, he’s gained nearly 2 inches.
2. What changes have we seen in his body?  The ankle and hip contractures.

Then she said words that hadn’t even been on my radar.  “We’ll need to check for a tethered cord.”  My heart dropped into the floor.  I knew in theory that one day Mason might face that.  You see, when your spinal closure is done at birth the cord and nerves may begin to attach or tether to the scar.  A spinal cord is not stretchy.  Often when a child has a growth spurt their body stretches and the cord does not.  That causes neurological symptoms, and very often damages the spinal cord or nerves further. 

If Mason’s cord has tethered they will do a surgery where they try to separate the cord and nerves from the scar.  In the process there are very real risks that they will cause MORE damage to Mason’s nervous system.  In other words, he could come out of surgery with even more paralysis and problems.  For example, that hip function he has, the ability to pull up at the hip, could disappear.  The weak abdominal and back muscles we already fight to help him sit and balance could be made weaker or completely paralyzed.  I just don’t want to think about it. 

I’ve gotten comfortable with Mason’s disability.  Things like a wheelchair make me happy, they give him independence.  I’ve accepted what limitations he has and thrill to watch him push and make the most of what he can do.  A tethered cord could make us go through the process all over again with new levels of disability.  Loss of function.  Three little words that could change everything.  Again. 

What Comes Next

There is still a possibility that Mason’s cord is not tethered.  We may just be facing some leg surgeries to cut tendons, casts, and a lengthening process.  If I had to choose I would take that in a heartbeat.  Even if his cord is tethered we may end up needing those surgeries too, to stretch out and lengthen things that have pulled tight.

We expect to hear from the neurosurgeon Monday with a plan for a sedated MRI of Mason’s spine.  Under general anesthesia they’ll take a series of pictures and compare them to his baseline MRI done earlier.  They will look for changes and go from there. 

Another scary thing to think about is that a tethered cord can happen again.  And again.  And again.  And each time there is a risk of doing more damage. 

In My Head

How does this feel as a mother?  Terrifying.  Helpless.  Angry.  Peaceful.  Talk about a contradiction!  While I want to cry and shake my fist and pound on the doors of Heaven asking ‘why?’, when I look back at Mason’s life so far I have peace.  I always remember the very first priesthood blessing I had when we learned Mason would be born with Spina Bifida.  Here are my thoughts from the very first post on this blog:

“…the blessing only confirmed in my heart that this is not going to be an easy journey.  There was no promise of healing, that the troubles would all go away.  Instead I was promised physical health and strength to bear this burden, that it will be used to draw my family closer together, and that God was with me and with my son.  I was told this is no accident, God planned this path for our family, and gave this body to my son to accomplish God’s purposes.  I know that His plan is the best one, though it is often not the path we would have asked to walk.”

I know none of this is a surprise to God.  He’s with Mason and He is with us on this winding, uphill climb.  The best part is that He never leaves us to climb alone.  We have the God of Heaven and the Savior of the World on our side.  He is strong when we are weak.  His atonement strengthens us to take one more step.   He gives us peace no matter the circumstances and he loves us through our tears, our anger, and our fear.  His mercies are new every morning.

Urology Updates and More

It’s never just one thing is it?  Mason had three tests today to evaluate how his bladder and kidneys are functioning.  First up this morning was a renal ultrasound.  He did great with this and really didn’t mind the test.

Next we headed to fluoroscopy in the radiology department for a VCUG.  This test combines injecting a contrast/dye into his bladder with a catheter and taking x-ray pictures.  Daddy came along today so Mason wouldn’t be alone in this test (pregnant women are not allowed in during x-ray). It took a little over 15 minutes to get all the pictures they wanted.  Then the doctor showed us what he saw. 

First, Mason’s kidneys look fine.  He is not having urine reflux into his kidneys and damage them.  That is wonderful!  Mason’s bladder is getting thicker though.  The bladder is a muscle and the more it spasms the thicker the wall gets.  This limits how much urine his bladder can hold. 

The unexpected thing we learned is that Mason’s left hip is currently dislocated.  You can see it clearly on the x-ray, one hip ball is in it’s socket while the other is not. What does that mean?  Well, we don’t know yet.  We are waiting to hear back from a different doctor about that.  It isn’t surprising because Mason’s quite flexible and can’t feel when he’s overstressing joints.  We just are not sure what needs done to help him. 

The last test Mason had done today was a urodynamics study.  By the time we got situated for this test he had had enough of doctors.  He fell asleep.  I don’t blame him!  Because he was asleep we got the most accurate pressure readings possible AND they ran the test twice to be sure.  This was an answer to prayer because I knew that if he was awake and crying during the test it would mess up the readings, and doctors would be basing medication decisions on this test in combination with the other two. 

In the end we came home with changes to our days.  Mason is to begin taking Ditropan.  What it does is relax or paralyze his bladder so it isn’t spasming all the time.  That means the muscle isn’t working overtime and thickening.  It also means we need to begin cathing him more often (4-5 times a day instead of 3) because his bladder won’t be working.  It stinks because medications bring side effects, but it’s important to keep Mason’s bladder as healthy as we can. 

The side effects vary a bit by child, we’re expecting to see the following:

• constipation – this is on top of his current constipation struggle, so we’re going to become more aggressive in our Miralax use to combat that.  If it doesn’t work we will look into different measures like regular enemas.
• flushed cheeks 
• dry mouth – we’ve got to keep him drinking.
• overheating – this is a possibility and one we’ll have to watch closely as summer comes because we can’t just look at his face as a basic gauge, it will already be flushed most likely.

I think that’s all for this update!  In general Mason is doing wonderfully.  He’s growing and hitting milestones like a champ.  We are enjoying every day watching his personality show more and more as he grows.  And we are so grateful for doctors and medications that can help our sweet son’s body function and protect vital organs like his kidneys.

Myelo Clinic and New Things

Ahh, the joys and trials of Myelo Clinic days!  Things never go quite as I expect and I always come away with a deluge of information.  I love seeing so many doctors in one day but Mason is less than thrilled.  To keep things interesting I made a rookie new mom mistake that I haven’t made since Makayla was a baby.  I grabbed the small diaper bag off the hook instead of the big one we used last week when Mason had surgery and showed up for clinic with exactly ZERO diapers.  For the child who needs changed at least every 30 minutes.  Mmmhmmm.  At least we were at Children’s Hospital where diapers are always in stock and on hand so they just gave us a stack for the day.

Our day began early, leaving the house at 6am to make it there in time for Mason’s rapid MRI of his brain.  Makayla came along today for two reasons – one, she wanted to go in the MRI with Mason so he wouldn’t be alone (I’m pregnant so I can not go in), two, she wanted to learn more about what Myelo Clinic is like, meet the doctors, ask questions.  It turned out she was not allowed to go with Mason during his MRI because she is under age 18 – dumb, but true.  So we listened to the poor guy cry while they strapped him down and did all his pictures.  We also got a renal ultrasound of Mason’s kidneys and bladder done today about halfway through our visit.  The urologist looked at the scans and said everything looks fine so we don’t need to increase our cathing schedule or add in bladder medications.  When asked by Makayla about what the medications do this sweet doctor launched into a 15 minute mini-lesson complete with diagrams drawn on the paper of the bed.  Mason’s circumcision had also reattached to the penis (penile adhesions) so the urologist pulled on that and unattached it again.  Thankfully he didn’t feel it at all – a small perk to nerve damage.

Neurosurgery looked at Mason’s MRI and everything looks wonderful.  His newest shunt is working as it should for now.  Of course, it’s only 10 days old.  Things could change any time.  The doctor is scheduling a full brain and spinal MRI for sometime in the next month or so to get an official baseline on Mason’s body.  He will have to be put to sleep with anesthesia for that process, which will take up to 2 hours. 

The biggest news to us today was from Physical Therapy and Physical Medicine.  They focus on mobility and after seeing what Mason can do and learning what he is trying to do at home (climb stairs and pull up to stand at the couch) they decided it is time to get some braces for Mason.  Without the bracing there is no way Mason will ever stand, he simply does not have the nerve and muscle function to even maintain kneeling beside the couch.  His functional level is T12, that means that the nerves and muscles below the 12th Thoracic vertebra are not working. 

So today that handed us a prescription for HKAFO’s.  That stands for Hip Knee Ankle Foot Orthotics.  I’ve not been able to find too many nice pictures of these online to share so I’ll point you to a post of another young man with Spina Bifida, Caleb, whose progress we love to watch in his mom’s posts.  She has a picture at the top of this post of really short AFO and then tall HKAFO’s with full leg braces and a band that goes around the pelvis/waist.  These taller braces are what Mason is getting.  He goes in 2 weeks to be measured and casted then the orthotist will get to work making them.

The idea for Mason is that these will enable him to stand and play at a new height, one he is trying to reach but physically cannot.  His will have locks at all joints to keep from bending because he can’t actually use them that way.  The Physical Medicine doctor does not believe Mason will be content to use these long-term because they will limit him from actually moving places and chasing his siblings, but they will be good for his bones and body (weight bearing = strengthening) as well as giving him some developmental perks.

Those are the big things from today’s visit and so I’m going to get off this computer and go help my children, who just came in from outside and are in desperate need of hot chocolate they’re telling me.    

Day 10: More Ways Pregnancy Was Affected

Welcome to 31 Days of Spina Bifida Awareness: Day Ten!

Mason’s sweet face at about 8 months along.

Today I’m tackling more about how SB changed my pregnancy.  There are a lot of small things that change.  Physically I noticed a lot less movement and it was generally not as strong.  It makes sense now that Mason is out and we see his paralysis.  What I generally felt were the fluttery hits from his fists, or his hiccups.

I also had some extra aches and pains that, while not unique to SB, were related for Mason.  Late in my pregnancy Mason turned breech.  While that impacted a few things, physically, it hurt.  As he began running out of room in there he ended up with his head up under my ribs.  Not fun at all!  I had sciatic nerve pain from how he was pressing on my hips and back.  Due to his lack of mobility he grew bigger in that position and couldn’t turn head down for delivery.  (More on why this matters in another post this week!)

Another big change SB caused during pregnancy was the extra appointments.  Up until Mason’s pregnancy I have seen a midwife at a local office less than 10 minutes from my home.  Once a month until near the end of pregnancy I slipped over to her office, had my checkup, and came home.  Easy-peasy.  Once Mason was diagnosed with everything I continued those appointments and added in visits to the high risk clinic’s perinatologist monthly for high level ultrasound in a hospital an hour from home.  As I got near the end of pregnancy those visits for ultrasound increased.

Why did I need all the extra ultrasounds?  Doesn’t Spina Bifida happen in the first month of pregnancy and stay the same to the end?  Yes and no.  During these appointments the doctors were checking on Mason’s overall growth and were also watching for the dreaded hydrocephalus to being.  Being a baby with the Myelomeningocele version of SB Mason had a 90% chance of developing hydrocephalus in the womb.  If it happened too early or increased too rapidly he would need delivered preterm.

In the end Mason did develop hydrocephalus.  I know now it was mild compared to some cases but we had to watch it frequently as it was changing. 

At the very end of pregnancy I had a few extra appointments getting ready for delivery.  Tomorrow I’ll be talking about delivery options (vaginal or c-section).

Day 8: Hearing the Diagnosis

Welcome to 31 Days of Spina Bifida Awareness: Day Eight!

You can see the opening in Mason’s spine to the left.
The vertebrae look like a zipper that just didn’t get closed all the way.

There is nothing that can prepare you to hear that something is wrong with the child growing in your womb.  Sometimes there may be clues but they only become clear in hindsight.  On August 30, 2011 at a routine 19 week ultrasound we learned that our seventh child would be our fifth son. Then the technician got quiet.  I could see her returning again and again to all the parts of the body.  She had me sit outside the ultrasound room to wait for a doctor.  That is when we learned our son had Spina Bifida and club feet. It was a shock. 

That evening I received a priesthood blessing from my husband. While there have been many times in my life when I have felt comforted by what I hear in a blessing this was different.  I was calm, truly I felt as if God was putting me in a little bubble so I wouldn’t panic, but the blessing only confirmed in my heart that this is not going to be an easy journey.  There was no promise of healing, that the troubles would all go away.  Instead I was promised physical health and strength to bear this burden, that it will be used to draw my family closer together, and that God was with me and with my son.  I was told this is no accident, God planned this path for our family, and gave this body to my son to accomplish God’s purposes.  I know that His plan is the best one, though it is often not the path we would have asked to walk. 

We were referred to meet with a perinatologist two days later to confirm the diagnosis.  I knew before I went to that appointment that I needed a name for my son.  I wanted another way to bond with him and I wanted my doctors to begin seeing him right away as a child, not a nameless ‘fetus’.  We chose the name Mason and began using it immediately.

To say the appointment was an information overload is to put things mildly. We first met with a genetic counselor who took our family histories. We happen to have nothing that would predispose us to this or any other genetic condition, which is great. She also talked with us about the probability of the doctor wanting to do an amniocentesis. That is where they stick a needle into the uterus and draw out some of the fluid surrounding the baby to run genetic testing on. We let her know that was not our first choice as it would have no impact on our decision to continue the pregnancy but we were open to what the doctor felt was necessary to get the best picture of what Mason was facing.

Next we were taken to our ultrasound. The lady performing the ultrasound was a gem – she asked what we had been told and walked us through each part of our son’s ultrasound. She explained what we were seeing and smiled with us over Mason’s energetic antics in the womb. I will be forever grateful for this kind woman who took the time to explain the things she was looking at.  After about 40 minutes of ultrasound she left to bring in the doctor. 

Doctor Fox and two students came in. Again, they did not assume anything, they asked what we knew. After looking at the pictures from the ultrasound Dr. Fox did his own ultrasound to see it all “live”. He explained what he was seeing and then after he was done sat down to talk with us. He asked some questions and answered ours. He was aware of the fact that this is our tenth pregnancy and we have six living children at home, so he only one made reference to to option to “terminate the pregnancy”.  We reassured him that abortion, which is murder, was not an option.  I was grateful that he did not choose to pursue that line of discussion after our affirmation. 

I know now that our experience was unusual.  Many medical professionals paint a grim picture of the baby’s potential life and push for termination.  Parents are told a baby with Spina bifida will be brain damaged, never, walk, never talk, and be in pain at all times.  You only have to look at my son to see the truth.  Even with his ‘severe’ disability level the only thing from their horror list that may be true is he will not walk.  Many many children with SB are able to walk independently or with some bracing. 

This week I’ll share what it’s really like after you hear the diagnosis of Spina Bifida.  How did I get through the wait?  What changed in my medical care?  What plans did we need to put in place for birth?

Myelo Clinic Day–Updates

Today was a day full of doctors and therapists for Mason - Myelomeningocele Clinic!  I have to say I’m glad these appointment days only come every so often because it is always information overload and takes me a while to process.  Part of that processing is writing it up here on Mason’s blog, so here goes!

I woke Mason up just before 7:00am to change his clothes, catheterize, and feed him a bottle before we needed to hit the road.  Grandma arrived to stay at home with Mason’s 6 older siblings and he was a bit jealous.    By 7:30am we were in the van and driving to Children’s Hospital an hour away.  Halfway there Mason was done with the carseat and made his opinions known – loudly.  We hit some morning traffic but made it to our exit at last.

Mason’s first stop at Children’s today was the Ultrasound department.  He had a brain ultrasound to check the fluid level in his ventricles and make sure the shunt is working well since the revision at the beginning of the month.  Then he had an ultrasound on his bladder and kidneys to see how those are doing.He was rather interested in the kidney ultrasound as you can see.

Next we walked back across the hospital to Myelo Clinic, signed in, and sat down to wait.  We chatted with a few other myelo patients including a teen boy Rodney who has a similar lesion level as Mason.  It was so nice to be able to ask him and his mom questions about what life had been like growing up so far.  We found out that even though Rodney is in a wheelchair with no leg function one of his favorite ways to exercise is swimming.  His mom said it took a while to build up enough upper body strength to swim without being able to kick, but totally doable.

The nurse finally came to take us into clinic.  First stop is a scale to be weighed – Mason is just a smidge over 21 lbs.  Then we were taken to our room, where we would stay for the rest of the morning.  The mayhem began as doctors, therapists, and nurses stop in at random.  I’ll try to explain the main visitors we had today:

Physical Medicine
This woman will be working with us on mobility as Mason grows.  She’s the one who will evaluate and make recommendations for equipment like leg braces and a wheelchair, with input from all the other medical staff on Mason’s team.  After evaluating what Mason can do she asked what we were told Mason’s lesion level was, where his bones were open.  Mason’s begins at L2 (lumbar vertebra 2) and goes down into his sacrum.  While the opening gives you some idea of what nerves will be impacted, a child’s functional level can vary.  She said that it looks like Mason functions on a higher (worse) lesion level, either L1 or T12.  The expectations with that functional level are lack of sensation (sense of touch) from the hips down (butt, low belly, and legs). 

She then went on to explain more of the mobility aspects that affects.  It is likely that Mason could learn to walk some with extensive bracing (braces from toes to waist).  It’s not going to be something he would be able to do beyond childhood most likely because the energy expenditure will be a lot the older and bigger he is.  It has some drawbacks.  He would not be independent with the bracing because it would limit him to standing only, and someone would have to help him get in the bracing.  Once in it he would not be able to sit down, bend and pick things up off the floor, or sit to play.  So it has some major limits.  He wouldn’t be able to walk quickly and play while moving, he would have to use a walker of sorts to help.  He could stand at a table or counter to play though.

She said some children are really driven and want to stand up.  Others would rather use a wheelchair and get around as fast as or faster than their peers.  With a wheelchair he will also be able to get in and out on his own, down the play on the floor when HE wants to.  He’ll become much more independent, even as a toddler.  As a doctor her preference was to follow the child’s lead.  If they want to try walking we go that way, if they don’t, we don’t.  So it should be interesting.  She also said with a lot of pressure from the doctors in Myelo Clinic we might be able to get a wheelchair ordered for Mason when he’s between 18mos and 2 years old, but the wait time once it’s ordered will be 6 months or so.  She was impressed with the idea of Mason’s bumbo wheelchair and thinks it will be a great help to him when he’s ready.

Urology
This doctor said the scans of Mason’s bladder and kidneys look great.  Everything is as healthy as it’s been, so the cathing we do 3 times a day is helping protect his kidneys.  We’ll make no changes to this for now.

Orthotics
I suspected it was time to lengthen the bar on Mason’s foot brace so I brought it along.  He only wears it at night now.  I was right, they lengthened the bar and he should be set for a while.  The next thing to watch for is outgrowing the shoes themselves.

Neurology
We came today with specific worries.  Mason’s head is still healing from his shunt revision earlier this month.  The incision was doing really well with just one stitch trying to work its way up through the skin that was closed over it and out.  We had that with his abdomen when he was teeny and it came out just fine.  Unfortunately we woke up Wednesday morning to red swelling around this stitch and a bit of pus trapped under the skin.  The pus came out later that day but it is still red, swollen, and tender and that stitch is still sticking partway out of his head. 

After looking it over we’ve been given a 2 week course of antibiotics to fend off infection while trying to give his body time to get the stitch out.  If things get worse the doctor can go in and cut it out but then he’ll have to be sewn shut again and could repeat the problem.  We’ll see.  For now we’re praying his body handles things and the infection gets better with the antibiotic.  We’ll also be washing his infection site with a hydrogen peroxide/water solution for a few days.

They looked at today’s brain scan and everything looks lovely.  A lot less fluid in ventricles compared to the scans when he came in at the beginning of the month with shunt failure.  Yay!

Physical Therapy
Ahh, now we get to the things that make my head hurt.  Mason is doing amazingly well.  He’s rolling over (which amazes them) and using those arms to push up on the floor.  Unfortunately his core is still not strong enough.  When we practice sitting he props himself on both hands and is very swaybacked – like this:He occasionally will prop sit with just one hand and reach for toys with the other but generally it is all he can do to stay mostly upright.  He collapses forward often. 

This leads to a number of issues developmentally.  He is 7.5 months old.  There are a lot of hand and finger activities he should be practicing now that he can’t even attempt, like transferring toys from hand to hand or raking the floor to grab small objects.  If he’s using his hands to hold himself up then they can’t do anything else with them. 

Currently Mason has a physical therapist come to our house once every 3 weeks through Help Me Grow.  Their focus is to train the parent to do exercises and we do those diligently.  However we’re moving into needing some special equipment and more frequent therapy that adjusts with him weekly and Help Me Grow won’t really provide what Mason needs.  The doctors would like to have Mason go see a pediatric physical therapist at least bi-weekly, if not weekly.  They would focus on working his core.  They would still teach me things to do but would have more ideas, options, and could adjust frequently as Mason improves or as things don’t help.  We’ll find out next week if there are any pediatric physical therapists in my town.  So far it looks like there is not.  We will probably need to travel into the big city an hour away every week for therapy. 

Occupational Therapy
This leads right into Mason’s OT visit.  Their focus is on arms, hands, core, and head.  Lo and behold Mason is not where he should be in these areas because his core is too weak to support him while he works on upper body skills.  Yes, it’s a vicious cycle, when one thing is off it affects several developmental areas.  We really need to strengthen Mason’s core so he can move on.  They want to see him do OT biweekly or weekly.  As far as we know there are no pediatric occupational therapists in my town.  They’re checking and will get back to us next week.  Most likely we’ll head an hour away to the big city for this too, possibly piggy backed with the physical therapy appointments.  The therapists PT/OT both gave me exercises to work on with Mason at home, some easy, others more difficult.  One series of exercises he really needs requires a roll or peanut ball to sit and balance on.  It’s a big core workout and will really make him work.  Thankfully Amazon carries a peanut physiotherapy ball in Mason’s size.  When we came home today Grandma heard about it and ordered it right away.  It is the yellow one in the picture above.  Thank you Grandma!

Developmental Pediatrician
She went over all the plans for Mason.  She also talked with me about his nutrition and exercise.  Because Mason will not burn as many calories in everyday play with half his body not working we have to be very intentional about encouraging active play.  We also have to pay attention to his nutrition, avoiding a lot of empty calories as he begins solids(choosing a whole fruit over fruit juice for example).  We finally arrived home six hours after we left.  I think both of us were glad to be home! 

Myelo Clinic Today!

What a day!  Today Mason had his second ever Myelomeningocele Clinic.  Myelomeningocele is the specific type of Spina Bifida Mason has, and the most severe.  While he and Mommy hung out at Children’s Hospital his brothers and sisters spent the morning honing their Jedi skills with Grandma in celebration of Star Wars Day.  May 4th is Star Wars Day and the typical greeting is “May the 4th be with you”, an adaptation of “May the Force be with you.”

Mason saw a lot of people in clinic today so I’ll try to go through the major ones.

Physical Therapist – After asking if we had specific things we were working on or any concerns she put Mason through quite the workout.  We came away with a list of exercises and stretches to do:

• Neck stretches to loosen up the right side.
• Sitting exercises to strengthen trunk and neck. 
• Leg stretches to loosen up his knees.
• Hip stretches to loosen up hips and thighs.
• Rolling exercises (back to belly and belly to back) to encourage him as he is trying to roll, training him of the most efficient way to roll without the use of his legs.
• Side laying playtime, which we’ll have to prop his brace with pillows if we want to do this.

We are also to start having the physical therapist come into our home once a week instead of once a month. 

Neurosurgeon – Mason’s head ultrasound from Monday looked great. His shunt is working beautifully. We went over the plagiocephaly (misshappen head) and what we’re currently doing to help with that. Mason also has a funny skull.  His sutures and fontanels (soft spots) are doing fine, but he has a floating piece of bone in his anterior fontanel that is not yet part of any major skull bone.  His soft spot there is also unusual because the front edge is in a V shape. Ultimately all those bones and sutures will grow together.  Neurology just wants to see Mason in 3 months for another head ultrasound and checkup. 

Occupational Therapist – She, too, asked lots of questions and gave Mason a workout.  Her focus right now is on trunk strength and arms/hands.  Mason is about the size of an eight month old in height and weight.  That will make learning to roll over, sit, creep, and crawl more work (on top of his SB issues that also make those things more work).  He will need extra strength in his trunk and arms to compensate.

Mason is already very social and interested in moving.  He tries to creep when on his tummy, pulling with his arms.  However, he also has yet to really relax his hands.  He usually keeps them clenched into fists and does not really try to reach for or swat at things yet.  We’re going to start occupational therapy every other week to help work on trunk strength, creeping/movement, and using his hands and arms.  The Occupational Therapist will also come to our home, probably on a different day that the physical therapist so Mason isn’t too tired to work with each. 

And, of course, I was given a list of things to work with Mason on daily.

Between PT, OT, and the almost weekly other medical appointments we’ll have medical things going on three of the five weekdays a lot of the time.  Should be interesting!

Urologist – Dr. R came in to go over the urodynamics study and renal ultrasound with us.  So far everything looks good with Mason’s kidneys so we’re to stick with cathing him 3 times a day.  The great news is we don’t need to begin Ditropan.  That is a bladder medicine that helps if urine is refluxing into the kidneys and doing damage, but it has side effects we really don’t want to deal with if possible.  Mason gets another renal ultrasound and checkup in 3 months.

By the time we got to the last major doctor Mason was exhausted.  He slept through the entire exam by the developmental pediatrician.

Developmental Pediatrician – This doctor goes over all the other doctor’s reports and also has her own things she checks, including Mason’s skin.  Mason currently has two skin issues, neither serious at the moment.  First is his Eczema, which is on his elbows and all over his head.  We’ve been actively treating it with cream and heavy-duty lotion, so it’s not too bad at the moment.  It gets worse with every bath.  The second issue at the moment is heat rash.  Behind Mason’s knees, which don’t straighten, with all the cute chub he has, the skin is getting hot with the warmer weather and heat rash has started.  The plan for now is to use baby powder or cornstarch regularly to help keep it dry back there.

It was a good day full of ideas, suggestions, questions, and information.  I think my head is about to explode – it seems like there is always so much more to figure out, work on, and learn. 

Next week Mason goes to the developmental opthamologist to check out his vision.  Hopefully all is normal and we can mark at least one doctor off our regular list!

Urodynamics and Ultrasounds

This week is a busy week for Mason!  Today he spent almost 6 hours out of the house for doctor’s appointments.  Friday he’ll do it again for about the same length of time or a bit longer.  The other six children stayed home with daddy today, so I got some fun time just with Mason.  He is such a trooper!

First up today Mason had a urodynamics study done on his bladder.  It involved a catheter in his bladder, a sensor in his rectum, and more sensors taped to his bottom.  Other than this face - he did just fine.  After emptying his bladder (and collecting urine to test for a urinary tract infection) they slowly filled his bladder back up using the special catheter.  The sensors kept track of pressure and muscle tension.  They kept filling him up until he leaked around the catheter.  When he was done peeing they used the catheter to empty his bladder again and measure what was left.  It was a long, boring test in all. Results:  Mason’s bladder holds a decent amount for his age.  He does pee on his own some (which we knew already) but his bladder is inefficient.  It doesn’t squeeze all the urine out.  We had been cathing him twice a day to empty that out and hopefully avoid bladder/kidney infections.  Based on his urodynamics study we’re supposed to start cathing Mason 3 times during the day (none at night).  We’ll see how he does with that as we go along.

Next up he had two ultrasounds.  First a brain ultrasound to check the fluid levels in his ventricles.  From what I could see they look just fine.  I’ll talk to neurosurgery about it this Friday.  The gel flattened his spiky hair…LOL. The second ultrasound was a renal ultrasound to take a look at Mason’s kidneys.  They started with him on his back and checking through his abdomen, then they turned him onto his tummy to get another angle. It was a great way to sneak in extra tummy time for Mason! (See the gel in the hair?) Everything looked pretty good so we’ll talk with a urologist about the specifics of the renal ultrasound this Friday as well.

The only other change is we’re switching Mason to an 8 French catheter from a 6.  We’ve got about a box of the 6’s left to finish using and then he’ll move up.  The only thing that will really do is empty his bladder faster (the tube is a bit bigger).   Cathing 3 times a day will have us going through 90 catheters a month. 

Brain Scan . . . checking the Shunt

This morning Mason and I made the hour long trek in to Children’s Hospital for appointments.  First Mason had a brain ultrasound.  The tech was really nice moved the bed out of the way so I could just wheel Mason’s double stroller next to the ultrasound machine and he could stay in his carseat for the ultrasound.  He was mostly asleep and so she suggested it.  It worked great! His next stop was the 6th floor to see the neurosurgeon for a checkup and review of the ultrasound that we had just done.  Everything (back closure, shunt incision site, abdomen incision for shunt, and ultrasound) looked good.  It’s a huge blessing that we’ve made it almost two months with no shunt problems.  I know we have years and years ahead where it may get clogged or need replaced, which means another brain surgery, but for now everything is working. 

Our neurosurgeon also mentioned sometime in this first year he’ll order an MRI for Mason.  The practice is deciding what age they want to do that at.  Basically it is for a baseline so as Mason grows they can see changes in his brain, skull, and spine.  Mason will have to be sedated for this, it’s a slow procedure (taking pictures slice by slice of almost his entire body) and he can’t move or the pictures are blurry.  That will be interesting.  For now we have plans to go back for another brain ultrasound check in 2.5 months.

We had hoped to see the wound care specialist as well for Mason’s bottom.  Unfortunately she was called in to work on a severe burn victim who was sedated.  She expected that to take 1-2 hours so Mason and I headed home instead.  She’s supposed to call me this afternoon to chat about solutions for Mason’s skin breakdown.  I’m praying she has some wonderful solution.  We’ll see.

Our First Myelo Clinic

Wow, what a day Mason and Mommy had today!  We left the house at 6:30am and did not return home until nearly 1:00pm.  All of that time was spent driving or at Myelo Clinic.  What is Myelo Clinic, you ask?  It is a time when a host of specialists are available to check up on the Spina bifida patients.  The wonderful blessing of clinics is that it consolidates a whole lot of appointments into one morning, saving us travel.  The drawback is it makes for a very long morning.

As this was Mason’s very first Myelo clinic I’ll try to give a rundown of what happened.  First we show up and sit in the waiting room, get checked in, and wait for our name to be called.  As we were one of the first to arrive we got a room quickly.  Exam room 1 was to be our home for the next several hours.  On the door frame a long sheet of paper was hung with a list of all the specialists who needed to stop in and see Mason today.  The door is left open when we’re between doctors so anyone who walks past can see if their name is on our list and pop in. 

Here is who we saw today that I can remember:

1. Margaret the Caseworker – She’s a sweetheart and helps arrange all our appointments, visits, answers questions or finds someone to answer them, and helps track down supplies Mason needs (like catheters).  She’s sort of the command center we work through.  A former neurology nurse, she’s a lifesaver!
2. Lori the Socialworker/Help Me Grow Liason – Lori makes sure we’re staying sane and getting the help we need.  She’ll help us with Help Me Grow services as those start.
3. Renee the Neurosurgical Nurse Practitioner – She examined Mason’s incisions (they’re healing beautifully), checked his fontanel (soft), answered questions, and then called us this afternoon with the doctor’s evaluation of Mason’s brain ultrasound that was done today.  More on that later.
4. Cara the Occupational Therapist – She checked over Mason’s upper body function.  Everything looks good.  She asked if he preferred to keep his head turned to one side or the other, which he does.  Mason doesn’t like laying on the right side of his head where his shunt was placed, which is common.  She reminded me to give him tummy time (we do already), time upright to work on trunk and head strength (yep, we do that too), and to purposefully play with him encouraging him to look to the right with toys and games to help balance out his dislike of that side.
5. Andrea the Physical Therapist – She did a basic check over what Mason can do and will have more involvement once Mason’s casts have been removed helping us work with his legs/feet.
6. Cheri from Orthopedics – She checked in on Mason’s casts and how he’s tolerating them.
7. Rama the Urologist – He is someone we’ll meet with forever.  Today he asked questions about how Mason is doing with peeing on his own and catheterizing.  We’re supposed to measure how much urine we get at all caths for 6 days and write it down along with other information and turn that chart in so they can see if our cathing schedule is good or needs adjusted.  At our next visit they plan to do a urodynamics test to check how his bladder handles pressure.  He also cleared Mason to be circumcised.
8. Karen the Developmental Pediatrician – She’s in charge of the Myelo clinic and did a check on Mason’s development in general.  She also gave us a prescription for his new diaper rash that seems to be a yeast rash (common with all his pooping). 
9. Rosalind the Physiatrist – Physiatrists maximize what a patient can do and assist the patient in adapting to what he or she cannot, have a full medical degree (unlike a physical therapist, who they work in concert with), and prescribe the therapies a physical therapist will help carry out.  Today she mostly check over Mason.
10. Joanne the Clinic Nurse Coordinator – She also stopped in to say hello and see if we had any questions she could find answers to.

Phew!  It wears me out just writing all that and once it was all done we still had to head over to ultrasound for Mason’s brain/head ultrasound to check on his ventricles.  This afternoon I received a phone call from Renee from Neurology.  Dr. J reviewed Mason’s ultrasound and it looks perfect – the shunt is doing exactly what it is supposed to and his ventricles are smaller.  He’s doing so well they cancelled our visit with Dr. J himself that was to be next week. 

When Do We Go Back to Myelo Clinic, see the Neurologist, etc?  Unless something goes wrong with Mason that we notice, like a shunt malfunction, (which we’re praying very hard will NOT happen) we do not need to go back for 3 Months.  It’s a huge blessing.  We are still going in weekly for the clubfeet casting/treatments for a while yet but one single appointment in a day instead of a whole day of appointments every week is going to be wonderful.  In 3 months we’ll repeat the brain ultrasound, do the urodynamics test for urology, and visit with all these specialists again.

The Morning Report

Day 6 in the NICU has started and we got a visit from Mason’s neurologist this morning on rounds.  Dr. J had looked over Mason’s head ultrasound and it’s a mixed report.  There has been no change in fluid buildup or pressure since the last head ultrasound.  While that is a positive, Mason does still have more fluid in his ventricles than he should.  His body is not draining it off well enough to balance out to a normal level.  He also has a bit of fluid down around his back incision which could be some extra. 

What does it all mean?

Dr. J says right now he does expect Mason will need a shunt, possibly putting it in by the end of the week.  The hydrocephalus isn’t resolving (fixing) itself.  His plan is to do another head ultrasound Wednesday and see if he’s improved or if we’re about ready for the shunt.  Obviously they’ll keep an eye on his head between now and then and ultrasound sooner if his soft spots get firmer. 

In Other Areas:

I would appreciate prayer for my milk-making abilities.  My body is struggling to make enough milk for Mason and so we’re pumping when I’m not at his bedside to nurse at night, nursing all day on demand, and supplementing after each nursing session.  This is something I’ve always struggled with, we suspect it has to do with my hypothyroidism making my own hormones unbalanced and not lactation friendly.  I’m working with the lactation consultants here at Children’s today to see what we can do to increase my milk, but we’re also fully committed to getting Mason fed well to keep him growing so we’re supplementing as he needs it.  With the staff here at Children’s overseeing everything he’s growing just fine.  I’ll continue to nurse and pump for as long as we need to, we’re praying to have peace knowing what to do as we go along.  We’re also praying that my body figures out the milk-making business!

Prayers Answered and Final Countdown

Mason’s nose and mouth with arms over his eyes.

Today we had our last scheduled ultrasound to check on baby Mason before delivery day.  Jason was able to come to this one and we met one of the neonatologists, the last perinatologist, and toured the NICU there at the hospital.  Mason will only be there a few hours before transferring to Children’s Hospital.

Okay, so let’s back up and go through the visit so I don’t forget anything.  First of all Mason weighs about 6lbs 10 oz already and is 35 weeks 6 days along.  Everything looks good.  As a matter of fact God answered our prayer and Mason’s hydrocephalus has not increased AT ALL since his last ultrasound!  A huge blessing because it gives him two more weeks before we’ll deliver. 

Mason is still breech however.  If he doesn’t turn head down before delivery they’ll have to do a vertical incision for my c-section to protect his back/spine, which has some repercussions for me, but nothing we can’t deal with.

We’re officially scheduled to have a fetal lung maturity test (long needle into my uterus through my abdomen) at 8:00am on Monday January 9th, followed by a c-section at 9:30am that same morning.  After my disastrous visit last time (read it here) with one of the obstetricians at the high risk clinic my perinatologist Dr. M personally called and scheduled my c-section to be done by him.  Yay!  That’s what we wanted and is another blessing.

After our ultrasound we met with the neonatologist to have final questions answered about what will happen and what will be possible once Mason is delivered and before he is moved to Children’s Hospital.  I had a few questions, so I’ll share those with his answers:

1. What happens to Mason once he’s pulled out?  He’ll be held up for me to see and taken directly to the NICU.  Jason is able and encouraged to go right with Mason and that is the plan.  In the NICU they will put Mason in a sterile bag up to his armpits.  This is done to protect from infection because his back is open to the spine.  He’ll have a heart monitor on and an IV started.
2. Will I be able to hold Mason at all before transfer?  No.  Neither will Jason.  It is all to protect from infection or injury to the spine/nerves and was what I suspected.
3. Will I see Mason other than that moment in the delivery room before they move him to the other hospital?  Yes.  After I’m sewn up and finish my time in the recovery room they will literally wheel my bed into the NICU to be with Mason for a little while.  Then I’ll be taken to my room.  When the transport team gets Mason into his special travel isolette for transfer to the other hospital they will bring him to me to say goodbye.  Jason will have been with him through all of this and Jason will follow him at transfer to go stay with him in the Children’s Hospital NICU and through surgery.  I’ll stay at my delivery hospital.
4. How can we get breastfeeding going with me and baby separated for days and Mason unable to be held for a few days after surgery?  Pumping.  Lots of pumping.  I’ll be honest, this is not something I planned on attempting, we’ve breastfed in the past with lots of issues (some are hormone based on my side).  However I feel really strongly that at least in the beginning we need to be nursing, or pumping and feeding it to him as the case may be.  There are lactations consultants and great pumps to help me at both hospitals for the duration, so that’s a plus.

We also toured the NICU there.

Now we wait.  And pray.  We have 2 1/2 weeks until delivery.  We’re praying for Mason to turn into a normal position for delivery and that his lungs mature well. 

He’s almost here!

Dumb OB and the Dreaded Hydrocephalus

Today was ultrasound day, as well as meeting an OB at the hospital where I’ll deliver.  It’s a bit of a long story, and there are updates and changes in Mason’s status, so read on to learn all about it!

First I went to meet the OB who is likely to perform my C-section.  Ahem, I can tell you right now she won’t be the doctor doing my surgery.  First, the clinic was late so they had to call upstairs and tell my perinatologist and ultrasound that I would be late to their appointment.  Then when the OB came in to talk to me and check me out she had no clue about my situation.  She knew Mason has SB, but she thought I was just having a vaginal delivery. 

She tried to tell me I didn’t know what I was talking about (that we would need a C-section).  Ha!  Don’t even go there lady.  We got that cleared up - I have to have a C-section because Mason’s opening on his back is so high and big that the only way to protect it from further damage is to deliver without him being squeezed through the birth canal. 

She then proceeded to explain that we would just plan to deliver a week before my due date and that I really didn’t need to have more ultrasounds.  “His spina bifida isn’t going to change, so you don’t need to keep looking at it,” was her reasoning.  WRONG again.  We’re not checking his SB in the ultrasounds, we’re watching for hydrocephalus to begin (fluid backing up in the brain, swelling).  That can change right up to delivery.  Dumb lady.   

So after all that I finally get to go up to Maternal Fetal Medicine and wait for them to fit me in for my ultrasound now that I was 40 minutes late thanks to the OB.  They got me in with an ultrasound lady who had not seen me before.  Can I just say here folks that it’s important to know your history and what questions to ask?  She and a student did my scans.  I saw on the scans of Mason’s brain some changes and when she didn’t bring them up I did. 

ME: “Have his ventricles started backing up with fluid?  They look a lot different than 4 weeks ago.”

Ultrasound Lady: “Um, I don’t know.  They do look a bit big but it could be normal.  I guess I should go look at your last measurements and let the perinatologist know.”

Duh.  Why take measurements if you’re not going to use them?

A few minutes later in comes one of the perinatologists I’ve seen before, one I like because he knows all about SB and the issues we’re looking at.  Dr. M confirmed what I thought. Mason has begun to develop hydrocephalus.  This is NOT good.  It’s not totally unexpected but we had hoped it would not happen this soon. 

Basically, we’ll have to monitor how fast the fluid backs up and choose a delivery date that lets Mason get as close to full term as we can without jeopardizing his brain with too much swelling.  We’re probably looking at a premature delivery unless God intervenes.  Right now we go back in 3 weeks.  Instead of our goal being January our goal is just 36 weeks.  Every day counts at this point.  Every day closer to 36 weeks means more maturity and a healthier start for Mason.

If his fluid has increased like it did this last time we’ll be having a December baby.  He’ll be premature.  He may not be able to breath on his own.  And within 48 hours he’ll undergo a double surgery – closing up his back/spine plus brain surgery to place a permanent shunt to drain the extra fluid. 

Oh, and lest things be easy, there’s another wrench in the works.  This week Mason decided to turn breech.  While that does not usually matter if you’re doing a c-section, in Mason’s case it does.  His head is up by my ribs, his butt, legs, and back are not.  In a typical c-section the doctor cuts your skin horizontally down near your pubic bone AND cuts your uterus horizontally.  If Mason is breech that would mean they would be grabbing and pulling right on his back and open spine.  Not safe. 

To avoid that if Mason stays breech the incision in my uterus itself will be vertical, to give them more room to get him out and other places on his body to grab onto.  A vertical incision means I can never again go into labor.  All other pregnancies must end in a c-section to avoid a very real possibility of uterine rupture, which often ends in a dead baby and possibly a dead mommy. 

The good news is everything else looks great.  Mason is growing on target, we could see him practicing his breathing on ultrasound, and he’s still got some time before we’ll be forced into delivery by the hydrocephalus.

Other good news – my perinatologist heard my frustrations with the OB and offered to put me on his delivery list.  In other words, someone who really knows what he’s doing and has delivered other babies with SB will deliver my baby unless something crazy happens.  He even gave me his email and phone number if we need to reach him at off hours (like if I go into labor).

How I’m Feeling:

Physically I’m hurting.  I knew Mason had turned breech before I went in because the last three days I’ve been in pain from his new position.  It’s a mix of back pain and sciatic nerve pain.  It’s not my favorite part of pregnancy but it’s manageable.  One blessing from the breech position was they could get a really good look at the ventricles in his brain today, which is important in measuring his fluid backup.

Emotionally I’m still in a bit of a shock.  Having a baby in three weeks is not something I want but it is a big possibility now.  Having a premature baby is now the most likely scenario.  That means so many things will be harder – his recovery from surgeries, breathing(he probably won’t be able to breath on his own), how long he’ll be in the hospital.  My recovery will be harder if he stays breech too, a vertical incision heals slower.  I was really hoping we could avoid hydrocephalus until after he was born, but God’s got a different plan.

I’m crying if I think about it too much.  It’s getting so close and there is no way to be ready for something like this.  There are so many things I would not have chosen in this path God put us on.  And yet there is still peace.  I know Mason’s life is exactly what God has planned and that none of these developments are taking Him by surprise.  I may be the last one to know the plan, but in all honesty I don’t need to know the plan I just need to let God take care of the details. 

Pictures of Mason’s Face, Foot, and Back

I got another peek at Mason today via level II ultrasound.  As a matter of fact I also had 3D and 4D ultrasound today, which accounts for some of these orange pictures.  The first picture above is his face, of course.  Mason is measuring right where he should at 2lb 5oz, 28 weeks tomorrow.  It’s a huge blessing!  This picture is in 2D and shows one of his legs from the front of the shin, with the foot, which you can clearly see is twisted.  That is, I believe, the bottom of his foot – aren’t his toes cute??? It’s called clubfoot.  Both his feet are like this.

Let’s see if I can explain this picture right.  You’re looking at Mason’s back.  The zipper coming from the right to left is his spine/vertebrae from mid-back with some ribs (on right) toward his butt (on left).  As you get toward the left you see a hole.  The zipper looks like it is open.  This is his myelomeningocele, the place where his vertebrae did not close properly, the place where his spinal cord and nerves are sticking out of his back.  For reference it begins about two vertebrae below his bottom rib, so the lower part of the middle of his back.  Go ahead, find your bottom rib to see where I’m talking about.  This is fairly high, and the higher the opening (lesion) is, the more Mason will be affected.

The next picture is in 3D again.  Remember how I said Mason’s spinal cord and nerves are sticking out that hole in his spinal column?  At this point they are in a sac (spinal sac/durum possibly with some skin stretched over it, the doctors can’t tell on that part).  Look for the arrows in the picture below, they’re pointing out that sac:

It’s amazing to see him moving and growing but always a bit nerve-wracking as well.  You see, one big purpose to these frequent ultrasounds is to check the ventricles (spaces) in Mason’s head for a backing up of fluid.  This back up and the resulting swelling in the brain is called hydrocephalus and as you can imagine it’s a bad thing to find.  The only way to help Mason once hydrocephalus has begun is to deliver him and then put a shunt in his brain. So far Mason does not have hydrocephalus.

What’s a shunt?  Basically it’s a valve that has tubes leading into the ventricles in the brain and away from it.  When the pressure rises the valve opens and the tubing drains fluid from the ventricles into Mason’s chest or abdominal cavity, which can absorb fluid and get rid of it, unlike the skull/brain. 

Mason has a 90% or greater chance of developing hydrocephalus.  The reason is simple.  As his spinal cord and brain developed with the cord sticking out of his back the brain grew in the rear of his skull and down into the cervical vertebrae.  That shifted position makes it difficult for the spinal fluid to circulate easily around and through his brain and spinal column.  There is a 90% chance that this will make fluid back up in the skull, putting pressure on his brain. 

Right now our prayer is that if Mason does develop hydrocephalis it will be after January 1st, when he is considered full term.  We do not want to add prematurity issues to the surgeries he’s facing at birth.  His due date is not until 3 weeks later and in an ideal world he’ll not develop hydrocephalus until after birth.  The bigger and stronger he is at birth the smoother his surgery to close his back will go and the better his recovery will be. 

How am I doing?  Pretty well I suppose.  Pregnancy-wise things seem to be going normally, with average weight gain, no major aches and pains yet, and a generally healthy progression.  Emotionally and mentally I feel good most days.  I struggle to picture what life is going to be like in those first weeks in the NICU.  I just can’t imagine it, no matter how much I learn about what to expect.  I am continually turning over my worries to God, then taking them back again, and so on. 

Through it all there is still peace.  I am still thrilled to be pregnant with Mason, to be preparing to welcome this son into my family.  I don’t know all the details, but that’s okay.  I can’t wait to see him, to hold him, and to tell him all about how much he is loved.  He’ll be here before we know it.