One Year Old Mason!

A year goes by much faster than you expect.  A year ago today Mason took his first breath.  This sweet baby was born with his spinal cord sticking out of his back, feet twisted, excess fluid on his misshapen brain.  He had his first surgery before he turned 8 hours old.  You can see a lot more pictures in this post I did from the NICU and read the details of those very first days.  In one year my son has grown into a spunky little man.  He has made it through six brain surgeries and more tests than I’ve had in my life.  When I look back to the time in his pregnancy when we learned of Mason’s spina bifida I remember how worried I was.  I remember the grim prognosis with words like paraplegic, mental retardation, and brain damage thrown at us.  The doctors didn’t know what would happen.  They didn’t know how Mason would change our lives.  If I could go back and tell the doctors about Mason I would say so many things.

That Mason would be a fighter.  That he would take being a paraplegic in stride because spina bifida does not define who he is.  That he is a determined little man who does things his own way, and that walking is not essential to happiness.  Braces, wheelchair – these are not dirty words, they are wonderful tools Mason will use to get where he wants to go. 

That our lives did change – for the better.  We have learned from his joyful spirit to embrace every day, to meet challenges head on, to never give up.  We have a child who loves wholeheartedly, who laughs, and who we couldn’t imagine our lives without.

That the baby that they said might be brain damaged is just a normal, brilliant boy who is already coming up with ways to get into trouble just like his older siblings did at his age.  He’s creative, playful, and opinionated. 

That his life is worthwhile.

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 9: How Diagnosis Affected Pregnancy

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

Today I want to share a little of how that diagnosis of Spina bifida changed my pregnancy.  In the first month after diagnosis I was in a constant state of information overload.  We met with doctors, toured a children’s hospital and NICU, and tried to process things.  I researched things on the internet (something I really don’t recommend!) and thank heavens I stumbled across and international forum for those who have or are raising someone with Spina Bifida.  It was so encouraging to get real life information and see pictures of children who had SB.  That place is Spina Bifida Connection and I’m even more active there now that we’re living with SB in day to day life.

Here is some early journaling from that first month that shows another way diagnosis affected me during pregnancy:

“It's also been a great reminder of what matters most. So many times before during a pregnancy I've said "I don't care what the baby is, just so long as it's healthy." Admit it, you’ve said it too, haven’t you? Now that we're faced with a baby who is not healthy I see just how limited my view was. We're thrilled to have Mason and it doesn't matter that he'll be bringing health issues out of the womb. His life is precious, healthy, sick, or otherwise.”

It was a true perspective changer for me.  Mason was loved and valued because he was a child of God, as every baby should be loved and valued.  It did not make the worries go away, but everything was worth it for the sweet child growing as well as he could in my womb.

I wish I could go back and hug my hormonal, pregnant self who was worried about what was coming.  I would tell myself that the pregnancy is the hardest part.  I know that sounds backwards, that actually having a child with disabilities would be harder than the pregnancy.  During pregnancy all you can do is wait and pray and worry.  There are few answers beyond ‘wait and see’.  And that doesn’t really change once the baby is born, but there is one significant difference – you can finally see, touch, hold, and comfort your baby.  The worries do not magically disappear and in many ways life gets busier and more complicated once the baby is born.  But being able to touch Mason made everything easier.  Meeting him and getting to know his personality, seeing the joyful spirit he has, it made everything easier.

There is more to say about how diagnosis changed my pregnancy but I’ll stop here for today.  Come back tomorrow to learn more!

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?

Healing Continues–To Those Who Hear the Diagnosis Spina Bifida

I was thinking back to when we first learned Mason would be born with Spina bifida, clubfeet, and other issues.  I had so many worries and fears, there were so many unknowns.  I share Mason’s journey with spina bifida because I want others who face that diagnosis to have hope.  If you are here because you’ve heard the same diagnosis please keep reading – I have more things to tell you at the end of this post.

We are still in that phase where Mason wears his foot brace for his clubfeet 23 hours a day.  It means we pack as many fun things into his one hour free as we can.  He was playing with Daddy here between getting clothes changed.  He really wanted to be on his back and got as far as he could:Remember, Mason is a parapalegic, he has no real use of his legs.  That leg is just hanging there holding him from rolling the rest of the way to his back, he’s not yet strong enough to swing/drag it over using his upper body strength, but he’s trying.  This is the point where we grab his hip and support the weight of the leg so he can finish rolling to his back.

Today I finally remembered to take updated pictures of his scars as well. Here you see Mason’s belly scar, or more likely you don’t see it.  This one healed really well and is one of the incisions from getting the shunt in his brain to relieve fluid buildup. It’s the lower end of the drainage tube and they cut his belly open to get it into the right spot after threading it down his neck and chest on the inside of his body.Here is the scar on his head where the shunt was placed.  It is a relatively crescent shaped scar and will be well hidden by his hair when it finally thickens up.Last is the scar on Mason’s back.  This one has done remarkably well and we hope that it continues to smooth out those flaps on either end as he grows, while stretching in the middle as needed.  It has come a long way from the open back with spinal cord showing: and the angry newly closed skin: God’s creations are truly amazing.  Healing and growth come with time. I remember crying over how awful those first pictures were, that reality of a body created with incomplete vertebrae where you could literally see his insides from the outside.  I remember seeing his poor sewed up back and feeling sad that he had been through surgery before he was even a day old.  I was grateful it could be done, but it was still hard to see.     Five months have come and gone since that first day.  Five glorious, stressful, inspiring, exhausting months full of ups, downs, and unexpected paths.  Mason is a joy and delight.  I love seeing his inquisitive little face as he explores the world!  He came to earth in a body with physical challenges but look in those eyes and you can feel his strong spirit.  He radiates love and happiness.

To those who stumble across this blog having learned their child is coming to earth with spina bifida – look long and hard at my son.  He has a severe case of spina bifida.  Many children with spina bifida have more use of their legs and more sensation in their lower body.  Please do not listen to a medical establishment if they say a child with spina bifida automatically has mental disabilities and will be, in essence, a vegetable whose life is not worth living.  They are wrong. 

They will offer to murder your child for you.  Oh, they don’t call it that.  They sanitize it and call it abortion, and the baby who can already suck it’s thumb and listen to your voice while in your womb they de-humanize by calling a ‘fetus’.  Unthinkably, more than 60 percent of you will blindly accept murder.  You will not look past the diagnosis of Spina Bifida long enough to see the son or daughter in your womb.  You will lose the precious gift of a child whose life is worth living. 

Life with spina bifida will still be a life of joy.  Please trust me.  I would do this again in a heartbeat.  

Choose life!

Daily Bread–Enough for Today

Since I have some extra time I wanted to be sure and share something God sent my way Sunday.  You see, Sunday was a hard day emotionally.  I cried a lot and even blogged about it.  I prayed a lot.  I read my scriptures and then picked up this month’s Ensign magazine. 

And that’s when God spoke directly to me. 

I browsed a few articles and began to read Recognizing God’s Hand in Our Daily Blessings by Elder D. Todd Christofferson of the Quorum of the 12 Apostles.  After reminding readers of the example of prayer Christ gave in Luke 11:2-4 Elder Christofferson focuses in on the phrase “Give us this day our daily bread” he says:

“We all have needs each day for which we turn to our Heavenly Father. For some, it is quite literally bread—that is, the food needed to sustain life that day. It could also be spiritual and physical strength to deal with one more day of chronic illness or a painfully slow rehabilitation. In other cases it may be a less tangible need, such as something related to one’s obligations or activities that day—teaching a lesson or taking a test, for example.

Jesus teaches us, His disciples, that we should look to God each day for the bread—the help and sustenance—we require that particular day.”

I kept reading, still not really feeling deeply about the message, just reading.  He recites the time of Israel’s exodus and wandering in the wilderness where they quite literally depended upon the daily gift of manna for food.  He tells of personal experiences he and his family have had to rely daily for the Lord’s help.  Here is where God grabbed my attention:

“Asking God for our daily bread rather than our weekly, monthly, or yearly bread is also a way for us to focus on the smaller, more manageable bits of a problem . . . Sometimes all we can handle is one day—or even just part of one day—at a time.”

Here I was, overwhelmed and in tears yet again at the things coming ahead, when all God wanted me to do and all He was offering was enough strength, physical and emotional, to get through that day.  I remembered the scripture in Matthew 6:  “Take therefore no thought for the morrow: for the morrow shall take thought for the things of itself. Sufficient unto the day is the evil thereof.” 

I was overwhelmed because I lost my focus.  I can’t do anything about tomorrow in this situation.  God had my attention and to drive home his point the very next part of the article shared Elder Christofferson’s mother’s experience.  After a radical cancer surgery followed by painful radiation she told her mother one day:

‘Oh, Mother, I can’t stand having 16 more of those treatments.’

“She said, ‘Can you go today?’

“‘Yes.’

“‘Well, honey, that’s all you have to do today.’

I got the point.  God was right there helping me through that day.  It was my job to keep my focus on the day I was in, trusting Him for the daily bread I would need anew each morning.  I woke up this morning and remembered that lesson.  I prayed and asked God for help and strength to just get through today. 

Wouldn’t you know He wanted to be sure I had learned my lesson?  I mentioned briefly in this post that the morning at the hospital was eventful. Here’s what happened:

We arrive early for our amniocentesis to check on Mason’s lungs.  They draw the fluid out with a rather long needle and no numbing, hook me up to a monitor to see how the baby reacts while we wait for results, which will take an hour.  I also get a shot of Rhogam in my hip because of my blood type.  Oh joy.

Time passes and my nurse and surgeon come in.  The one and only machine in the entire hospital that can run the test on my amniotic fluid has broken.  Of course.  My fluid sample is being driven to another hospital in the city whose machine is working, where the test will take a full hour, once the sample gets there.  My c-section time is now getting bumped to around noon.

My husband and I go get two grandpas who are waiting patiently up by the NICU.  They’ve come to help Jason give Mason a priesthood blessing before he transfers to Children’s for surgery.  They’ve been there for a long time already.  We all go to the cafeteria to wait, me still not allowed to eat or drink because I’m having surgery in a few hours. 

We wait until after 11am then get a phone call to come see my doctor.  A walk across the hospital while the grandfathers head back up to their waiting room.  Then we find out the results – Mason’s lungs need more time and help to develop enough for a safe delivery.  C-section is cancelled, new plan in place: Steroid shots to develop Mason’s lungs and a new c-section date of Wednesday.  No amnio this time, just straight to surgery. 

Grandfathers get to go home.  Jason and I head back to the cafeteria and I get to eat while we wait for a special steroid shot to be readied.  When that is finally done I get the steroid shot in my other hip(ouch!), doctor’s orders on a slip for the hospital in my town to repeat the steroid shot tomorrow (saving me 2 hours of driving), and we head home. 

The neurosurgical team is notified that Mason won’t be here for a few days yet.  Ronald McDonald House reschedules our stay for the new delivery. 

See what I mean about an eventful morning???

However, unlike yesterday, I wasn’t distressed (disappointed, yes).  God gave me just enough daily bread to get through today with peace.  He gently reminded me Mason is coming in His time and at the right time.  Today.  That’s all He asks me to look at, to get through, and He is right there with me through every moment.

I am blessed.

Still Pregnant!

Well, after an eventful morning at the hospital we learned Mason will not be making an appearance today.  His lungs have not matured enough and so we’re doing a few days of steroid shots to mature them and plan to deliver midweek. 

It’s all in God’s plan, I know it’s for Mason’s best – now to just hang on a few more days.

Emotions On the Eve of Birth

Tomorrow, unless Mason’s fetal lung maturity test tells us otherwise, we will meet our son.  Delivery is expected to be in the morning.

Right now I’m such a mess of emotions.  I’m so excited to meet Mason and get our life raising this son started.  He has been loved from the moment we knew we were pregnant and even before that.  I can’t wait to see how he fits in with his 6 older siblings in looks and personality. 

I’m also in tears over this separated beginning we’ll start with.  For days we will be in different hospitals.  I’ll be on a floor full of new moms and babies, able to hear their babies cries no matter where I am, yet my arms will be empty.  My son will be miles away from me.  It’s breaking my heart. 

I know there are people who would like to visit me in the hospital, to keep me company.  To be honest I don’t want to sit there and pretend I’m okay.  I don’t want to smile and make small talk.  I don’t want company.  I want to focus on doing everything I can to get out of that hospital and to my son.  That means walking, eating, sleeping, and pumping. 

I know this is part of God’s plan.  I am so blessed to live in a time and place where Mason will be given the medical care he needs to survive.  I know this.  Forty or fifty years ago my son’s medical condition would have been a death sentence due to it’s severity.  And I’m grateful – oh so grateful – that God has sent Mason to our family. 

It still doesn’t make it any easier emotionally. 

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!

Panic and the Need for Control

Remember that this blog is not only a peek at our journey into the world of spina bifida?  It is a place to share the emotional side of it all too.  This will be one of those posts and some of you may just laugh at me.  I’m going to record it anyway because it happened. 

Today was a nice, normal day.  I had my final checkup with my regular midwife today before switching permanently to the high risk pregnancy clinic at the hospital where I’ll deliver.  I’m 35 weeks along today, measuring 37 weeks, dilated to 1cm, and weighing 211 lbs, a 16 pound gain for the pregnancy that officially has me weighing more than my 6’1” husband.  (I’m 5’5”.)  All of that was fine, didn’t make me bat an eye.

This afternoon I got a call from the hospital’s high risk clinic.  Next Thursday I see the Maternal Fetal Medicine doctors for our big ultrasound.  That is where we suspect we’ll be told it’s about time to deliver Mason, that his hydrocephalus requires an early delivery.  I’ve known that for two weeks. 

Well, the high risk clinic calls to set up a checkup for the Wednesday after that date, just in case things look good at our ultrasound.  I’m great with that. 

Then the lady on the phone says she needs to set up the next appointment.  A week after that, January 4th.  19 days from now.  It will begin with a fetal lung maturity test, she says.  That is an amniocentesis.  If you’re not familiar with that, imagine a needle about a foot long or longer being poked into my belly.  No, I’m not joking.  I knew something was up when she mentioned it, but I still wasn’t prepared for her next sentence.

“If that looks okay then you’ll have a C-section at 3:30 that afternoon.”

My heart just about stopped.  For some reason knowing in the abstract that next week I may need to have Mason wasn’t panic-inducing.  However having an official delivery date was.  I got off the phone and all of a sudden was terrified., worried, and ready to panic. 

Silly, isn’t it?  It may all be a moot point next week if delivery needs moved up even earlier.  Yet having an official date threw me for a loop.  I almost cried.  I’m not ready.  I’m not ready mentally for all of this, there are still things at home that need to be finished up. 

When my husband got home from work I told him the first thing on my to-do list tomorrow is to scrub down the refrigerator shelves.  He laughed at me. 

Oh admit it, you’re laughing too, aren’t you? 

For some reason it is those sorts of things that must be done in my mind.  When I have a bit of perspective I know my list has a lot of things that won’t be the end of the world if they’re left undone.  But all of a sudden I feel like I’m out of time and they must be done.  There is so little under my control right now, and that is only going to get worse once Mason is here, so I think that’s why I feel compelled to make a list of things that I can control and do them. 

Speaking of which, I’m off to make that list now.  Even if I know I’m being silly.  It will still make me feel better to have something to do while we wait for this final countdown to play out.

A Split Personality?

I think I am starting to get a split personality.  Most of the time our day runs along as normal doing homeschool, cleaning, playing, cooking.  Then there are moments when thoughts interrupt and I begin listing in my head things we need to get done, what I need to pack for the hospital, menus and lists to write and put in a folder here at home to keep things running, and so on.  The interruptions come at random times – I may be reading to the children, cooking, or even waking up in the middle of the night.  It’s almost funny and without paper to write it all down I would be feeling even more scattered. 

Today, for example, I added to my hospital stay list the following items:

• Pads for postpartum bleeding and a bottle of tylenol.
• Mason’s notebook for keeping track of doctors, medicines, and information.
• The charger for my cell phone.

I also remembered that I need to gather bill paying items (checkbook, stamps, envelopes) into a folder so that when bills come in they will get paid. 

Ah well, at least I’m thinking of these things now, while I’m home and can do something about them, right?

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. 

I can’t sleep

5:30am rolls around and I wake up to Mason doing baby gymnastics in my womb.  It’s early, but I don’t mind.  Every movement is precious.  I rub my belly and talk to him, enjoying the quiet time together.

By 6:00am Mason has settled back to sleep, but I have given up on sleeping any more today.  My mind has wandered, as it so often does, to that time in the hospital.  Random things nag at me, circling in my head with no answers. 

I do not want to have a c-section and I think I’ve figured out why.  It is because my body will no longer be under my control.  I will, for a few hours at least, be unable to walk no matter how much I want to, due to an epidural.  I will be recovering from major surgery.  That one thing will keep me from my son’s side for hours and ultimately days, which is nearly unbearable.  I don’t want this experience of letting someone take my baby away to care for him without me.  In my other births things have always been different.  Before the baby is taken to the nursery I am brought a wheelchair.  I go with my baby.  I am there to touch them, comfort them, hold them, and talk to them.  Mason won’t have that.  I won’t have that. 

I will spend my son’s first night, and probably his first several nights, laying in a bed in another hospital alone.  I won’t be with him.  I won’t have my baby snuggled up next to me during the sweet, sleepless hours when we should be sleeping but are awake instead.  He won’t be alone.  His daddy will go with him, stay with him at Children’s Hospital, but my arms will be empty.  The doctors expect me to sit in that hospital for days with nothing to do and no baby beside me just so they can monitor my recovery from surgery.  I am going to go insane. 

There are all the questions about surgery, about how Mason will do, about how he’ll recover.  And again, I won’t be with him for the first few days.  I want to be with him.  I want to be the one to talk to him, to comfort him, to hold him.  I want to smell his newborn scent and touch his soft skin in wonder.  I want to take care of him, to have the nurses show me what to do to care for his incision.

Once I am finally released from my hospital, or more likely, when I can stand waiting no longer and I sign myself out against medical advice, it is the smaller details that spin in my head.  Where will I get food when I spend all my time by Mason’s bedside?  There will be no grocery shopping for me, not that I would be up to it anyway.  I will need to shower, to deal with postpartum bleeding (you still have that after a C-Section, right?), to sleep.  My only plan right now is to do those things when I absolutely have to and when my husband is there to stay beside Mason. 

Right now the hardest part is just the waiting, the questions spinning in my head with no answers.  Once again I have to take captive my thoughts (2 Corinthians 10:5) and turn to God.  I have to trust Him.

“Look unto me in every thought; doubt not, fear not.”
                                           -  D&C 6:36

  I pray.  I read my scriptures.  I feel the ‘peace which passeth understanding’ and I know that the most powerful being in the universe is mindful of me.  I know that God is with me, that He knows my thoughts, my desires, and that not only will He be with me, He will be with Mason, even when I cannot be.

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.

Sweet Baby Picture Today–3D!

I got to see Mason today – it was ultrasound day!  Even better - the sonographer decided to try a 3D ultrasound to see if she could get a better picture of Mason’s spine.  That didn’t work out, but while she had the 3D ultrasound running she showed me around and gave me this sweet photo of Mason’s face, with a little fist in by his cheek. 

He was moving a lot, so it was hard to get good measurements today, but everything looks to be right on track with Mason weighing about 1 pound 5 ounces.  So far there he is not developing hydrocephalis (fluid backing up around the brain) which is wonderful.  The longer he can grow in my womb the better off he’ll be.

I met a second perinatologist today, chatted up what we could see on ultrasound, answered questions.  I got a bit of a laugh when he asked if this was my first boy.  The poor guy had obviously reviewed Mason’s information but not mine.  He about fell off his stool when I said Mason is my 5th boy.  Then I gleefully told him I have two girls at home as well.  He added it up out loud and then wanted to know how old my oldest was and if I had any multiples (twins).  “So you’ve pretty much been pregnant all the time for the last 10 years?” he asked.  “Yep.”  “Well it seems to work for you.”

My next 3 ultrasounds are now scheduled, and I’ll be meeting the neonatologist at the hospital who will be the one caring for Mason as soon as he is delivered (and up until he is transferred to Children’s for surgery).  All in all everything is going ‘normally’ outside of the spina bifida, chiari malformation and bilateral clubfeet, which is what we want.  The plan is to enjoy the next four weeks and then go check on Mason with another ultrasound, so I’m off to do just that!

A Small Dose of Normal

Very little of this journey is familiar or similar to my previous pregnancies, so I was thrilled to learn today that I can continue my basic prenatal care with my midwife until mid-December.  At that point I will switch to frequent appointments with the obstetrician who will deliver Mason in the big city.  I’ve had my midwife with every pregnancy and deliver to date (I’ve been seeing her for 11 years now!) and it will be nice to keep seeing her for most of this pregnancy. 

This Thursday I have my next level 2 ultrasound with the perinatologist.  I’ve got a list of questions ready for that visit and I look forward to seeing Mason again.  Yay!

Lessons We’re Learning

An online friend of mine asked how we’re doing and as I typed my answer I decided to share some of it here because it touches on the emotions and growth we’re seeing in our family through this situation.   We've learned a lot in a short amount of time and are trying to process it all, but so much of Mason's diagnosis involves "wait and see" for just what will be affected and to what degree.

It has been a wonderful experience for our family because our children are seeing that prayer can be specific, not just the general "little kid" prayers of thank you for this day, etc. It is humbling to hear my 3 year old pray 'that baby Mason will have time to grow in mommy's tummy' or my 10 year old to ask God's wisdom to guide the doctors who will take care of Mason.

It's also been a great reminder of what matters most. So many times before during a pregnancy I've said "I don't care what the baby is, just so long as it's healthy." Admit it, you’ve said it too, haven’t you?  Now that we're faced with a baby who is not healthy I see just how limited my view was. We're thrilled to have Mason and it doesn't matter that he'll be bringing health issues out of the womb.  His life is precious, healthy, sick, or otherwise.

I've also had several miscarriages before and while I thought I had treasured each moment of pregnancy, now I appreciate more each little nudge and movement, something I took for granted before. There is a difference in how much movement I'm feeling because Mason's legs are not fully functional, so even the little flutters are something to celebrate and pause what I'm doing to just enjoy.

God has been preparing us for this for a long time. I knew months and months ago, before I was pregnant, that something difficult was coming. We've been pushed to simplify, to pull back from activities like the Homeschool Crew and my job working for The Old Schoolhouse, so many things. And for so long I didn't know why. Then I got pregnant and thought I understood - life was going to be busy with a new baby when the 6th baby was just turning 1. Now I see even more is coming with Mason’s medical needs.

We understand so little! We have such a limited perspective, don't we? I'm sure there is so much I don't understand yet, so much I don't even see coming. I'm trying to focus on relationships and let God take care of the rest.  It’s a daily, sometimes hourly process.  It’s messy.  But God is there giving us peace every step of the way.

Learning More at Children’s Hospital

Yesterday we got to visit the children’s hospital where Mason will have surgery shortly after he is born.  My husband and I met with several people and came away with too much information to even process, but that’s okay.  We were able to get some questions answered and learned things along the way.  I thought I would share our visit so I don’t forget it.

First we met with Becky, the Fetal Diagnostics Coordinator.  She’s full of information and is one of our go to people if we have questions or need to set appointments between now and Mason’s birth.  She gave us a tour of Children’s.  We walked all over that hospital and went to a place I never wanted to go – the NICU, or Neonatal Intensive Care Unit.  Talk about overwhelming!  We walked between aisles and aisles of babies who are all very sick or very early or some combination of the two. 

I am grateful, don’t get me wrong.  Seeing how well-equipped each area was, the many monitors, nurses, video cameras, and more all right there to help was reassuring.  I just don’t want my baby to need to be there.  It breaks my momma heart that he won’t have the ‘being held every moment’ experience that the others started out with.   

We got to see a little guy who was being released that day who has Spina Bifida.  Honestly, that was a total blessing.  Spina Bifida is not super common, so our large childrens hospital only sees about 10-12 babies born with it each year.  We were able to talk with the nurse caring for this little guy, ask her questions, and even see the place on his back where he has been “put back together”.  While each child’s scar/closure will be different, it was nice to see one in person and know that at just 9 days out he was able to be laid on his back and was healing nicely. 

After the NICU we spent time talking with Becky and another hospital person who will be there for questions as needed.  Becky asked if we plan to stay at the Ronald McDonald house there beside the hospital.  I had not thought that would be possible as we only live an hour away, but we are in another county and so we can.  Yes!  Being a five minute walk through the hospital from my son or an hour plus drive in winter weather is pretty much a no-brainer.  While my husband will also spend some time at home with the other children, I will stay pretty much completely there.  Especially since I’ll be recovering from my own surgery (oh joy).  I won’t be any help at home with my six older children, they won’t be allowed to climb on mommy, and Mason really needs me more for that two week period.

Our next stop was an appointment with the pediatric neurosurgeon who will likely do Mason’s surgery on his back, as well as putting in a shunt if it is needed.  He was okay, but a bit annoying.  His outlook seemed to be, “You won’t know anything for sure until the baby is born, so there’s not much to say.  And your baby doesn’t have hydrocephalis yet (though he’s got a 90 percent chance of it and will require a shunt) so why talk about the shunt procedure either?”  Grr….  Thankfully I had a list of questions I wanted to ask, so I got those answered and we could move on. 

Our third appointment of the day was with a lady named Margaret.  She’s the Nurse Coordinator for the Myelomeningocele Clinic at Childrens.  She is the person who will help us coordinate care for Mason after we’re released from Children’s.  She’s our resource person for living the rest of our life, basically. 

I also like the way Children’s Myelo Clinic works.  Every Friday they have clinic and a doctor, therapist, or specialist for pretty much anything a spina bifida child could need will be there.  You show up in the morning and see whomever you need to over the course of a couple of hours.  YAY!  That means we’ve combined multiple doctors and practices into a single visit. 

So How Do I Feel Now?

We’ve known about Mason’s Spina Bifida for just over two weeks.  While some of the details overwhelm me at times, I’m doing pretty good.  I can say 100% that we are thrilled to be Mason’s parents and I can’t wait to meet my little man.  I already wonder who he’ll look like, and what combination of personalities he’ll have compared to the rest of his siblings.  I feel peace and I know that is all God’s blessing.  I’m praying more and feeling closer to Him than ever before because I really do have to just trust His plan. 

God Planned this Path

This week has been the beginning of a new journey for my family.  On August 30, 2011 at a routine 19 week ultrasound we learned that our seventh child is a boy.  We also learned he has Spina Bifida and club feet.  It was a shock, not something I had any experience with.  That evening I received a priesthood blessing.  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.  Our son’s name is Mason.

Two days later, on Thursday, my husband Jason and I went to Riverside Methodist Hospital for a high level ultrasound to confirm the diagnosis and see what we’re facing.  My dear mother stayed home with our six other children, ages 10, 6, 5, 3, 2, and 9 months.  To say it 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 today.  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, but that we were open to what the doctor felt was necessary to get the best picture of what Mason is facing. 

Next we were taken to our ultrasound.  The lady preforming 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.  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 some of 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”, and that was said along the lines of “I’m assuming you are very religious and not interested in terminating the pregnancy?”  I was grateful that he did not choose to pursue that line of discussion after our affirmation.  He also did not feel there was anything in the ultrasound indicating that we needed to do an amnio – hooray!

What we Know:

Mason has a condition called Spina Bifida Myelomeningocele.  As he was developing in the womb the spinal vertebrae in his lower back did not close and part of his spinal cord and nerves are coming out through this opening in his back.   We believe it begins between the L2 and L3 vertebrae.  This will affect several things, including his ability to walk and bladder/bowel control.  His feet are turning inward due to incorrect or inoperative nerve messages, also known as clubfoot.  He may learn to walk with assistance like braces or he may be in a wheelchair, we do not know yet.  The other major effect he will face due to the spina bifida is in his brain/skull.  The brain is a bit pulled to the back of his skull and so the flow of fluid around the brain is not as smooth as could be.  He will likely have Hydroencephalis, where fluid builds up around his brain due to the reduced flow, and will need a shunt surgically placed in his skull under the skin, with a tube under his skin draining off excess fluid.  There may be learning difficulties down the road (about a 20% chance).  When/if hydroencephalis begins in utero he will need delivered, which means he may be premature.  I will deliver via C-Section at Riverside Methodist Hospital.

Mason will require surgery within hours or a day of birth at another hospital to close the opening in his spine and to place a shunt in the skull.  We have yet to meet with the pediatric neurosurgeon to learn details of what that will involve.  Mason will be in Children's hospital's NICU for 1 1/2 to 2 weeks if everything goes perfectly.  If he’s born premature or has difficulties with surgery/recovery it could be longer.  He will likely require more surgeries as he grows.  The clubfeet are treatable to some degree, and again, we'll be talking with the neurosugeon about that as we go along.   

For the moment I will continue to have regular prenatal appointments in my home town AND High Level Ultrasounds monthly in the big sity to monitor things.  We will begin gathering a pediatric neurosugeon team and preparing for the changes that are coming.

What We're Grateful For:

Mason is an otherwise healthy little boy, and while his Spina Bifida and all that entails will be hard, he is going to live.  Many of the possibilities Mason could have had in combination with his Spina Bifida (genetic/chromosome) had an end result of very early death.  It seems that God has planned a path for our yet-to-be born son that will not be the easy, healthy one you always assume will come at birth.  The challenges he will face come from his physical body.  As we are learning more about the challenges we are clinging to the knowledge that this child is known by God and that the circumstances of his body are not an accident.  “Before I formed thee in the belly I knew thee; and before thou camest forth out of the womb I sanctified thee…” Jeremiah 1:5 

I plan to journal here the journey down this path.