Monthly Archives: December 2010

Lipomyelomeningocele Explained

Lipomyelomeningocele is an abnormal fat accumulation that extends from the spinal cord into the tissue of the back. The spinal cord may or may not extend out through the spine. The lesion is covered by skin and usually found in the lower spine area. It is not painful. These lesions typically need to be repaired, however surgery can usually be delayed until the infant is several months of age. Most infants born with lipomyelomeningocele will not have hydrocephalus and will not need a shunt. Most patients will have near normal leg function but may have bladder and bowel difficulties. Some children will need additional surgery as they grow due to thethered spinal cord.          – courtesy Dept. of Neurosurgery Univ. of Fl.

 

This is what it looks like:

On the left is a view of the lipo, all you see from the outside is the fatty lump on the back.

But what’s really going on is shown in the center drawing, compared to the normal spine drawing on the right.

Here’s an actual picture, not of Lil Bit, but this is basically what it looked like:

See? It just looks like a fatty lump.

 

The Face of Spina Bifida

*warning* this post not for sensitive viewers

 

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This is the face of Spina Bifida Lipomyelomeningocele Occulta:

This, is the face of Spina Bifida:

This, is the face of Spina Bifida:

And though we don’t want to think about it…

..this too, is the face of Spina Bifida.

This is after Lil Bit’s second time under. Her wound was draining too heavily so they went back in along the same incision, opened it up and did a wound cleanse and inserted another drain.

And believe it or not, this looks good.  It looks much different than it did the first time and this looks *good*.

This is the scary part.  The ugly part.  But also the necessary part.  Necessary if I want to extend any hope to my little girl.

So we endure this, for the sake of….

This Surreal Time

This week has been rather surreal.  The birth of my baby.  My second girl.  My 7th homebirth.  My 7th child.

Wow. What a wonderful, blessed time.

Which seemed to all come crashing down mid-week with doctor visits and diagnosis.

It’s been a wild ride, one that has only just begun.

But I know who’s in control of this ride and I’m ok.  There’s a reason for this.  I haven’t a clue just what it is, but He does, and I’m ok with that.

The thing is, I know we will encounter folks along the way who think we made the wrong decisions.  People who are ignorant, in the true sense of the word – without facts/knowledge and want to blame our non-mainstream beliefs for the condition of my child.

But those people are wrong.  That’s all there is to it.

They may say “If you’d had proper prenatal care this wouldn’t have happened”  Sorry to say, prenatal care has nothing to do with this condition.  No amount of care would have prevented this. No amount of peeing in that little cup would have prevented my baby from being born with spina bifida.  No amount of leafy greens.  No magic number of apples.  Nothing.

“If you’d had proper prenatal care and an ultrasound, you would have known” Yeah, so, and then what?  They only do in utero surgery occasionally, that is not common occurrence.  And even at that, really, TWO surgeries is ideal? I think not.

Or option two: I would have known and could have opted to end this precious life.  This blessing from the Lord.  That’s not gonna happen.

So, would the ultrasound have prepared me?  To an extent.  But then I still would have seen her, in the flesh, in my arms.  Beautiful, precious, tiny, breathing, real.  And then have seen the swelling, in the flesh, and would have been taken aback all over again.

And then we would have gone to a doctor who would run us through the same gammut of tests and these same emotions would have run amuck.  We’d still be on this road.  This surreal and seemingly lonely road.

“If you’d had the baby in the hospital they would have known right away” Yeah, so? What does that change? I’d still be on the same road.  Only they would have wisked my newborn baby out of my arms, run all these tests as an emergency, without me.  It could have been several hours before I got to see her or hold her again.

Or, having had an ultrasound that showed it..which, there’s no guarantee one would have, but IF the ultrasound did reveal the cyst…the doctors/hospital may not have let me birth her vaginally.  Forcing me into a c-section. Repeat above scenario of child being ripped from me, taken away for an indefinite period of time, interrupting our bonding time, our nursing time, quite possibly killing that whole interaction, that whole relationship that is so important for her development.

Could I have chosen a different route? Yes.  But I’d be on this same road.  I’d still be right here, in this hospital room with a baby with spina bifida.  Nothing would have changed that outcome, but God alone.

So I am confident in my choice to stay on MY path.  The path my family previously decided to use.  The one less traveled. The one off the beaten path.  The one without lots of assistance.  The one laid before us by God.

He may not lay a similar path before you, and that’s ok.  But this is what He has laid before us, we have chosen to obey and follow Him, wherever that may lead.  We are confident, we are comfortable and we are blessed.

We have 7 children. Seven beautiful children.  One just happens to have spina bifida.  Just as one of yours may have autism, or diabetes, or a freckle on their right pinky toe. Our choices in prenatal care or life in general did not determine these things in our children…God did.  And I don’t know about you, but I’m ok with that.  He knows a hell of a lot better than I do what’s best for me and mine.  He has a plan.  And we all know He doesn’t reveal that plan too many pages at a time, often times, it’s only word by word.  So, I will take this plan of His, each word as I receive it and I will keep on. Trusting in His sovereign plan.  Loving my babies, all 7 of them.

She Has What?

We’ve been watching the swelling on her back.  There have been no changes.  She doesn’t appear to be bothered by it, no pain or sensitivity. We plan to have it checked by a doctor, but first we will hear from our chiropractor when we go in Tuesday.

Tuesday comes and we visit the chiropractor for our post birth adjustments.  She checks out the baby and shows concern. Possible spina bifida. It may not be, but she’s not the one to make that call.  It’s enough to concern her, she encourages us to see a doctor, as I said, we planned to do anyway.  She gives us the number to a doctor an hour away as he is known for his acceptance of home birthing.  That’s hard to find in this state.  And we knew that if we *did* get an official diagnosis of Spina Bifida, well, we wanted a good, understanding doctor on our side, to rally for us, to tell the rest of the medical community we would encounter that we are *not* freaks. That we are trustworthy parents whose child just happens to have a neural tube defect, it doesn’t reflect upon our parenting practices. So we got his number and made a call, got an appointment for the next morning.

Wednesday morning comes and we make the hour trek to this new doctor. We wait in the office for.ev.er! We finally get in to see him and he also is concerned.  This is when it starts to hit me, this is something, this isn’t just a fatty mass or swelling, there’s something *wrong* with my baby.  Something big wrong.  Something potentially very seriously and long lasting *wrong*.

The doctor is great.  Very genuine and caring.  He comforts and reassures us.  He makes several calls to Children’s Hospital to get us set up for further testing.  He takes pictures and video with his phone to send to them.  They say to send us directly there.  The doctor prays with us before we leave.  Then as we’re loading into the van he comes rushing out the front door to us. He had made another phone call to the hospital to get us direct admittance, he didn’t want us to have to go through ER with this otherwise perfectly healthy 3 day old baby.

So, directly to Children’s Hospital admitting we went. To NICU we went.  NICU is awful.  They were great and worked with us, but still it was awful as we couldn’t just stay there.  She had to be hooked up to monitors and we couldn’t just room in with her.  And we had to leave at shift changes, which was 2 – 2hr periods and 1 – 3 hr period.  This left us without a place to go.  This left us sleeping in the van for 1.5 hr at a time the first night.

Lil Bit gets an MRI, we wait on results.  And wait, and wait… They *are* great though that even during shift changes when we are supposed to be out, if Lil Bit was nursing they just closed the curtain and ‘ignored the fact’ basically and let us finish before kicking us to the curb.  Then, once out, and Lil Bit was sleeping, if she woke up before visiting hours resumed, they would call and tell us so we could come in for her to nurse.  So, I really can’t complain much, just, NICU in general was a miserable experience.  That come and go and no place to rest thing was very taxing.  We still wait on results.  By now we’re thinking, ok, yeah, it must be bad.

Thursday we finally get results.  We meet with the neurosurgeon. *The* neurosurgeon and one of *the* leading authorities in neural tube defects.

We are taken to another area of the hospital and sit down in a meeting room with a long board table.  A laptop is at the ready and a large screen faces us on one wall.  The doctor comes in and tells us…our baby has Spina Bifida.  Spina Bifida Lipomyelomeningocele Occulta, to be exact.

What does that mean?  Well, he proceeds to explain in a very matter of fact, professor-like attitude.  That part he’s good with, that’s his element.  He may not have another person’s ideal bedside manner, but he was perfect for us.  Very straight forward, give us the facts, but not in a completely cold, unsympathetic way.  He was just rather thorough in his explanations and answering the questions we should ask.  His method was “Now, Dr. Oakes, what does…mean?” and he would answer. Then “But Dr. Oakes, you said…” and proceed to answer.

In the end, he told us what the diagnosis was as well as our options.  Surgery, or not. And he again put things simply, it was our choice, hope or no hope.

Without surgery, natural history has proven there *will* be a deterioration of function.  Could be within weeks, could be years, but it *would* happen.  It could progress rapidly, or could go more slowly, but, it *would* happen.  And as our child got older, she would be in more and more pain.  By the time she was an adult, by observing natural history of this condition, it was certain she would be dealing with constant pain.

With surgery, there was hope.  Hope that deterioration would be stopped.  Hope that there would be no further damage.  Hope for a mostly ‘normal’ life. Hope of full recovery.  It wasn’t certain, but it gave *hope*.

Our faith is in God.  We chose *hope*.  We had to do what we thought was going to be best in the long run for our baby girl.  With this option of hope and healing available, how could we ignore that and let things run their course.  To let natural history take another.

It was a long, tiring, emotional night after that.

Lipomyelomeningocele Occulta, that name is longer than my baby.

Then began further processing and realization of what this meant.

We’re people who don’t immerse ourselves within the medical realm.  We’re rather hands off.  We’re not anti-doctor, we just think they have their proper place…as fixer.  A pregnant woman isn’t broken, don’t try to ‘fix’ her.  A well baby isn’t broken, don’t try to ‘fix’ him. Labor is not a major surgery, let it be. If and when we *need* a doctor, we will go to one.  But we do not need one in order to live healthily.

Now, here we were, fully immersed in this medical realm.  Very overwhelming and frightening as we try to not compromise our stance, but realize certain things *are* needed. So every little thing that comes about is met with minor resistance from us.  We ask that everything be explained, we ask what can be postponed and what can be done away with completely.  Everyone was great at answering our questions and working with us.  Several things were completely ignored, others were postponed, while still others were rearranged.  It actually went rather smoothly.  Everyone was nice and understanding, accepting of our position.  Never once condescending or accusatory.

We were soon invaded by a plethora of medical professions. Neurosurgeons, urologists, physical therapists…

It was very overwhelming.  A huge dump of intense information. The thing about such a diagnosis is you are given the here and now as well as the future all at once.  Everything just dumped at once. Too much to process in too short a time.

My newborn baby girl was facing surgery.  We were facing much time in the hospital. We were given a private room, no more NICU! We moved across the wing into a room with a couch/bed with a trundle, chairs and a bathroom. Hubs went back to the house to get our things for the next several days. I…just hit my face to the pillow and wept.  I was tired, I was weary, I was on information overload.  I hadn’t a thing left in me.

I had been praying all along.  I had prepared myself for the worst, surgery. But the ‘everything else’ of the matter was more than I could take. Yes I was still concerned for the surgery, but honestly, that wasn’t what did me in.  It was just….everything. Thinking about what this condition meant for her future.  For our future.  What was our life going to be like now? What *was* she going to be able to do? What limitations and problems *will* she have?  How will we deal with that? This was a whole new world and I was finding it to be quite scary.

We had friends, church family coming in for visits, offering support.  We had people all around the world praying for us.  I had strength again.  I was able to let go of  ‘tomorrow’ and just work on today. And that’s how we continue to get along, day by day.

Birth Story

To make a short story even shorter….ok, so, if you know me, already read my blogs, you know I don’t do ‘short’ well. 😉

 

39 weeks. I’m feeling d.o.n.e. DONE. Pelvic discomfort about to knock me out for the count. Been praying the baby would come soon in hopes of relieving that.

 

As with my last couple pregnancies, no real lead in to labor.  Very few, minor, sporadic contractions in the last weeks. Nothing ever enough to make ya think ‘oh labor’.  Heck, half the time I wouldn’t have even admitted it was a contraction.

 

Spent the week working on Doodle’s 7th bday cake.  Saturday 12.11 hubs and the big boys are off at a wrestling tournament, per usual for this season.  The 3 little freaks hung out with me.  We tied the house a bit, I ransacked the boys’ bedroom as I went to find a couple of library books.  Then we went to the library.

 

Home to snag some lunch and just chill.  Babysitter was originally due around 3-ish as hubs had a Christmas party to attend that started at 4.  Talked to him and he said we’d just be going to the party later.  Okee doke.

 

Later comes, I call the babysitter, hubs comes home and we’re on our way.  We hang out and have a good time with some new folks.  I’m the ‘freak’ because I have more than 2 kids..and I have them at home. :~p

 

Party winds down, we drive home in the rain.

 

Enter the house, chit chat with the babysitter for a few minutes then just as she is about to leave…um….did what I think happen just really happen?

 

I go to the bathroom.  Um, yeah.  Water broke.  Not a single contraction.

 

Carry on dismissing babysitter..for about another minute..then I’m back to the bathroom.  Slightly bigger gush.  I tell hubs as babysitter is juuuust walking out the door.

 

I just lie down to rest.  Who knows what’s going to happen from here.  I mean, some folks water breaks long before labor really ensues.  So, again, I don’t really know what to think, what’s going on.  I just relax, rest, watch some tv.

 

Every once in a while a small contraction comes, but it’s all quite minor.

 

Until about midnight when things seem to pick up, things get a little on the uncomfortable side.  I’m getting tired of getting up to go to the bathroom a hundred times..so I just stay in there for a bit, see what that position does for contractions.  I have a couple more.

 

Then I walk around the room a bit, just to see what that would do.

 

I’m getting slightly more intense contractions by now, but still not unbearable.  But I’m tired. I let hubs just sleep once we got home and there were no immediate contractions.  He’s been fighting a cold and had an early start to the day.  I didn’t need him yet.  Let him sleep so he’d be *there* when I needed him. 😉  But…*I* was now getting tired.  Weary.  I had been praying.  Praying for strength, comfort, quick, easy, uncomplicated, safe, painless birth.

 

I was having some back labor.  I was really getting worn out.  I began to pray He would speed things along.  “Please Lord, pick up the pace, give me my second wind and move us on, I am so weary.  I do not want to shut down now, I do not want to lose it. I just want to move forward.  Let’s go.”

 

Then I began to feel a tad pushy.  I woke up Brad, telling him I wasn’t sure I was *there* yet but, closer.  I then asked him to pray, silently (I didn’t want any ‘noise’ now, I had done this all on my own, in quiet thus far, I liked that) for continued strength and courage and that things would move along now.

 

A few more contractions, more pushy feeling.  Oh how tired I am.  Not so much physically tired, I guess more mental, just….weary and fading.  I pray again, asking for things to move along, more specifically this time. “Lord, please, I am so weary right now, so worn down, please, 2 more contractions and then pushing?”

 

Sure enough. Two more contractions and I was very much pushing.  Now I’m reminding myself even more..we’re there, we’re there..soon I will have a baby in my arms!  Oooh this is the hard part.  This is that part where it all comes to a head and I want to scream, not so much from pain but from exhaustion, emotion, a little fear.

 

One pretty hefty push and I feel bulging, the head was nearly there as I reached down. Back in as I catch my breath and await another contraction.  That soon comes and the baby’s head is out.  I collapse over the end of my bed, in relief.  One just never knows how long you’re going to be IN that pushing stage, so even though I had started pushing, I was still a little ‘worried’.

 

Then another contraction and out slid baby, into daddy’s hands.

 

She pinks up and squeaks right away.  A few little slobbery/gurgly sounds that quickly go away.  She looks tiny.  She’s yet to be weighed.  I put that job on hubs. Um, yeah. 😉

 

I kneel on the floor for a while, trying to find the right position to sit and chill, hold her, let her try to latch on.  It just wasn’t happening.  Pelvis didn’t immediately heal 😉  So I kneel, holding her a while, then putting her on the floor as I readjust.  Daddy holds her a bit then hands her back.

 

Soon the placenta is delivered making adjustment a bit easier.  Then we settle into bed and she latches on…strong!  She nursed a while and slept a while on daddy and then later she slept on my chest.

 

She’s a finger/thumb sucker just like her sister was early on.  How funny is that?  My boys never did any such thing.  But both the girls are after their digits within moments of birth.

 

She has a ‘swelling’ on her back.  It looks to be a fatty deposit that will likely go away on its own, according to our research.  It doesn’t appear to bother her or indicate that anything is wrong.  But if you would pray regarding it nonetheless, I would appreciate it.

 

Now all the kids have been up to see her.  The girl is just beside herself. Warrior is..well..wild man Warrior “oh…baby” is about all ya get out of him.  Boo is now warming up to the idea.  At first he seemed quite disinterested, but as I type he lies on his belly, looking at the baby as she lies and squirms on daddy’s chest.  He reaches out to touch her fingers, smiling at her. The boys have all come and oohed and aahed then let us be.

 

So, another ‘different’, quick labor. 3.5 hr from water breaking to birth.  All is well, I just still await full use of my legs..as they’ve been difficult since this pelvic issue started. :~p