Great expectations.

I went to Walgreens the other day and the lady at the checkout started telling me all about how I should enjoy this brief time that my baby isn't mobile because before long he'll be "getting into everything".  I smiled knowingly, having experienced the phenomenon four times over and thought to myself, "Lady, this kid getting into everything is the least of my concerns.  I'll be lucky if he has the physical capacity to get into everything."  It's strange to think that I'll have to experience parenthood in a completely different way, that instead of cheering my son on as he embarks on each new milestone, I'll be cringing inside, wondering which of the falls he takes while learning to walk will result in another break.  And that's if he learns to walk.

Though I don't fear what the future brings for Jack and us, I'd be lying if I said that raising a child with OI didn't cause me the least bit of anxiety.  What will our family activities and vacations look like? Who will be able to care for Jack so that Tim and I can go on dates, or so that I can teach art in my kids classrooms again?  What will preschool look like for Jack?  Will he attend the same cherished elementary my other kids have?  I could go on and on.

So many questions.  Not a lot of answers.  OI is so rare and so varied that there are few sources to which I can turn to see what sort of life Jack can anticipate.  It's a new thing for me, this "take it a day at a time" sort of mentality.  I'm a planner.  This is new, but absolutely doable.  So we're taking it a day at a time.  And doting on this sweet little boy who has graced our lives and filled our hearts with immeasurable love.

Borne our griefs and carried out sorrows.

Everyone has struggles.  Lately my mind has been reflecting on those challenges where people have to suffer largely in silence-a loved one with an addiction, a wayward child, a hidden illness...often the weight of these is just as difficult to bear and is exacerbated by the fact that there is no one to help shoulder its sometimes crushing weight.  They are left to bear them alone somewhat, as meals or rides or babysitting would fall short in lightening the load.

There's nothing private about our latest trial involving Jack.  In fact, it bordered on theatrical.  Consequently, the meals poured in, the prayers were sent heavenward and the offers of help constant.  Truly, we are surrounded by compassionate friends and neighbors.  Friends and neighbors whose afflictions are no less painful than ours.  

Each night when we gather for family prayer we ask a special blessing upon everyone who has helped us, that their burdens might be lifted as they have lifted ours.  I can't clean their houses, or make a grocery run, or offer to do their laundry as others have done for me.  But I can petition the One who suffered all things that he might succor us all in our afflictions.  He understands, and He makes burdens light in a way no one else can.

Even though.

Lily's morning prayer the other day, and I quote: "We're glad Jack came to our family, even though he couldn't breastfeed, and even though he broke his leg, and even though he has a disease, and even though he screams and mom doesn't get enough sleep."  Yep.  All true.

Straight to the source.

My baby screams a lot.  Like, a LOT.  Like any attentive mom, I go through all the steps: is he hungry?, check the diaper, does he need to burp?, is he tired?

I feed, swaddle, burp, kiss, change and rock this sweet child in an effort to calm his sensitive soul.  Sometimes he just plain won't stop crying.  Tim blames it on bad habits learned in the hospital.  I don't know what to think.  If he were absolutely inconsolable I'd have to wonder, "Did he break something?" Because, let's face it, that's a very real possibility right now.  But he has brief periods of calm so I resign myself to the reality of a colicky baby.  

As a side note, we changed Jack's formula the other day, which has reduced his gassiness substantially, but he still has bouts which make me wonder if he just might be possessed.  Poor kid.  Poor me.

Anna was colicky and she was exclusively breastfed so I can't chalk it all up to his diet.  Plus, he's in a freaking cast, remember?  I can't even imagine what that would be like as a newborn.  And he can't even tell me what he needs.  So he cries and cries.  And cries.  While we comfort and love and ultimately wait it out.

I'm incredibly grateful that I am a mother of five and have witnessed colic so that I don't second guess myself about whether or not Jack has fractured something again.  I'm also grateful for access to the ultimate source of truth, our Father in Heaven, who provides answers when we need them, if we but ask.  

It's so easy to scour the Internet for advice on this or that in the hopes of finding a solution to life's every dilemma.  Don't get me wrong, Google is my friend, too. However, I hold to the wisdom found in James 1:5 that if anyone lacks wisdom, he should ask of God, who will give to us liberally.  He will help us sift through the wealth of information to find what is right and true and relevant to us personally.  

I trust Him as the source of all light and truth to help me through this uncharted territory and care for my son in the best way possible.  

The day that changed everything.

Less than a week ago I was gearing up for a return to "normal".  Less than a week ago the biggest challenge in my life was the grief I was suffering from not being able to breastfeed.  Now that seems like chump change.  I don't mean to minimize breastfeeding struggles, they send me plummeting into the depths of postpartum depression - read more here about how I feel when breastfeeding doesn't work out.  Still, breastfeeding issues seem trivial in comparison to the happenings of recent days in our family..

This past Sunday I returned to church for the first time since Jack entered the world.  He was exactly a month old, I had missed attending with my family, I was geared up to teach a lesson in Young Women.  It started out great - Rachel proudly held him for the first part of sacrament meeting, he slept in my arms for the rest,  I got to show his sweet face off to everyone who asked.  In a timely manner(no sarcasm here), he got hungry during the second hour of church, so I retired to the mother's room to feed him without distraction and change the inevitable BM that would result from his satisfying meal.  All was going according to plan.  I began to put Jack in his sling so that I would be hands-free for my third hour lesson.  As I began to place the sling between Jack's legs for support, I heard a pop.  Jack instantly began screaming.  It was frantic.  Inconsolable.  Like nothing I'd ever experienced in a newborn.  I took off his pants to examine his legs.  His left leg was dangling.  Between that, the inconsolable crying, and the pop I'd heard, I was confident I had broken(or dislocated) his leg.

I gathered Jack and my things, raced to find Tim and told him we had to go to the ER.  I kept my composure as Jack screamed mercilessly while I traversed the hallways of the church.  But on our way out I began to lose it.  I had broken my newborn son's leg.  I became inconsolable.  On our way to the ER, I held Jack in my arms, trying to support his injured leg while texting a friend whom I was confident would make the appropriate arrangements for my kids and my responsibilities in the Young Women organization, sobbing through every "I'm sorry" and "It's gonna be okay" I could utter in a weak attempt to console my poor traumatized child.  I raced into the emergency room, visibly unglued; they admitted us and I mistakenly hoped they could take away my son's pain quickly.  Only after a weight check, rectal temperature, heart rate monitor, insertion of an IV and administration of morphine did my sweet baby get any relief.  And only a bit, at that.  They took xrays of both legs and I was able to cradle him in my arms and finally, FINALLY he stopped wailing...intermittently, at least.  Still we sat a couple more hours, enduring Jack's agonizing outbursts before receiving any news, which was that Jack had, in fact, broken his upper femur and was being admitted to the OR to be fixed and cast.  We'd be staying the night in the hospital.

Long story short, our little man was put in a spica cast and given full skeletal x-rays to check for abnormalities in his bones before he was able to return to the pediatrics unit of St. Luke's where Tim and the girls were waiting to see their baby brother.  The following day, we received news that Jack's xrays revealed two more fractures - one in his upper arm and another in the back of his skull, both of which had healed enough to indicate that they had probably happened during delivery.

As you might expect, multiple fractures on a one-month old aren't typical of one who has been handled as gently as Jack.  We conjectured there was more to it after viewing his leg xrays in the ER showing a clean break.  There was NO WAY I exerted enough force to cause something like that, even on a newborn, especially on a newborn, whose bones are supposed to be pliable.   As it turns out, after multiple exams by a host of doctors, the most plausible explanation for Jack's condition is a disease called osteogenesis imperfecta, otherwise known as brittle bone disease.  Though we don't have a formal diagnosis yet, because it would be medically irresponsible to completely rule out other possibilities, all indicators point to that.  Despite having any idea which type he has, or how severe it is, we were discharged from the hospital Tuesday night with strict instructions to handle him extremely carefully.  Duh.  ;)

So now we're home.  It's far better than the hospital, as I can actually hold, feed and console my baby without being tangled up in wires and IVs.  The cast is understandably cumbersome, and it's difficult to tell if Jack's cries are the result of pain in his leg, or any of the typical reasons a gassy newborn might fuss.  We're figuring it out.  My mom is here and we have received(and continue to receive) countless acts of service from friends and neighbors in the way of meals, cleaning, words of comfort, driving the kids to and from school and activities...the list goes on.  I am humbled by the kindness of others and their willingness to lighten our load.

Before I sign off, I feel I should express my gratitude to a loving Heavenly Father, in whose plan I trust.  I have seen His hand in our journey thus far and know that the many prayers that have been offered by so many are heard and answered.  Here are a just a few ways in which I have felt His love and influence in recent days (and weeks).

First, I count it a blessing that I was at church and in a quiet place when Jack's leg broke, and that it was me that broke it.  If I hadn't heard a pop, I fear that my(and Tim's) hesitancy at unnecessary medical intervention may have delayed Jack's treatment.  I also am thankful that, because we were at church, our kids were taken care of and I had only to notify one person of where we were headed and bam!  My class was covered, my kids were given rides home, taken care of, and fed dinner by the angels with whom we associate in our ward.

Second, Jack's suffering was reduced because we traveled straight to the emergency room at St. Luke's, a decision that was influenced by a. the fact that it was Sunday and there was pretty much no other place to go and b. the fact that when Micron's health insurance changed and we were given a choice between St. Luke's and St. Al's during open enrollment, we chose the St. Luke's health care plan.  As it turns out, St. Luke's is the only location in the area that was able to treat Jack under the circumstances.  One-stop shopping.

Third, we have friends who work at St. Luke's, one of whom was able to assist Tim in performing a priesthood blessing on Jack's behalf, a tender experience which strengthened my faith in the blessing that challenges in life can be, if we let them.

Fourth, as I mentioned before, Jack and I couldn't work out the breastfeeding thing in his early weeks. It was very emotional for me, so I held onto the possibility of pumping so he could at least get the benefits of breastmilk for as long as possible.  Over Christmas break, the countless plugged ducts I endured and the time I spent away from my family while tethered to a breast pump convinced me to quit.  And quickly.  The week before Jack's injury I had spent in sometimes unbearable pain, going from 7 pumpings to zero.  It was not without purpose, however, because pumping around the clock on top of the responsibilities I now face as the caregiver of a fragile newborn in a cast would be almost too much to bear.

Add to that an angel mother who dropped everything to come help out, angel friends who sacrificed their morning to clean my house before I came home from the hospital, and many other tender mercies too numerous to mention. I am humbled by the influence of the Lord in this experience.  He is mindful of us and I have faith that this experience will be nothing shy of a blessing in our lives.  It's tough stuff, no mistake about it.  But I have faith in the Lord's plan and know that trials are simply an opportunity to grow and learn and become better than we were before.  I will not shirk from that opportunity, difficult as it may be.

Here's our sweet baby in between wails in the emergency room:

And here he is in his hospital bed, post op:

And finally at home with his crazy cast:

Postpartum.

My woes didn't end with a failed epidural.  Jack didn't nurse much and certainly not effectively for the 24 hours we were in the hospital, an experience I expected but had hoped would not materialize. We also noticed that his lower legs had a significant amount of bowing, that his left arm was not responsive, and that the back of his head was softer than normal(at least for my other kids, though this was not worrisome to the doctors and nurses).  Between those concerns and the consultations with doctors regarding them, a circumcision (ouch!), the typical tests and procedures performed while in the hospital, my excited kids itching to see their baby brother and have him and mom home, and the hormones and sleep deprivation, I was struggling to hang on to my sanity.
I met with a lactation consultant soon before the weekend, who informed me that Jack had only taken in .1 ounce during a 45 minute nursing session.  Another bombshell.  She recommend I start pumping and feed him via a tube and syringe to keep him alive while he got strong enough to access my milk on his own.  The following Tuesday I met with another lactation consultant, who acknowledged his weak suck and let me know that Jack had eaten 1.3 ounces in 45 minutes, an improvement that I clung to but was likely induced by the fact that I was engorged and was expressing milk directly into his mouth while he sucked lazily.  All that and it was still not near enough for him to thrive.  I still had to pump and syringe feed for a time, though I was slightly optimistic it was getting better.

The next day was as depressing as all get out. Jack got extremely frustrated at the breast and would fuss and fret and then just give up entirely.  Not wanting to starve my baby, I'd give him my milk through a syringe and then pump for the next feeding.  It was like rejection over and over and over.
I hung on for another week, met with yet another lactation consultant, who taught me SNS (Supplemental Nursing System) where I would latch Jack on, slide the tube in his mouth, use the syringe to get milk into his mouth when he sucked and use breast compressions so that he could get milk directly from the breast.  A process that required at least ten hands and resulted in very little actual milk transfer so I'd have to go pump again for the next feeding.

This was 2 weeks into Jack's life.  I decided that for my sanity and so that I could be a mother to all five of my children, I had to risk not being able to nurse Jack and give him a bottle.  I knew it was the beginning of the end, but I could not go on like this forever.  I still pumped around the clock and watched as my baby satisfied his little tummy through a bottle.  Still sad about not nursing, I resolved that exclusively pumping was something I could stomach for a while so he could at least get my breastmilk.

That was not to be as well.  I spent my kids' entire Christmas break in agony from plugged ducts, which I had always resolved by nursing my babies but since this baby couldn't nurse(!) I was stuck.  After getting plugged ducts every other day for a week and a half, I resolved that exclusively pumping was not the route to go either.  Formula would have to do.  Eve had thrived on it, so I knew it wasn't poison, but it was still a switch I would have to grieve all over again.  I started out slowly weaning from the pump but had the distinct impression that I should just go cold turkey (well, almost).  I reduced my pumping from seven pumpings a day to 1 a day in a week.  It was sheer hell.  Pain does not end with delivery, that is for sure.

Fortunately, this abrupt weaning turned out to be providential, as Jack broke his leg the day I reduced to one pumping.