Mildly Complex

This past week has been full.  Yes, busy full.  But more full in the "I can't process all of these emotions without exploding or completely shutting down" kind of full.  However, that isn't an option when you have so many little people depending on you, so by God's grace, we keep going.

To rewind a little, at 9 months, Pip's physical therapist was concerned that his soft spots were closing too soon.  However, his pediatrician wasn't concerned, and after doing some asking around, his therapist felt better, too, so the subject was dropped.  I never thought about it again.  Then, all of a sudden, not quite two weeks ago, it seems that everyone became concerned about his head shape all at the same time.

Pip may, in addition to FPIES, have a condition called craniosynostosis, in which the plates that make the skull fuse prematurely.  This causes abnormal head shape, and can also cause intracranial pressure, which could explain the vomiting and retching we can't get under control as well as his gross motor delays.  The fix for craniosynostosis is major craniofacial surgery.  We're talking 8 hour, ear to ear scar, kind of head surgery.  It makes my mommy heart panic to think about it.  I swing back and forth between convincing myself that it's so rare that surely he doesn't have it, and nearly panicking because he must surely have it.

That "bubble" at his forhead is called frontal bossing, and can be a sign of craniosynostosis.

Ridging at what might possibly be fused sutures at the back of his head.

Pip's GI wants us to change pediatrician's to an office that used to dealing with more kids with complex needs.  And yet, in the realm of complex kids, he's mild.  Which leaves me feeling really conflicted.  I have typical children, so I can tell you that he's a lot more physical work and emotionally exhausting that most children, but I also know that there are parents who deal with much, much more on a daily basis.  So I feel by turns overwhelmed and inadequate and then guilty about it.

We're waiting to further address Pip's continued retching and vomiting until cranial/neurological problems have been ruled out as the cause.  So for now, we're waiting on those results.

Pip did have a great weekend before the vomiting and retching started back up again on Sunday night, and we enjoyed that so, so much.  Then, last night he was up almost every hour.  Sleep is scarce here these days.

In the meantime, our Mercy girl began having some odd eye behavior that continued to worsen.  I meant to contact her teacher to ask her to keep an eye open for it, but her teacher beat me to it by contacting me to let me know she was concerned.  I was able to film Mercy's eyes as they repeatedly rolled up and back into her head and show it to the doctor.  The hope is that it's a tick that will go away in a few weeks.  However, it may be seizures, so she has an EEG scheduled on Friday.  We have to keep her up two hours past her bedtime and wake her up two hours early before the morning of the test.  She's going to be one tired girl.  The following Friday she has an appointment with the neurologist.

The physical exhaustion is a lot to deal with, but the emotional exhaustion is much, much worse.  Not knowing is hard.  I want to talk about it, and I don't want to talk about.  Pip might have craniosynostosis.  He might need major craniofacial surgery.  He might need to move to a GJ tube.  Mercy might be having seizures.  Epilepsy is a scary word.  We don't know yet.  Waiting, and resting in the Lord is hard.

If you ask us what we need, expect us to say "I don't know."  Because I don't know.  I can't really think beyond the next thing. The next appointment, school pick ups, the next meal.  You might catch us in a smooth day, and wonder what the deal is.  I think about that a lot, too.  

If nothing else, please remember to pray for us.  People say they don't know how we do it, and I believe the prayers of God's people are big part of what keeps us going.

Drowning

There have been so many things I've wanted to write about, but I literally haven't had the time.  Now I've hit a point at which it almost feels like there's no point in trying, I'm so far behind.

As Christians, we know that we're blessed.  That God has bestowed so much grace upon us.  However, at least I have always felt pressure to not allow myself to express myself as anything other than thankful.  Anything less is lack of spirituality.  I am thankful for all of the help and kindness that have been bestowed upon us.  So thankful.  But then there's this:

I'm still drowning.

We can't get Pip's retching and vomiting under control.  Then, on Christmas, the kids came down with a terrible respiratory bug.  Mercy's turned into pneumonia, Abel's into double ear infections, and Pip's into croup so nasty that he required two rounds of steroids and epinephrine.  We made two trips to the emergency room, two to the pediatrician, and still have 13 appointments on the calendar for the remainder of the month--and that's just for maintaining Pip.

And maintaining him is a lot of time and energy.  He looks great, but it takes a lot to keep him that way.  Last week I came home with the kids from yet another doctor's appointment and it was naptime.  Pip had fallen asleep in the car, so I put him straight to bed.  But it was also time for his feeding.  After getting the others down I sneaked into his room to administer meds and hook him up for a slow feeding while he slept.  It was a moment that struck me hard.  This isn't normal.

With the kids all having been so sick, and Pip fighting croup and his usual battles, we've been getting about 4 hours of sleep a night.  It's almost like living in a dream.

My house has never been so consistently messy, our meals have never been so haphazard.  I have moments in which I feel like I'm going to burst with panicky feelings, and I can't really even identify them.  There's the physical work and exhaustion, but there's also the weariness that comes from feeling so utterly helpless.  Having a child who is uncomfortable or in pain, and being unable to help him.  Dreading feeding him, because he inevitably gets nauseated and at least retches, if not vomits.  And despite doing my best, everything I can, he's still miserable.  

He cries "mama" between retches, and all I can do is hold him.  And then, a couple of hours later, we repeat the process.  It hurts.  And yes, it brings on feelings of hopelessness and despair.

We're also about to have to start discussing changes in formula and food trials, which strikes fear into my heart.  If he's this sick exclusively on elemental formula, do we dare risk making it worse?

Living in the Northwest is hard when you have a child with FPIES.  Nearly all of the specialists are on the east coast.  We're hours from the nearest one.  I don't know how we would manage a trip to see one of them, but I'm seriously starting to toy with the idea.  Our doctors are great, but everyone seems to be running out of ideas.

Please pray for health for Pip.  For sleep for all of us.  And for hope.  When he was diagnosed with FPIES we knew it wouldn't be easy, but we had no way of knowing how incredibly hard this road would be.

Our four amazing children at Christmas.  Pip's older siblings love him dearly, and are learning so much empathy and compassion.

Failing to Thrive

It's hard to believe it's been a month since Pip had his G tube placed.  I wish I could say all's been smooth sailing since then.  Pip had a harder time recovering than most, which kept in the hospital an extra day while we got a handle on his pain and nausea.

Once home, we were supposed to be able to give him gravity feeds, in which you put the formula into a 60mL syringe and let it flow into him with the help of gravity, which occurs relatively quickly.  As has been the case, we always offer the bottle first.  He was doing quite a bit of vomiting on the NG tube, but the hope was that that was simply because the NG tube holds the "flaps" that normally close to prevent that sort of thing open.  However, even in the hospital, Pip wasn't handling feeds any faster than 2oz. over 30 minutes via pump delivery system, so we were sent home on 2oz. over 30 minutes every 2 hours.  We were gradually able to increase that to about 3oz. at a rate of 20 minutes.  He still didn't handle a gravity feed.

Pip "eating" his dinner with the family.

However, the vomiting still hasn't stopped.  In fact, last week was really terrible in that department.  We were at the GI again yesterday, where we learned that, once again, he isn't growing.  He's now officially "failure to thrive." We've made some changes to the caloric density of his formula and the delivery rate of his feeds. If we can't get him growing and thriving in the next two weeks, we're looking at a hospital admission.

Getting all cleaned up after vomiting makes everyone feel better.

I realize in this picture he looks fine.  He's a bit thinner than this now, and because he hasn't gained in a long time, his body got smart and stopped gaining length, too, so he still looks pretty good.

If you know me, you know that I struggle with borrowing trouble, and right now I'm having a hard time with that.  If we can't get weight on him, he'll be in the hospital.  I knew something needed to change, but I didn't realize we were to that point.  I'm working so hard, praying so hard, doing everything I can do, and yet we're here.  I have to leave it at the feet of God.  He knows.  He sees. He loves Pip and the rest of us.

The kids have seen me cry a lot.  And pray a lot.  And I'm seeing the fruit of that.  Now, if they see me melting down because the pump is having a problem, or Pip is having a problem, or I'm just utterly exhausted, I often get a hand on the arm from Mercy or Gilead and hear "Mommy, we should pray about that."  From the mouths of babes...

And Pip isn't failing to thrive in every way.  He is making gains in his gross motor skills.  A month ago, this would have been impossible for him.

He's still a long way from "typical" 10.5 month skills like scooting, crawling, or cruising, but for him this is huge, and cause for rejoicing.

So, FPIES continues to be hard.  Really hard.  But God continues to be good.

Be the Voice: Global FPIES Day and No Clear Words.

This month the International FPIES Association and The FPIES Foundation have been counting down to today, October 14th, the first Global FPIES Awareness Day.  Those of us who live with FPIES have been encouraged to "be the voice" of FPIES.

The problem is, I don't feel like I can talk about it coherently enough to be a voice for anything.  I'm tired.  So tired.  When Pip was diagnosed with FPIES at the end of July, I remember thinking "okay, it isn't good, but we'll find an elemental formula that works for him, and we'll be alright."  After all, FPIES is a rare condition as it is, and those who end up needing feeding tubes or other more serious medical intervention are even rarer.

We're there.  On Thursday morning we'll wake up early, check into the hospital, and Pip will have surgery to have a G tube placed.  At this point, we have to walk by faith.  The doctors and other feeding tube parents assure us that once we're past the recovery and the learning curve, the G tube will be much easier than the NG tube has been.  But it's so hard to get past the fact that there will be a hole in my baby's tummy.  He's having surgery.  Not to fix something, but because what he has can't be fixed, and this will allow him to get the nutrition he needs to grow until he can nourish himself.  Until he has safe foods.  Until his feeding aversions have died down enough that he'll allow himself to try foods once it's okay to do so.

I'm worn.  I heard "Worn" by Tenth Avenue North for the first time a couple of months ago.  I heard it again last week and I cried.

Pip smiles a lot.  He charms everyone he comes into contact with.  

But he's also frequently in pain.  He cries.  He doesn't nap.  I don't know what to do to help him.  I've encountered an attitude of "it's just food allergies" from a couple of people at this point.  Pip's "just food allergies" have necessitated surgery and a feeding tube.  He doesn't just have a few food allergies, he has no safe foods.  He's allergic to food.  Food can send him into shock, it causes him to bleed intestinally.  When you have a child with special medical needs, you rapidly gain a new vocabulary.  One of our first new terms was "vomit to shock."  I pray none of you have to experience that with your children.  

We're asked what we need.  How people can help.  The truth is, we feel like we're wading through a fog.  One foot in front of the other.  Walking by faith, not by sight.  We don't have the energy to think about what to say we need.  We need help, and support.  But we don't know how to respond.  Just show up.  Really.  I might cry at you.  Because I'm not brave enough or strong enough for this.  I know that we're still standing and experiencing joy because of Christ and his body.

We've also been asked how to pray.  That's something I've been thinking about.  We've prayed a lot of prayers that are more groanings and mutterings than anything lately.  However, when I think about it, I have come up with a few specific ways you could pray:

Please pray for wisdom for Pip's doctors and medical team.  FPIES is still relatively uncharted territory medically, and there's no standard of care as of yet.  Pray that God would direct them in their care for Pip.

Pray for peace for Ryan and I.  We're having to walk in faith, and I don't know that there's a harder place to do that than with your child.

Pray that we'll be able to invest in Mercy, Gilead and Abel.  This is stressful for all of us, and they're feeling it.  They need us, too, and I find myself feeling like I don't have the capacity to be there for all of them.  I know that I don't.  It's only by God's grace that I can care for them all.

It is also our prayer that others would see Christ in us throughout this process.  Even though we're exhausted and feel at the end of ourselves.  I pray that it is at that end of ourselves that others will see that it is Christ who is sustaining us.

Walking with God

"This is a season. This is a season. This is a season." 

It keeps running through my head like a mantra.  We are walking with God through a difficult season, knowing that He is always faithful.

Last week Pip was placed with a nasogastric (NG) feeding tube.  We watched his formula intake drop from 26-28 ounces a day, to 18-20 ounces a day, and finally to 10-15 ounces a day--and only that much because we were forcing it down him with a syringe.  And he was getting good at blocking that syringe with his tongue.

It was a feeding tube or a hospital admission.  What kind of a choice is that?  Of course I want him home.  

God knows I tried.  I tried to nourish my child.  I watched him go from being a healthy, happy baby, to being on a feeding tube in less than three months.  This thing, this "weally, weally bad FPIES," as his brother would say, hit us hard and fast. 

The hope has been that with stronger reflux meds he'll resume eating enough on his own soon and we can get rid of the tube.  The GI specialist hoped it would only take a week.  Tomorrow is a week, and he has a recheck then.  His oral intake has decreased.  The opposite of improvement. 

I don't know why.  I'm doing everything I can.  I've learned there's a camp that believes that feeding tubes are a lazy parent's way out.  I cried when I read that. So much sweat and so many tears went into to trying to get Pip to take in enough to stay hydrated, let alone grow and thrive. 

I'm overwhelmed and discouraged.  But I'm not angry, and I'm thankful that that emotion hasn't cropped up.  I wonder why all of this is happening, but not in a "why has God done this to us and him?" sort of way.  I wonder what the bigger picture is.  How God will use this.  Because I know that he will.  

I also read a post recently by a Christian counselor claiming that there are some things, like life trauma, and the depression it can lead to "lower a person's tolerance for walking with God."  I believe the opposite to be true.  We might not be the bubbliest people you've ever met at the moment, but it is in these times that God draws us in the closest.  It might not look that way to the world, but Scripture affirms it's truth.  Jesus sought out the hurting, and there is tremendous comfort in that.

So in this season we are drawn close to Him.  In the midst of the lost sleep, the worry, the heartache, the tears, and the unknown, He is drawing us.  In all of it, we are pursuing and walking with God, just as He is with us.

There is Grace for This

My children are in school.  Drop them off with hug and a kiss and a lunch box kind of school.  I never thought I'd be here.  I was raised in a culture that said homeschooling was the only legitimate option for Christians.  Later, Christian classical school became an acceptable, if not preferable, option.  But not public.  Never, ever public.

But my daughter, my sweet, six year old daughter, is at a public charter school.  This has advantages over the traditional public school both academically and culturally, but it is a tuition free public school nonetheless.  Many would say I am abdicating my God given responsibility to raise, nurture, and educate her in the way she should go.

And Gilead.  Gilead is starting preschool today at the local Lutheran church.  Preschool.  The rhetoric in my head whispers that that is never, ever necessary. That he's my responsibility, and I'm failing him somehow.

I'll have Abel and Pip all day, just like it's been since I became a mother six years ago.  Abel, with his boundless energy, and Pip with his sweet smiles and ability to be a joy-filled baby despite being in pain much of the time.  This way I can care for them, really care for them, without turning on the television because I just need to finish school with Mercy, and the baby will wake up any time.  Or worry about the fact that school isn't getting done when Pip has medical appointments three days a week.

I have a tape running in my head that keeps looping over, and over, and over again.  "There is grace, there is grace, there is grace for this."  Grace when Mercy loves school and I'm afraid she won't want to come home when I'm able to add that back to my plate, and grace when she dissolves into tears in my arms at the end of the day.

God is bigger than means of education, and more merciful than I was ever taught to believe.  I cannot, do not believe that God is so rigid in his expectations of us as to keep from extending even more love to those who are in hard and unexpected circumstances, and must abandon their plans for the future.  Plans that were good.  That were meant to please Him.

I'm having to surrender control of my life, my children's lives, in ways that I never have before, and trust God to hold them close.  After all, they're really His, and I want them to be.  We'll continue to fill them with gospel truths and pour all the love that we have into them when they're home.  And every morning I'll drop them off, tell them that I love them, and know that their Jesus is there with them. Yes, there is grace for this.

Big Decisions and Other News

We continue in living in a state of overwhelm.  Most importantly, we've been blown away by the generosity of others--both in the giving of time, energy, and physical resources in the aftermath of the accident and Pip's diagnosis.  People are giving to us in generous, voluntary ways that we know are requiring sacrifice on their parts.  God is moving through his church on our behalf.

There are still big things happening.  Pip spent two weeks on Elecare, his second elemental formula.  However, we were still having days in which he screamed more often than not, and he seemed to be vomiting on occasion for no good reason.  On the screaming days his eczema also flares terribly.  I waited it out awhile, but finally called his specialist yesterday to ask about it.  He is now on yet another elemental formula called Neocate, and we're praying that he'll be "all the way better" on it.  Apparently some FPIES babies really only handle the Neocate, even though all three formulas he's tried are hypoallergenic.  This morning, upon changing his diaper, there were flecks of what I'm afraid might be blood.  I have another call in to the doctor.  I feel like a first time mom again--so unsure and insecure about so many things.

Pip taking a bottle.

Pip on a day he felt decent at the park.  He doesn't look like a baby who's costing $1,000 a month in medical...

We continue to work through the mire of the insurance claims for the accident as well.  I have another doctor's appointment on Tuesday since my back is still quite sore.  The car was, unsurprisingly, a total loss.  However, it had been totaled once before when a tree fell on it (mechanically it was fine), which means it wasn't worth much anymore.  What we'll get in the settlement is less than half of what we'll need to buy something comparable (another used Ford Focus).  In the meantime, a family from church has offered to let us borrow a car.  We've only been at this church a couple of months, and we've never felt so loved by a church body.  I don't think we've scraped our jaws off of the floor yet.

There are also some other big decisions to make within the week.  Decisions that are big, difficult, and emotionally complex for me.  Decisions regarding school for our children this year. I've always planned on homeschooling.  Initially, coming from the background we did, I believed it to be the only Christian option for educating our children.  I'm so far from that place now.  However, it is still something that I love and am passionate about.

I love these guys, and the flexibility homeschooling provides to do things like spending the morning painting in the driveway.

Last year, when Ryan worked 70 hours a week for months after Pip was born, I hit my limit.  Really hit it. Postpartum depression, plus four young kids, and never seeing my husband took their toll.  So, I entered Mercy into the lottery for a local charter school that has a wonderful reputation.  She was drawn for enrollment.  I also enrolled Gilead in the local Lutheran Preschool.  That was the plan. We'd prayed about it and were at peace.  Then, I couldn't stop thinking about how many hours a day Mercy would be gone.  It just felt like by the time we practiced violin and did homework she wouldn't have any time to play with her brothers and just be home. 

So, we really worked our budget and thought we could hire a "mother's helper" to help me out.  That way I could continue to homeschool, but the entire burden of school and maintaining the home wouldn't be all on me.  As it turns out, my mother's helper may not be available after this October, and Pip is requiring more time than I'd planned on.  I started to consider the school option again, but was heartbroken about it.

Then, I remembered a local homeschool co-op that meets for two full days a week.  The other three days you complete the work at home.  I got all excited, and inquired.  Both the 1st grade and Pre-K were full.  So, tearfully, I decided that school would be our best option after all.  Right now I feel like I can't give all of my children everything they need.  I know plenty of homeschoolers don't think taking the year mostly off would be a big deal.  It's only 1st grade.  However, both my personality and educational philosophy rebel against that, and I'm not at peace with just letting her education go for the year.  I've prayed about it and prayed about it, and I'm still not.

This morning, I sat down at the computer to send some necessary emails to solidify the "sending them to school" plan.  There, in my inbox, was an email from the co-op.  Since yesterday they have an opening in the first grade.

School at the charter school starts next Wednesday.  Decisions need to be made quickly.  I love the idea of the co-op.  We need prayer in determining if, under the circumstances, it will still place too much of a burden on me at home.  We also need to decide if it's financially possible between tuition and gasoline costs.  My heart hurts.  If we need to take a break from homeschooling it feels like an admission of failure, even though I know it's so far from that. There's no sin in sending them to school.  It's also the giving up of something I love.  However, I don't love feeling as though I'm short changing my children because I'm pulled in so many different directions.

Whatever we decide, they now have backpacks that they're incredibly excited about...

I know that, whatever we end up needing to do, God will give us the grace for it.  If we place Mercy in the charter, He can bless that, and we can all thrive.  He can also provide the means for the co-op.  But we still have to make a decision, and right now, that's the hard part.