Monday, December 22, 2014

Immanuel, God With Us - Jude's Surgery details

Many of you know that our little man, Jude Immanuel, is going in tomorrow (Tuesday) morning for surgery at Seattle Children's Hospital.  I know many of you have asked for details and for updates so I'm going to spell it all out but if you don't want to read it all, take away the following:  It is a miracle we found this condition with his kidneys, it is a miracle we live so close to one of the best children's hospitals in the world, we are grateful for your prayers and encouragement and most of all we want you to pray for all the families at SCH over this Christmas season.



The technical name for his surgery is "cystoscopy with transurethral puncture of ureterocele."  You can Google it, I choose not to.  Essentially Jude has a cyst-like blockage on his bladder where his left uterer tube connects from his left kidney to his bladder.  Our doctor, who is really awesome, will go in through a catheter with a tiny camera and a little laser and basically "pop" the cyst and cauterize the area.  That's how I understand it,  still can't get over that they can do this surgery with no incisions, amazing.

So how did they find this cyst?  That's where God's timing gets downright dreamlike.

When I was pregnant with Jude, at our 20 week appointment we went in for a routine ultrasound.  What we, and the ultrasound tech, saw was a healthy baby boy who was growing well and everything looked perfect.  They did notice, however, that my placenta was previa, meaning it was lying too low for me to deliver normally.  My midwife said I would have to go back in to have another ultrasound in 8 weeks and then 6 weeks after that to make sure it had moved enough.    At 28 weeks Jude still looked great but my placenta was still low.  At 34 I went in and my placenta had moved but the tech found something disconcerting with his kidneys. 

She noticed that there was fluid surrounding his left kidney.  When my midwife saw the results and consulted with another doctor they both concluded we needed a more in-depth ultrasound.  In that scan we saw a smiling little boy and definitely a lot of fluid on his left kidney. 



The doctor was very reassuring and told us we would need to have an ultrasound after he was born.   So a few weeks after our beautiful boy was born we headed into the Bellevue Clinic of SCH and had an ultrasound done, which showed the fluid was still there and now there was some swelling on his right.  More doctor calls later (by the way, we have remarkable doctors who really care, our pediatrician called us at 7:30 that night just to let us know what was going on) we had to have a more extensive test done to see if the urine in his bladder was refluxing up into his kidney.  Praise God it was not.

So we met with the pediatric urologist a few weeks later and he told us that surgery was the best option.  He explained that Jude would need to go under general anesthesia and stay overnight so they could monitor his breathing but that the surgery would be quick and rarely ever causes any complications. 

We scheduled the surgery for his first available appointment, December 23rd.  For some people it sounded like a bummer but Noah and I couldn't be more grateful that this surgery will be billed to our insurance in the same year as he was born so our deductibles and such have already been paid.  This is another great big blessing.  So tomorrow morning we head in at 6:45 for his 8 am surgery and will pray for an hour solid that God watches over our little boy, just as He has been since before Jude took his very first breath.  We would love for you to join us in that prayer.




But there is something so much more going on that we would also ask you to pray for.

There are way too many families, for whom spending Christmas at Seattle Children's is just a part of the routine.  There will be families who will be spending their very last Christmas with their beloved child in that hospital.  There will be mothers of brand new babies clinging to life and there will be fathers who pace powerlessly outside emergency surgical rooms.  There will be brothers and sisters who don't know life outside the necessity of hand sanitizer and hospital masks.  There are families who will be saying goodbye for the last time at the moment our son wakes out of his anesthetic fog only to cry in my arms and be comforted by our voices.

So please, pray for our little boy, but more over pray for those families.  Pray for hope, pray for one more day, pray for the release of pain and the miraculous healing of tiny bodies. 

As we waiting in faithful expectation for the light of the world to come crashing into our existence, pray for His light to shine in the midst of  some unimaginable darkness.  Pray that God would open opportunities for us to pray with others whose children won't be able to sit around the Christmas tree with their grandparents like our boys will this Christmas. 

Those children desire your prayers, their parents desire your prayers even if they would never say it.
Jude's middle name is Immanuel - God with us.   This time of year that name comes with a heavenly announcement.  Glad tidings of great joy and the declaration we need not be afraid.  However St. Jude is the patron saint of hospitals and desperate situations.  So we ask that in your faithfulness and glad tidings, you send prayers of light and hope to those in situations much more desperate than ours.

Merry Christmas

Ali, Noah, Soren and Jude


Wednesday, December 3, 2014

P-E-R-S-P-E-C-T-I-V-E spells Relief

Hey moms, dads, singles, couples, those separating and those desperately trying to piece back together, parents, kid-free, kid-hopeful and kid-trying so hard you're becoming despondent; I'm not going to make you read to the end to get the moral of the story, it's this - You're doing fine.

There, that's it.  I have stories about why you're ok and I'm ok and the kids are alright and all those things but truthfully I want you to know you're doing fine.

There are so many people posting articles, much like this one, that are encouraging you to put down your phone and be present, give yourself a minute to pick up your phone and check out, to get the dishes done, to spend a day without doing dishes, to work, to stay home, to let your kids see you fail, to be perfect and in finally doing all those things you'll be doing ok.  But that way of thinking only leads us to believe that failure is our only option because some mom whose house is cleaner, whose bank account is bigger, whose white couch is miraculously stain-free thinks we are failing.  I am not her, you're ok, I'm ok and the fact my son is watching Winnie-the-Pooh ABCs for the 90th time is ok.

In the last week I was hit with some seriously introspection-inducing perspective on a few different occasions and I couldn't help but notice how these themes are resonating in the lives of people around me.  All my stories come from the world-view of being a parent, if this isn't your world view you don't have to read it and still know you're doing fine.



All I Want For Christmas -

As some of you know our son Jude was born with a kidney condition called hydronephrosis for which he needs surgery on December 23rd.  It's a common condition and the miraculous things that have occurred surrounding the condition are beyond amazing and I will tell you more about it later, but initially I was just mad.  I wasn't mad that my tiny baby boy needed surgery I was mad because we'll be in the hospital on Christmas Eve and because Jude can't travel for 4-5 days so we can't go home to Minnesota.  I'm missing meeting my newest nephew, the rest of my family is missing meeting Jude, I'm missing my uncle's wedding, I'm missing this, and that and all the things.

So I prayed, not for a change in perspective but a change in the date of the surgery.  If we could just get in earlier things would be OK.  Then I was struck by what I can only imagine is the Holy Spirit's slapping glove of common sense (it stings a little but it sure snaps you out of a funk).

There will be families in that same hospital, maybe even the next room, who will be spending their very last Christmas with their children.  Seattle Children's Hospital is one of the most premier children's hospitals in the world and they still can't save everyone.  I will be home in my cozy bed by Christmas surrounded by our loving family and I don't have to live in fear that the next call from the hospital will be the worst news I could imagine.  In fact, for my own sanity I choose not to imagine it.  I will miss having my family meet Jude at 2 months old but they'll meet him at 4 or 5 and the fact is they will meet him and he will love them and we're doing OK.

Daily Bread -

About three weeks ago Jude got a cold.  Baby's with colds are usually super snuggly and really sleepy and in about a week things get better and then they hit a growth spurt and are crazy hungry so I was prepping myself for that reality.  So during the first week the fact that Jude would throw-up nearly everything he ate wasn't surprising, post-nasal drip often does that to a baby.  We made sure he was having enough wet diapers every day to prevent dehydration but I didn't think much of it other than resenting the insane amount of laundry I was doing because everything was covered in puke.

But by days seven and eight and nine things weren't getting better.  So on day 10 of constant spitting up gargantuan amounts every day I took him in.  The medical tech put him on the scale and my heart sank.  My chubby little boy who put on four pounds in his first month had only put on an ounce in the last 20 days.  The doctor explained that he was having a really bad bout of reflux and explained some of the things we needed to do to keep the food down, position changes, sleeping in his carseat, etc.  Then he explained that if Jude didn't put weight on in the next four days at the rate of 3/4oz to 1oz per day that we would have to explore other options.  Those options included introducing solids very early, prescription medicine and perhaps even formula.  All of those things terrified me because they weren't how things "should" be.

That night, holding my husband's hand we prayed for our sweet little boy and something came to me, daily bread.  "Lord give him this day his daily bread."  I realized that if it meant that my son could grow normally and not be faced with nutritional difficulties for the rest of his life I would give him anything I could.  Who cares if I had to use formula or rice cereal or baby Zantac (which is currently saving our sleep-lives and his esophagus)?  If it meant daily bread so my son could grow then bring it on.  And that night as I clung to my crying baby boy who was so hungry because he hadn't eaten well in nearly two weeks I wept for the millions of mothers around our world who are literally begging for daily bread for their children.  Mothers who have had to hold their crying babies night after night because they are so hungry and there is nothing their mother can do about it.  For the pain she feels because she feels like she's failing.

No sane person would hold her poverty as failure in the light of the love she has for her family.  Why do we allow ourselves to judge bottle-feeding moms, prescription-needing moms, fill-in-the-blank moms, trying-hard to have kids moms-at-heart, trying hard to keep their kids moms, etc., as failures because we live in a world with so many options available for success.

Eye Contact for Empathy -

My kids have awesome grandparents.  Like seriously awesome.  I got to spend some time one night talking with my father-in-law, Kevin, about the Juniper Junction Relief Nursery, where he is on the board.  This is a place that helps families that are to high risk for child abuse or neglect by providing a few hours a week that gives the parents a break and lets the kids spend quality time with adults who care about them.  They also provide parenting coaching, home visits, a diaper bank and more.  The work they do has been proven to reduce the risk of child abuse in a home by 93%.  Let that number sink in for a minute.

That means the difference between the neglect or abuse of a child and a healthier environment are things like taking a break, access to food, clothing and diapers and someone who cares enough to make sure that child knows they are loved. These, friends, are simple things.

There is a doctor on the board who has done massive studies on the brain development of children before age three and has discovered that the neural pathways that develop characteristics like empathy are fully present or not present at all by age three.  The key to developing these pathways is parental bonding, things like eye contact, non-threatening touch, laughing and play.  (Sorry to dumb it down, I am no doctor)

As I was listening to Kevin talk about the families he works with and how they are coaching parents I couldn't help but think of how embarrassed I would be if someone was telling me how to play with my baby.  Then came in that slapping glove from the Holy Spirit again.  Why?  Why would my pride keep me from being the best parent I could be?  Also, why on earth would I wish shame or embarrassment on parents who are genuinely trying to end the cycle of abuse that many of them suffered as children?

I told Kevin about how much of a relief that story was for me simply because it offered real perspective.  The world I live in, the stay-at-home mom, middle class, white American, educated world, tells me all the time about how I fail at being a parent because my kids aren't bilingual and my son watches tv and knows how to play puzzles on my Kindle and eats non-organic food and how I am not fully fulfilled by being a mom.  But the truth is, in the grand scheme of things my world is very little and very privileged and unsustainably loud in the desire to be heard above the din as the best voice of all things mom.

This perspective was not a "thank goodness I'm not them" but more of an empathy for the moms who are trying so hard to bring their children up out of darkness into light.  An empathy I am capable of because my mom and dad did just fine, an empathy my sons will be capable of because I'm doing fine, my husband is doing fine.

So find empathy, make eye contact with the parents of the world who are in this with us.  Find grace with those who are eager to tell you how different things will be when they have kids.  Practice patience and self-control when the urge to judge another mom/dad/co-worker/barista/bus-boy/beggar on the basis of comparison arises and grant them the benefit of the doubt.  Because too often we of little faith choose doubt over hope, peace, gentleness and love.

But if we live in the knowledge we are ok, you are ok, I am ok and that things will be ok our perspective widens enough that you won't even be able to see if the dishes are done.

Grace and Peace
Ali