2012

We are sitting in boxes in our apartment tonight, anticipating a move tomorrow!  We will be moving "down the road" to a house that we'll be renting... more space will be a lovely deal, as well as having a place that is more conducive for hosting groups of people.  The last couple weeks have been the general gross-ness involved in packing up all our dear things and figuring out what order to do so, so that I don't go crazy searching for the chocolate, etc.  Ha-ha, as if I would lose track of a handy chocolate stash!

So yes, perhaps not the "best" time to move, but it will be nice once it is all over.  We are rejoicing that Ada has been doing so well these last weeks, eating, gaining weight... we are slowly finding some sanity!  Honestly, we went out last night in honor of New Year's Eve as a family of three- and it went well!  This morning we three went to church together, and it also went well.  Could normalcy be returning?  To think of being a "normal" household is almost too good to be true.

I do plan to write a sweet change of the year blog soon, but for now I don't have enough working brain cells. Perhaps next week?  Oh, and when will we have internet at our place?  Well, we will talk again soon.

Ada heads in to the cardiologist on Wednesday... we hope to hear that she can stop taking a couple of her medications, and that she is cleared of the sternal precautions.  We'll let you know!

The Night Before Christmas, RPE (Revised Pitrone Edition)

'Twas the night before Christmas, and all through my hut
Lie boxes and baskets and remnants of what
Our dear little family has found at our door
These past days of Christmas have not been a bore!

The first day I didn't know what to expect -
A couple fine packages arrived here.  And yet,
We didn't know who would be sending this loot
How caring, how generous - sneaky, to boot!

The next day the ornament said #2
And now we were really wondering who
would pour on our family a bunch of great things
to eat, to snuggle, to wear... We were kings!

At least that is how we began to feel.
We could hardly believe that it was real -
That every day, a gift would arrive
From a friend, though anonymous, from someone alive.

(Hey, once in awhile, the rhyming gets lame.
But I'm just a little bomboozle-dee-damed
And reeling and out of my mind, as you see,
We just can't make sense of this big shopping spree!)

Why would a person, a group, or a school
Think that it would be so great and so cool
To "love on!" a former teacher and fam
And bless the dear socks off a little sweet lamb

Named Ada.  My daughter, she hasn't a clue
The ways that you all have shown love... and it's true!
You've blessed us beyond any words we can say
You truly have made this a great Christmas Day.

So thank you to all of our dear little elves
Who sacrificed much for our last days - the Twelve
The Twelve Days of Christmas Two Thousand Eleven
We consider you all to be blessings from Heaven.



Huge thanks to the families and people involved in the last two weeks of our lives, blessing us with such a great variety of gifts.  We know little, other than that there are some dear people at JES who have huge hearts for our family.  Though we feel undeserving, I must say that it is a beautiful ending to a very tough year.

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God. (2 Corinthians 1:3-4)

Ada's first solid foods!

Ada speaking her mind!

After a very hyper evening, Ada now sleeps.  She has been doing great these last few days with surpassing the amount of milk intake that is her goal each day.  She has healed up quite nicely on the outside, and each day gets a bit more active.  Her latest "milestone" is that she can sit up - ALMOST unassisted!  She looks so proud of herself when she does so, and it is pretty precious.  Still no rolling over, crawling, or jogging, but we figure that she's allowed to have a lot of slack cut in her general direction, due to what she has been through this past month!

Last week at the cardiologist, the echocardiogram showed that her left ventricle, the one that is doing all the pumping, is operating slightly less "effectively" as it had been when we left the hospital.  They measure the heart when it is at it's most expanded point, and compare it to when it is at it's most contracted point, and assign a fraction or percentage... she went from 33% to 22%.  Not sure how concerned to be about it, but the doctor prescribed a new medication for lowering blood pressure, and wants to see us in a week (which means that I head in with Ada tomorrow.)  The medication should help relieve some of the stress or pressure on the heart muscle, allowing it time to heal and recover.  So of course this is a little hiccup, and we are watching Ada carefully.  She really seems to be doing fairly well, and as of right now has not seemed to pick up the slight head cold that I've had the last couple days, which is a huge blessing.  I cannot wait for the day when we don't have to think about her health and heart condition.  But at the same time, I really am grateful that we have access to such tremendous health care, with caring doctors who are good at what they do.

Ada is six months old on Thursday, and it is so crazy to think of all that has happened these last months!  No, the time has not flown by.  It has been a very long and hard season, but our baby girl is getting so big!  She's been gaining weight a bit more rapidly than is her custom (!) and we plan to attempt some solid foods in the next couple of days.  Pictures to come, for sure!

And Christmas also comes - we'll be here in Colorado, as the cardiologist has said that Ada should not travel yet due to the air quality on planes.  So a word to those of you who WILL travel by air this holiday season - Airborne.  Or Vitamin C.  Or Zinc.  Whatever works for you!  And for my friends and family in Minnesota, I miss you bunches and bunches, and mourn another Christmas away from you all.  Just to illustrate the depth of my sorrow, know that a couple evenings ago I even contemplated making a batch of fruit soup!  OH, and don't you worry, lefse is on the list of things to do this week.  So prayers for a long nap from Ada and an ineffective smoke alarm would be appreciated!

I'll update again soon, on tomorrow's visit at the cardiologist, and perhaps also with some photos of the 6 month old delightful girl I spend my days with.

Peace...

Home again

Aaand, we're home!  It has taken a few days to update you all, but have no fear... we've been busy.  Preoccupied with feeding and sleeping and snuggling with our baby girl, and celebrating Thanksgiving together as a family... at home!

We were released from the hospital Monday afternoon, and as you will notice from the above pic, Ada is tube-less!  The feeding tube was removed as she was able to step it up with feeding - yay for Ada! - and during the night on Sunday into Monday morning the nurses began to turn down the oxygen that Ada was receiving, and found that she was maintaining her oxygen sats without it!

The first couple of days home were the most wonderful as we were able to finally rest without interruption.  Since Thursday Ada has been fussy at different times, and it is tough to stay ahead of the game with her pain medications.  We aren't totally sure how she is feeling, as sometime crying is just normal infant behavior, but then at times she cries in a way that we know we'd better get the strong stuff in her.  She is sleeping pretty well, though, aside from a couple nights of a good deal of crying.  And the happy news is that she is eating much better than she has... perhaps ever!  She is daily meeting the goal that the nutritionist has set for her, and so we rejoice in that one.  The better eating is a direct result of the surgery, and we hoped for it... but what a relief and beautiful gift to be experiencing it.  It has been a hard push for five long months, feeding-wise.

As the day has gotten away from me and now it is bedtime, I have much more to say, but fatigue is setting in.  Let's just close it off for tonight by saying that Nick and I were very grateful to be home on Thanksgiving with our little baby this year.  She has grown to be such a precious smiley little doll.  As of a couple days ago she has started to smile much more with her eyes as well, squinting them up a bit as she flashes a big one!  We are blessed.  Good night, friends...

Sunday night

A couple of days have gone by, so time for an update!  Saturday ended up being pretty intense, hence the lack of update!  Life in a hospital is anything but restful, we are finding.  Not only are the nights hard and far too short, the days can be pretty tough as well, juggling meds, checking BP and vital signs, EKGs, echocardiogram, chest xrays, blood draws, visitors, baths, feedings, pumpings, talking with nurses and hospital staff.... and clowns.  Yes, today a clown stopped by to entertain Ada and the other kids on the floor.  Good thing she was napping so that us adults had the undivided attention of the clown.  Much like the evening before and the yellow lab sent in to greet sweet Ada.  And yes, I did make up the breed of the dog, not being much of a fan of the species myself.  Don't worry, I was gracious and gave him a few pats on the head as a reward for taking time out of his busy schedule to visit the patients at Children's.  Okay, I'll stop now before I get myself in too much trouble!  I love too many dog-lovers!
But Ada had a good night last night and today was also a good day.  This morning her NG tube was removed, and she has had a day full of good or great feedings, praise the Lord!  We won't know until tomorrow, but it looks like we may be discharged sometime in the afternoon!  Ada will likely go home with oxygen, as the two times today that they tried to wean her from it were not successful.  But the end of our hospital stay is definitely in sight.  I am so excited to get Ada home to our cozy little apartment with a fireplace, tasty home-cooked meals, and uninterrupted naptimes!
Nick and I would both say that these days have been so surreal, and very much a blur.  I left the hospital for the first time all week last evening for a coffee date with my mom, and it was so strange to go out into a world that keeps moving.  It is ridiculous to think that Thanksgiving is this week, but I am so grateful for so many things.  We'll write again when we are safe and sound at home, perhaps tomorrow!

Friday

Today has been a quieter day, and we have been given goals to reach for Ada to be discharged.  She will need to be weaned off of oxygen, or more likely to a lower level.  She may still need oxygen at home for the next few weeks as her body adjusts.  Secondly: feeding.  She has not been eating much, and the concern of the doctors is not so much that she wouldn't gain weight during this stay, but that she wouldn't be receiving adequate nutrition to heal up her wound quickly.  Today she received a NG tube in her nose that leads to her tummy, so any milk that she doesn't drink in a feeding gets put in her tummy anyways!  I bet that parents of junior high boys would also like to have the use of an NG tube when serving split pea soup or boiled dinner (right, Mom?!)

Well, our little lady is a champ.  Seriously, I am one proud momma.  The first feeding with the tube in, she whipped through the 80 ml of milk, and we had nothing left to push down the tube!  An OT and a speech therapist came to watch Ada drink and give us some suggestions, and they had nothing to say - they called her a poster child!  My baby girl!  The next feeding wasn't quite as good, so we used the tube, and will do so for awhile to just get Ada up to her caloric needs.  Meanwhile the rest of us are having no trouble meeting our daily caloric needs, so that is awesome.  Thanks, French Toast and Grilled Cheese!

Then Ada had her IV pulled out and a shot in both thighs.  All in a day's work.  We're proud of her, thankful for the care here, and in general running on caffeine and your prayers, so keep one of the two coming...
 Love for today!

Day Four? Losing count... :)

Today the milestones at the hospital were that Ada received a little bath - yaay! - and got the bandage on her tummy from the drain tube removed.  Also, two sensors on her forehead and above her kidney were removed, so at this point, she just has one IV line and is receiving oxygen, in addition to the stickers on her chest to measure heart rate, breathing, and her oxygen levels.  She's becoming more and more free!
We've been able to hold her a bit and snuggle, which is of course the very best, though she still is seeming to be experiencing quite a bit of pain and this morning was particularly tough for her.  Please pray for her in the pain and also for eating, as she has not eaten too much in the last couple of days and at some point that may catch up to her.  I can imagine not wanting to eat too much after such a major surgery.
Nick and I continue to be pretty wiped out, since there is so much traffic through the room from hospital staff, day and night.  All necessary, of course, but it makes for an ineffective sleeping environment.  If I played the glad game, I'd just be glad that we both can be here together, helping our baby in these days.
So good night for now, which of course doesn't mean that I'm actually going to bed, but I'm headed over to Ada's to scoop her up and snuggle for awhile.
So grateful for your love, your concern, your prayers!

A couple pics from the hospital.

Two Days Post Op.  Smiles came later!

Well, we're pretty exhausted. As of yesterday afternoon, Ada is in her own room up on the cardiac patient floor, which is obviously a good sign. She has not been eating very much and is crying a lot. At this point it is a challenge to know what she needs more- rest or hydration and calories. But then again, that is pretty typical behavior for Miss Ada. Not a great eater! I had hoped that yesterday's eating meant that the surgery was instantly effective in helping Ada to have energy to eat well.
In any case, we are here and have a quiet room and everyone got a few hours of sleep last night. Ada continues on two or three meds to manage the pain. We even got some SMILES last night, which was a wonderful thing.
This floor has less strict visiting restrictions, so if you are healthy and wanted to drop by we will be here for awhile. Send us a text about timing, as we need to protect her nap time and our's. Theoretically we'll get naps sometime in here...

Day Two

Overnight, Ada started drinking from a bottle again! She has since taken 8 ounces without much problem, though she protests the whole way through- "angry drinking" we call it!
The nurse just took out two of the IV lines, the drain tube, and the catheter, which means that we are a couple steps closer to moving out of ICU! That may even happen later this afternoon, which is simply amazing.
Ada has been eating quite well and appears that maybe the headache and pain have lessened. They've kept her pretty well doped up with the meds so it is hard to tell.
Doctors and nurses continue to tell us how great Ada is doing in her recovery from the Glen procedure. "Better than the textbook", was the comment from our ICU doctor. Thank you, Lord!
More later...

Surgery is Done

It is nearly 9pm and Nick and I are sitting by Ada's bedside in the CICU - cardiac intensive care unit.  What a day.  We got to the hospital a little after 7 this morning and checked in and soon were chatting with Nick's parents and sisters and my parents, our support people for the day.  We brought Ada into the Cardiac Pre-Unit and got her changed into a hospital gown.  We sang a few songs and did a lot of snuggling.  By 9 am the nurse had arrived to take Ada into the operating room.
The surgery itself took less than the expected 4 hours, and it went off without much of a hitch.  Everyone went according to the planned procedure, the Glen procedure as it is called.  The one additional aspect was that Ada's hole between her left and right ventricle was enlarged.  Then, her superior vena cava was attached to her pulmonary artery.  Her time on the heart and lung machine didn't seem to cause much of an issue, and her heart started up just fine on its own once the procedure was complete.
By about 2 in the afternoon Nick and I were allowed into the ICU to see her.  She is still trying to come out of the heavy sedation, and is likely experiencing a pretty massive headache, in addition to pain from the incision and the number of tubes, IVs, and wires all over.  It is pretty sad to hear her quietly cry, though I'm sure we'll hear it much louder and stronger once she really wakes up from all the sedation.
We are so very, very grateful for the successful outcome of the procedure!  We were definitely both "at peace", or as much as could be expected given our situation, while Ada was in the operating room.  In a sense, it is almost more difficult to be here with her and see her in pain, but we know that she is healing.  It is all a process.
We'll post more later, but wanted to at least give a bit of an update.  Thank you so much for all of you prayer warriors out there, remembering us and our dear little one!

It is fall - or fall into winter - I am rediscovering parts of my wardrobe that haven't been touched in months and months.  And I love fall and bundling up and drinking warm spicy drinks and sitting by campfires.  Or this year we have the benefit of living in an apartment with a gas fireplace.  One flick of the switch and I have delicious ambiance.  I love it.  This above photo was taken by Nick's uncle Joe, with 4 month old Ada.  It was a delightfully crisp Saturday morning, and the park was the perfect place to be for a photo shoot.  We know that, because there were a number of other photographers capturing their special treasures on film.

Tomorrow we go in for the pre-op visit at Children's Hospital.  We have already met with the surgeon once, so we will talk instead to another "fellow" at the hospital to ask details about the surgery.  This week we took care of getting Ada's chest x-ray and blood work done, so I think/hope that the visit will be as painless as possible for Ada, and thus for all of us.

I think that I discovered my coping mechanism this morning as I was IRONING A TABLE RUNNER.  Which I never do.  Ironing in general ranks up there with dusting as household chores I opt out of.  No need! But today I have been on a busy, cleaning raid of our apartment, which I suppose is a fairly helpful coping mechanism.  Could be worse.  But we're staying busy, staying occupied.  I have had daily moments of losing it, getting overwhelmed with fear or sadness.  And at the same time, I have had daily reminders of the care the Lord provides for us in the midst of a hard season.  He is caring for us through His people and I am grateful.

A couple specific prayer requests would be for Ada's health in these next few days, as we are attempting to keep her from little germies that would halt or postpone the surgery.  She is fine, doing well, in fact, though she had an elevated white blood cell count (I think), which may have been from fighting off a virus of some sort earlier on.  In any case, please pray.  And stay away from us if you are sick. :)  Also, my parents will be driving out on Sunday and early Monday to be here at the time of the surgery, so please pray for "travelling mercies", as I hear them called.

Here we go, folks.... aaah!  I'll include another picture of our baby girl.

"Children of the heavenly Father, safely in His bosom gather; Nestling bird nor star in heaven Such a refuge e'er was given." -Lina Sandell

Pics from the day

Before...

After...

Heart Cath Today

Sigh - we made it!  We're pretty exhausted after a night with little sleep and a day filled with commotion.  But the news is good.  We are home!  I woke up for the 1 a.m. feeding today to look out onto a winter wonderland.  The snow was coming down so strong that I wondered if it perhaps would be a game changer.  But we braved the snow, cold, and bad road conditions and arrived fashionably late to Children's hospital at 6:30.  After checking in we met with nurses and doctors and Ada had her vitals taken.  All systems were go, so we passed off a crying baby to a nurse - a stranger - and shed a few tears.  That was the toughest part of the day.  But by 11 a.m. we were reunited with a sleeping baby, a wonderful feeling.

The heart cath went very well, we are told, and there were no major surprises in Ada's heart anatomy.  The pressures in her heart also are showing to be a good sign, and the doctor was able to definitively rule out the possibility that her body had produced little "runners" or extra veins that formed to try to make their way to the lungs in order to get oxygenated - those would need to have been closed off prior to the surgery.

After the cath was completed, the doctors did a sedated echocardiogram to again get an accurate picture of the heart and the size of the veins/arteries that they will be dealing with in a couple weeks.  Again, no major upsets there.

Ada has of course been more fussy than normal, but the up-side is that she has been eating like a champ today - already 15 oz. taken today by 5 pm, which is pretty stellar.  We were told to expect that the first 24 hours after coming down from the anesthesia are the hardest and most fussy.  I'd better get some rest before "nighttime" comes, just in case!

Your prayers and support are so appreciated.  So encouraging to know and feel that we are not alone in this. We'll keep you updated!

Upcoming Surgery

A year ago we were finishing up our stay in Guatemala, at the end of "The Grand Adventure" - or so we thought!  In those last weeks we had learned that I was pregnant; and added to the sickness from the food, I was also very weak and struggling with morning sickness.  I was at the point in my pregnancy that I had lost our first baby that spring, and was of course extremely nervous about the baby that I was carrying.  More than anything, I just wanted to be home.  We flew back to Denver on Halloween - I remember that a few of the airlines in the Guatemala City airport had decorated for the occasion!

Well, those of you who are parents or those of you who know someone who is a parent (...?) will attest to the fact that in fact, our adventure was far from over.

Today little Ada is peacefully napping in the next room, giving me a chance to connect with you all this afternoon.  Some people would say that they can't remember what life was like before their kids.  Well, I do. I remember it, and it had its benefits.  But of course I wouldn't want that life back now.  Ada is a little special treasure, and I am not saying that "tongue in cheek".  Her current favorites include: scraping off her socks on the floor or the changing table, looking at her mirror buddy, smiling and high-pitched "talking", and now most recently... staring at the fire in the fireplace.  What a life!  I can't say that I know much of her personality yet, but it is clear that she loves time with mommy and daddy, and that she is a bit more hesitant about hanging out with anyone else yet (pretty sure that is normal!).  Also, she really does seem like a joyful little girl.  If she is well rested and fed, why, she's a charmer!  Super smiley and talkative!  It is so much fun!

Time has flown by since the day we were rushing up University to get to the hospital as I was in labor.  Ada is now 4.5 months old, and that means that it is Time.

(Summoning up courage now...)

Wednesday of this coming week, we head in to Children's Hospital for a heart catheterisation.  It is a one day procedure where Ada will be put under general anesthesia and a cardiologist will go in through an artery in Ada's groin and snake a thin tube up to her heart in order to measure pressures and get accurate pictures of her heart so that there are no surprises for surgery.  A sedated echocardiogram will also happen, as well as a meeting with the surgeon who will be doing the surgery.

Surgery has been set for Monday, November 14th.  We don't know all of the details of the surgery, but wanted to at least let people know the timeline for when it will be occurring.  It will likely be about 4 hours of actual surgery with an hour on either side when we will not have contact with Ada.  We are thankful that we live so close to such a great hospital, and the surgeon who will be performing the operation is one who comes highly recommended from multiple sources.

Nick and I plan to use this blog as the primary way of communicating throughout the process.  If we change our minds, we will post that here, to direct anyone to wherever we might choose to use.  There are a number of you who have asked how you can help us in these days.  It is difficult to know, to be honest.  We've never been through anything similar to this before, thank the Lord.  Encouraging notes, calls, etc. are always appreciated.  Food at the hospital is not a bad idea, as we will be there for likely a week, more or less.  As we become ready for visitors at the hospital, we will post that as well, for those of you in the Denver area.  After the surgery we will likely have more of a clue what will be both possible and helpful for our family.

Nick and I are hanging in there, some moments "on a shoestring".  We try to think of the the things to be thankful for: that this surgery is even possible so that our daughter's life can be saved, that we have health insurance, that Ada has done so well these last months as we have waited so that she is bigger and stronger, etc.  Yet if I could choose to not go through this difficult time in life, I'd jump at the chance.  I know that often times people can look back at the tough times in life and realize that it helped to make them the person they are today... I'm not there right now.  I'd like to opt out of open heart surgery on my daughter, please.  No, I'd like to opt out of the NEED for my daughter to have open heart surgery.  But life is not fair, and none of us will journey through this life without a taste of difficult days.

I am a follower of Jesus Christ, and I trust Him these days.  That is all I have at times, and I know that Nick would say the same.  Jesus conquered death and decay, once and for all.  Below I have posted a video of sweet Ada talking, and then a video of me playing and singing a Sandra McCracken song, Feast or Fallow.  This song has been so special to me for the last year and a half... I know I've mentioned it here before.  The song speaks of the seasons of life... some of them times of feasting, some of them dry and barren, "fallow" seasons.  We'll endure this hardship by clinging to our Rock.  Please think of us and pray for us as we do.

Grateful, love for you all.

Wise words from Ada on her 4 month birthday...

In Feast or Fallow by Sandra McCracken

Ada at 3 months

Resting atop Bjork mountain

Ada's first trip to 7,000 feet elevation; she did great!

Aah! A hand-knit bonnet from mommy - such fun!!

Ten Pound Baby

A great celebration occurred in our household this past week... Ada is now over the 10 pound mark, and we are glad and rejoicing!  A week ago at the pediatrician, she had gained about a half ounce a day, which the pediatrician was happy about... "Keep doing what you're doing!" was her word of encouragement to us as we headed out the door.  Sigh.  Do you know what the means?  That is not encouragement!  One of these days I want to hear the doctor say, "Hey, go ahead and relax, let off a bit!  Take the pressure off!"  But until then, we keep going with the 8 time a day feedings, followed by bottles... followed by pumping, followed by collapsing in a  pile of exhaustion!

But it was GOOD news that she is gaining weight, and continued to do so this past week, at the same pace of a half ounce a day.  We pray that it continues and that she continues to grow big and strong, heart-wise and other-wise.  So we celebrated and I made a Peach Kuchen, recipe to follow.  Feel free to make it in your own home and party with us!  Tasty with the fresh Colorado peaches which are now gloriously in season...

SD Peach Kuchen (from the March/April 2011 edition of MidWest Living)

1.5 cups flour
3/4 cup sugar
1.5 t. baking pwdr.
1/4 t. salt
1/4 t. nutmeg
1/4 c. butter
1 egg
1/2 c. milk
2 cups sliced fresh peaches
1/3 c. brown sugar
1 T. corn syrup
1 T. butter
1 t. lemon juice

Grease and flour 9 by 9 pan.  Mix flour, sugar, baking powder, salt and nutmeg.  Cut in butter to resemble rice grains; make well in center.  In small bowl, mix egg and milk; add to flour mixture.  Stir til moistened (it will be lumpy).
Spread into pan.  Arrange peach slices over batter.  In saucepan, mix brown sugar, corn syrup, 1 T. butter, and lemon juice.  Bring to boiling.  Drizzle over peaches.  Bake in 350 degree oven 40-45 minutes.  Yum.

We are awaiting the arrival of a "holter" (sp?) for Ada to wear.  At the last doctor appointment she had missed or delayed heart beats, which apparently is somewhat common for little ones, but under her circumstances, the cardiologist wants to know how often this is happening in case there is cause for concern.  The holter will register how often it is happening over a period of time... maybe just a couple of days.  So we wait.

Today was good, for the most part, and we are so thankful.  We continue to be grateful for all the prayers and words of support!

Ten Years to the Day.

Today I had a realization.

Ada was born on June 15, 2011.

Where was I ten years prior to her birth?

A 20 year old, riding back to summer camp after a week of staff training on the North Shore of Lake Superior.  In a patch of road construction, the driver lost control of the 15 passenger van in which we were riding and at 65 mph we headed into the ditch, rolling end over end.  Upon arrival at the scene, paramedics presumed that at least half of the passengers would be dead on the scene.  There were seven of us in all.  Seven young, passionate, adventurous camp counselors.  Seven daughters and sons.  Seven souls.  And all seven lived.

The accident on June 15, 2001 was an event that I will never forget - the sights: wriggling out of the window next to me and falling on the ground in what I thought was the wrong direction.  In the crash, I'd squeezed my eyes shut so tight that I lost my contact and was unaware that the van was now upside down on the ground.  The sounds - I'd been wearing headphones, listening to a song, "Can't Live a Day" by Avalon, when the wreck occurred.  I don't remember the sound of the crash itself, but remember the sounds of our director yelling for us to get out of the van.  The smells - gasoline and rubber and damp earth.

This was a moment of my life when I saw it all - though briefly - pass before me, and I thought I was going to die.  In the weeks and months that followed I struggled with many of the other survivors of the accident - my friends - as we dealt with a lot of aftermath of being involved in a traumatic accident.  I asked God why.  Why me?  Why did it have to happen?  Why did I survive?

As I realized today that Ada came into the world exactly ten years after I went through this experience, I was stunned.  And I thank the Lord.  Though I don't know exactly why, yet.

I only know that recently I have been working through a question: How long will I live here?  The question started off even before Ada was born as a particular struggle of mine as I continue to miss my homeland, and never planned to live for so long away from family and friends back in MN.  I knew and know that having a baby with need of consistency in health care and insurance junk would mean that we'd be living longer in this land out west.  And some days that can be so hard, particularly as holidays and birthdays and family events come and go.  And for the Larsons, this has been a year with a lot of transition, which I have watched from a distance.

So I was driving around one afternoon, pondering this question, when I turned it around.  Well, I probably didn't all on my own, since many times I take my time and enjoy living for a bit in my "woe is me" world.  But slowly I began to ask myself, "How long will I live here?"  Wait, that's the same question.  But instead of meaning, "How long will I live in this physical place or with these specific circumstances that I don't like...", it changed to asking, "How long will I live in this place of discontentment?"  How long?

How long...

How long, O Lord?  It seems that in our present situation, every other day is a hard day, a tough day with Ada.  Feedings that do not go well.  Weigh-ins that aren't high enough.  Inconsolable evening crying.  I wish that things were different, and I cry out to God, "Let her eat - MAKE her eat more.  It's not enough!  She's burning through her calories with this crying - make her stop... help me."  I miss out on social events and "mommy groups" and engagements out of our apartment that would only tire Ada and put her in contact with germs.  And although we're managing okay and hanging in there, I get tired and frustrated and worried and wonder how long and for what purpose.

A week ago I read a verse in Psalm 138... "The Lord will fulfill his purpose for me; your love, O Lord, endures forever - do not abandon the works of your hands."  I don't get it right now.  The purpose of these trials, these tough days, that is.

Ten years ago, I didn't get it, either.  What was the purpose of the accident and of my survival?   I wrestled with it for months.  Ultimately at that point, a different verse became life-giving to me:  "However, I consider my life worth nothing to me, if only I may finish the race and complete the task the Lord Jesus has given me - the task of testifying to the gospel of God's grace."  I was confronted with the frailty of life, and the uncertainty of tomorrow, and had to deal with the fact that I was not guaranteed another day, another breath.  But the importance came in living each day with purpose, acknowledging the Lord's grace to me in my life.  And to have been given a gift in a precious baby daughter on the 10th anniversary of the event that called this to my mind... is pretty awesome.


A bit of an update on Ada's situation: slowly, slowly she gains weight, though now we are supplementing more often with breastmilk infused with delectable formula for extra calories.  She continues to be on the diuretic, and a chest x-ray last week and blood work showed that her lungs are not filled with fluid, which is a huge blessing.  Her coloring is good, her breathing seems fine, so really the main issue is her weight gain.  She is cooing like crazy these days, and I'm convinced that she tries to sing with me.  What a doll...

Please continue praying for her heart condition and preparation physically for the surgery this fall, and for Nick and I as we make decisions in feeding, schedules, social engagements, work possibilities, and anything and everything else that all ties in.  Grateful for all of your support and love!

Blessings?

Parenting is not for the faint of heart, apparently.  I've never been much of a night owl... and you know where this is going.  A few nights ago Nick and I took shifts being awake with Ada after she had received her first round of immunizations.  I guess all the all-nighters in college served to prepare me.  Who am I kidding?  I had maybe two or three all-nighters in all four years of college.  I need my sleep.  But not when I have a dear little one who is in pain and needs to be held.

On top of the distress from the shots,  her pediatrician has started her on a diuretic, with the purpose of clearing out her lungs of excess fluid.  I can't completely understand the situation, but in short, Ada's heart makes a choice on where the blood will go- some to the lungs, some to the body.  And the good news is that plenty of blood is getting to the lungs, so her blood oxygen saturation levels are in the high 90s, or very good for a "normal"-hearted person.  But that also means that her lungs are getting "wet" because of the great amount of oxygen, and thus she is tiring easily and feeding has not been going well at all.  We haven't had another baby to compare Ada to, so we really weren't sure of the expectations for how quickly she should be feeding, and how much she should be able to consume in a matter of minutes.

Doctor appointments are stressful to me, because I don't know how freaked out I am supposed to be.  I've been getting direct phone calls from the pediatrician and the cardiologist, which makes me realize that they are indeed staying on top of Ada's situation, which is great... BUT, also that they are expressing concern over her situation.  As I go through my daily routines with her of feeding and naps and anything in between, it is easy to relax a bit and think everything is fine.  Apparently 30-40 minutes to drink 2-3 ounces is not fine.  How un-fine are we talking?  I want her to be fine, I want life to be normal, at LEAST until the surgery time in the fall.  These days with her are enjoyable and sweet and special and at the same time they are so scary and tiring.  We can't do this on our own.

Listening to the radio yesterday I was reminded of a well-known Christian musician whose son has a very similar heart condition to Ada's.  He has a blog and many supporters, and a medium through his music and the airwaves to share about what he has learned through this process.  Well, I have a blog and many friends, and I certainly could write a song or two if I thought that would help me feel better or express my situation.  But as I consider that, I realize that none of the lyrics I would choose would be very radio-friendly.

There are many times in a day when it is hard to remember the simple, yet amazing gift of life itself.  I am privileged to care for a little baby girl and having experienced loss, it is all the more precious to me to have Ada in my arms.  But some days I have words I'd like to share to whomever will hear that do NOT sound too KLOVE friendly.  The first time I heard the song "Blessings" I wanted to change the channel immediately... "What if Your blessings come through raindrops, what if Your healing comes through tears, what if a thousand sleepless nights are what it takes to know You're near..."  Ugh.  Some day I'll probably love the song.  But guaranteed, not in the middle of a sleepless night with a screaming baby and a scary heart condition.

Many have asked how we are doing, and the Minnesotan in me starts with a tentative, "Fine..."

And then I realize that I don't have to be fine right now.  I'm hanging on.  Most days I bobble between feeling somewhat normal and showered and fed and grateful to just plain old surviving.  There are a good many things I'd like to be doing (like actually giving more attention to the plants on my deck so we will gain more than two teeny cherry tomatoes this summer - or making a beautiful mobile for the nursery to stimulate Ada's brain development - or writing thank you's to the many people who have blessed us this past month - or remembering "tummy time" for baby Ada - or vacuuming - or planning ahead for fall music lessons, fast approaching - or ...) and yet in all honesty, my full time job is feeding Ada, and working so very, very hard to get her to gain weight.  And when she won't drink, she won't drink, and I get frustrated and scared and begin to dread the next doctor visit and what the word will be at that point.

Another lesson in life that we are not in control.  And though tonight I cannot sing the Blessings song because I don't WANT that-  I want sanity and comfort and protection and health and heck, a bit of prosperity wouldn't hurt, either- I know that it is true that we are not alone in these days of survival.  This is a season, God only knows how long or how short, that my prayers are those of desperation:
Lord, help.  
 I need sleep.
 Help her to eat.
 Someday I'll trust that God will give me the grace and strength to lengthen out my prayers and my focus and my clarity and perspective on life so that I can write a song like "Blessings" and mean it.

For those who pray,
pray that Ada would eat what she needs to grow as big as she needs to be for the fall surgery;
pray for our doctors to have wisdom in her treatment (and that they'd communicate with us well so we don't needlessly freak out over not understanding what they're saying);
pray for rest for the three of us, and perhaps our neighbors as well?!;
pray for financial provision;
pray for Nick and I to grow together in this time of stress and support one another;
pray for the healing of Ada's heart.

Love to you all, goodnight.

Our dear little lady... I often wonder what she is thinking as she gives us some ridiculously precious facial expressions.  They change so very quickly that we get a little show many times in the day.  It goes from super cute and happy, head thrown back, eyes closed and a precious open-mouthed shriek of joy to pouty-lipped waa-waa-waa's in record time.  She has not learned yet to contain or contrive her emotions, which make it so fun to observe.  Also, it is pretty impossible to please this little girl perfectly.  The slightest jostle while holding her or loud noise will startle her into a fit of sadness as if we'd slapped her right in the face.  Oh my.  But we love it.

We have had some ups and downs in the last week.  Our visit to the cardiologist last week was very encouraging, as the heart defects have remained the same and the holes have not begun to close up, which for now is a good thing.  We will likely not need to go in for another echocardiogram for another month, which means that the doctor is pretty comfortable with her oxygen levels and condition.  We were so thankful to leave a doctor appointment feeling encouraged and filled with hope that Ada is doing well (and thus we somehow take some credit for that, at least internally).

The discouragement is that Ada has not been gaining weight well.  This is something that is a common issue for babies with heart defects, as the body burns more calories than normal to make up for all the hard work the heart has to do.  Last week she didn't gain any weight, so of course I was a basketcase.  We have since met with a lactation consultant and are in contact with the doctors and have a plan that might be working... we'll see.  The next weigh-in will be Monday.  I'd never known that breastfeeding could be such an emotionally taxing activity, on top of the physical demands.  So that would be a pretty basic but important request for prayer.  We need dear Ada to be big and strong as soon as possible, yet I can't force the food down her throat.  Thanks, folks!

We continue to be blessed by packages and meals and encouraging emails and texts and letters... wow.  Thanks, guys.  We know we have so much to be thankful for as I sit in my air conditioned apartment with a full pantry and a little wriggling baby by my side.  She did manage to just roll off the pile-o-blanket next to me and nearly into my lap in the middle of her nap.  Naptime at 10pm, you ask?  Don't.  It's been a rough day, schedule-wise.  Let's just say that the authors of "Babywise" would not approve!  I'm reading the book along with La Leche League's "The Womanly Art of Breastfeeding", and my brain is about to burst as it is being pulled in opposite directions.

So I know that my last post promised that I would post some musings about being a mother sometime soon.  I have journalled approximately 2.5 times in the last five weeks, and I actually think that is pretty good.  So I've not had a lot of time for deep thoughts... I am working on the first or perhaps second tier of Maslow's hierarchy of needs as I provide food and safety for my little one.  I will work up to self-actualization.... someday.  But not tonight.

Goodnight, and we'll chat again sooner or later!

Ada June arrives

So at long last, here is the story...
Have you ever had it said to you that you would "just know" when something new and amazing was happening to you?  For example, how do you know if you should get married?  I remember asking that question when Nick and I were in the dating phase of our relationship, and I remember getting the all-too-common response of "You'll just know!"  Well... maybe... yes... but making a lifelong commitment takes more than a magical feeling, I believe.  I was also told that I would "just Know" when I was in labor.

Incorrect.

A couple weeks ago I started feeling kind of gross and in some pain for a couple of days straight, which was new to me.  I'd had a relatively "easy" pregnancy, and had not felt any of the warning signs that labor was imminent.  After all, what is a contraction?  Who can explain it who has not felt one?  So I continued on with my activities.  On Tuesday the 14th I was supposed to have a pool date with a friend, and called her to cancel.  Instead, she brought over lunch and watched me lay on the couch in my uncomfortable state.  I was pretty bummed that I couldn't rock out my maternity swimsuit once again, and instead was feeling this grossness that confined me to my couch.  By the time she left a couple hours later, my feelings of grossness were getting a bit closer together, and I began to think that perhaps something was happening.  I called Nick from the painting job, and by the time he got home and saw the look on my face, he knew that he'd not be getting a shower, or even a change from his painting gear.

We drove safely yet swiftly to the hospital, and upon arrival, spoke to the nurse on duty to explain that these contractions were now about 2-3 minutes apart and that we were a "high-risk" pregnancy.  "yeah, yeah, we know", she said dismissively, and she continued to check us in and get my info.  My guess is that most of her patients must claim the title of high risk, as she didn't even know my name yet, but something telepathically must have given her that information.

A half hour later, I was in a labor and delivery room.  Turns out that I had been in labor for quite awhile without knowing it, and had advanced enough to the point that we were told that we would be having a baby that night!  This blog is neither the time nor the place to discuss all the lovely details of the birth of our baby (you are welcome!), but in essence we ended up having nearly every intervention that we'd hoped to avoid, ultimately including a C-Section delivery.  However, Nick and I had talked in advance about how we wanted to trust the medical professionals and their advice to us, knowing that they would likely be more apt to be cautious, due to the heart condition of our baby girl.  All in all, we were very impressed with our care at St. Joe's hospital, and had a great experience with all of the doctors, nurses, and interns.  Great people.

So we had arrived at the hospital a little after 5pm, and were gazing at our baby, Ada June Pitrone, at 1:47 am, Wednesday, June 15th.  My mom had been able to hop on a plane and arrived at the hospital a couple hours before Ada was born, which was a huge answer to prayer.  Upon birth, I was able to "hold" her, as is shown in the above photo, for a few minutes before Nick and Ada left to the Neo-Natal Intensive Care Unit down the hall.  My mom was there in scrubs ready to be with me as the doctors finished up their duties and I headed in to recovery next door.  Nick's parents and sister were also able to be at the hospital for 10 hours of waiting until they were able to see Ada at close to 5 am.

As far as her heart condition goes, Ada received an echocardiogram immediately after birth which showed the heart defects that we had been expecting (VSD, transposed great arteries, tricuspid atresia) as well as an ASD (atrial septal defect) and I think an additional valve that was not formed... the name of it escapes me at the moment!  In any case, our daughter has a very special heart... and with that said, she has done remarkably.  Numerous doctors and nurses have raved about how well she has done, and we are so very grateful and consider it to be a huge answer to our many prayers.  We were able to avoid the first of the three surgeries on her heart, that would've happened within the first week of her life.  Instead, Ada was discharged with me less than three days after being born!  Amazing!!

Two weeks later, and Nick and I are home with Ada, beginning a new life as a family.  We've been so grateful for the support of family - my parents were out for a week together, and mom for an additional week, and currently Nick's mom is staying and helping us out - and friends... it has been so fun to introduce our new favorite person to the many loving people in our lives.  Meals have come in to help the new mommy, loving gifts have come for dear little Ada, and countless emails, texts, calls, and cards to remind us that we are part of a large community that will be supporting us through these next days and weeks and months.

Later on we will post more in the way of specific prayer requests that we have now, as well as more pictures (yaaay!).  I also intend to blog about feelings.  I'm a new mom now, after all, and have a lot to debrief.  And I know there are many out there who have been there and we can support one another!

Much love to all of you!

Nick, Anna, and Ada Pitrone

Anna at 37 weeks

A common sight in our house these days!

Nearly complete changing table for little Pitrone by Papa Nicholas

One week away and counting...

And that would be one week from the due date for Baby Pitrone!  Unreal to think about as we approach that day.  Every morning I wake up and think, "this could be the day" - the day when everything in life changes in some way.  A good way, but scary of course.  It is also a reminder that we are not in control of the events to come.  I'd love to be able to prepare and know the how and the when and be ready for the pain and the decisions in labor, but that's not the way it works.  For now, baby seems quite content to stay right where she is.  The lady at the candy store this weekend gave me a sideways look and predicted that I'd deliver on Tuesday... and she's only been wrong four times!!!  Oh, my.  Well, make that five.  And yes, the candy was for the baby, though I chose all my favorites.  It was my 30th birthday, after all... have to live a little. :)

So before I get too tired or wrapped up in some activity of nesting, I thought I'd update you all a bit on what we know now.  At our last meeting with the cardiologist, she was quite encouraging and gave us quite a bit of hope that because of the large size of baby's VSD (the hole in her heart between ventricles), the chances look good that the first surgery at birth may not be necessary.  In essence, one of her three (!) heart defects may actually prevent the need for surgery!  This obviously is what we hope and pray for, though of course we just wait.

Upon birth - and we are assuming that unless there are signs of distress or unless she wants to hang out in there for an extra couple weeks, we will be able to go through with a "regular" delivery - we will have a few moments together and then baby and Nick will go to the neonatal intensive care unit for testing and monitoring and an eventual echocardiogram.  They will be watching her breathing and the levels of oxygen in her blood.  The echocardiogram will be given to help the surgeons decide on if they are comfortable with forgoing the first surgery, and waiting until the 6 month surgery.  There is a chance that after testing and monitoring, baby will be able to return to my room and possibly be discharged at the same time.  That would be absolutely wonderful.

Of course in all of this there is no way to predict, so we just ask for your prayers and support in these days.  We're very excited as we wait for her arrival.  We'll be sure to post an announcement and pics when we're able to, though we're not planning to prioritize blogging and facebook updates in those first pivotal hours and days which will be very precious to us.

Thank you all... with love from the Pitrones!

33 week update on Baby Girl!

Hello bloggy world!
It is a gorgeous day in Denver today.  The whole month of April has been... well, spring-like, unpredictable, and pretty cold.  So it is a beautiful change and makes me want to LIVE outside.  I spent a couple summers working at Trout Lake Camp during college, and one of my favorite aspects was the sheer amount of time spent out in the fresh air.  Love it.  And good weather days like this one don't hurt for my painter husband, who feels like he's been on the same exterior job for the entire month because of the wind, cold, rain, and yes.. snow!  But work is a blessing.

Today marks week 33 for my pregnancy and pictures would show that I am undeniably carrying a little human out front.  And she is ACTIVE -- I even asked my doctor at the last appointment about the amount of movement I've been feeling, and was assured that there is no such thing as too much movement from baby.  I would beg to differ in the middle of the night when baby is having a dance party while I'm trying to catch some zzz's, but it is somewhat reassuring to continue to feel her movements.

A bit of an update on her condition - our last ultrasound a couple/three weeks ago showed that she is in the 75% for size, so we are thankful to see that she's bigger/stronger as we approach June.  A couple weeks ago we also had an echocardiogram, and found that the VSD - the hole between the right and left ventricles - is still wide open.  We're thankful for this, because if it stays open, the chances for the first surgery needing to happen are reduced.  However, the cardiologist expressed concern in the connection of the pulmonary artery to the heart.  There is usually a narrowing that happens, which would encourage the passive blood flow that her heart will be working with for the first 6 months to make a choice between the pulmonary and the aorta.  If it remains wide open, the doctors may decide in the first days/weeks that she'll need to have surgery to essentially band off and narrow the pulmonary.

So... we still don't really know what to expect.  Surgery is planned for 6 months and 3 years, and possibly in the first days or weeks, depending on how she adapts to life outside the womb, and breathing for herself.  We'll have another ultrasound in a week, and another echocardiogram a couple weeks after that, and then it will be really close to go-time.

We're hanging in there.  In one sense, there is nothing we can do but wait and try to get ready and prepare as we would for any birth.  We've already been super blessed with the support of friends and family and a couple of baby showers have started our nursery off to a very cute and girly beginning!  This girl has no idea how loved and anticipated she is already...

On the other hand, this has been very difficult for us.  I get tired of being gracious in response to (well-meaning) people whose flippant assurances of God's faithfulness and nature as The Great Physician leave me feeling empty.  I encourage others to pray for baby's miraculous healing, but find that I can't do it myself.  I don't know that I could handle it if I hoped and planned on God healing her, and then He didn't.  It is easier for me today to just go through the motions and prepare for what seems to be on the horizon for our new little family, rather than to depend on the supernatural.  And even admitting that is very difficult for me as I realize it may not sound like I've got it together spiritually.  Well, I don't, and find myself turned off to the "positive and encouraging" faith walk-ers that do not seem to have a dose of walking through the valley of the shadow.

That all being said, we do have hope.  We continue to be thankful for the quality doctors we've come in contact with, and are grateful to live close to all the appointments this spring.  Our families have been there for us, loving us and praying for us.  We know that we are blessed more than we deserve to have an embarrassing number of quality friends and support people in our lives who check in on us.  Nick and I are so thankful to have one another, and though this has been a tough year, we have only been brought closer together as a couple.  And little baby girl is growing and will be with us soon and we are so excited to meet her.

Pictures to be posted soon...

We're ba-ack!

And now to the two people who perhaps still check in from time to time, SURPRISE!  Greetings from the Pitrones!  We have much to update...

We arrived home to Denver the beginning of November, sick as dogs.  After blood work and stool samples and a whole lot of laying around and re-hydrating, we were on the road to recovery.  Thankfully neither of us had a parasite, though we still don't know what plagued our system for those weeks.

The piece of the puzzle that we weren't sharing was that while in Guatemala we discovered that Anna was pregnant - an awesome blessing, but it also freaked us out quite a bit.  We'd had a miscarriage early in the summer and were pretty jumpy the second time around, particularly because I was not able to handle the smell of much of anything, and there was very little I was able to feel comfortable eating.  That was the main reason for our early return to the States, as we didn't want to do anything to jeopardize the life of the little one.

We lived with Nick's parents for the first two months after returning, and generally had the goal of getting healthy again and getting baby checked up.  Beginning of January we moved into a new apartment, and I began substitute teaching and teaching private voice and piano lessons, while Nick began bids and gearing up for another season of painting.

At the end of January we had an ultrasound to let us know that we are having a little baby girl!  Very exciting for both of us!  Yet at the same time we learned that Baby Girl Pitrone has some major heart defects that will need to be addressed immediately upon birth.  For those of you aware of the anatomy of the heart, I'll explain that on our baby, the tricuspid valve didn't form, so there is just a wall in its place.  Blood is able to access the right side of the heart due to another defect, the presence of a VSD or ventricular septal defect.  And finally, the two main arteries out of her heart are switched around, "transposition of the great arteries".  Three surgeries are required to fix the problem; one at birth, one at six months of age, and one at age three.

This has obviously been a very difficult month for Nick and I as we think of and prepare for what is to come for our baby.  We've been encouraged by contact with others who have been in similar situations to us, and have experienced "success" for their children.  Ultimately we realize that there is nothing we can do... and in realizing our powerlessness to protect our baby girl, we can do nothing but attempt to rely on the Lord for strength.  Some days this is easier said than done, though I understand that for those who today have children, it continues to be a struggle throughout their lives.

Today I am fine.  Yesterday I was not.  The day before I was fine.  There are moments when the weight of decision-making is heavy upon me.  There are times when I'm sick of how unfair life can be.  Other times I am able to think more logically and acknowledge that for every statistic, SOMEONE has to be the 1 out of 16,000.

We'll do our best to keep folks updated on what we learn as we get closer to the due date, in the middle of June.  From what we understand now, I'll be able to have a regular delivery whenever it begins, and then baby will be taken down the hall to the NICU to be observed for a few days.  After I am discharged from the hospital, they will transport Baby Pitrone to Children's Hospital for the first surgery, if it is necessary.  There is a chance that she will do okay without it, which would obviously be a huge prayer request from our perspective.

Even though we're back in the states and not too far away from many of you, we would love to make you feel close and keep you an important part of our life.  We need you.
Love from Nick, Anna, and Baby