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!