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!