Sunday, October 31, 2010


Sophia had a nice quiet night of sleep - her first all week.  She is able to go longer between pain med doses and is just enjoying spending time with her sisters. 

She did get sick this morning once, after a dose of oxycodone.  But if she takes it again, she will be eating something with it, now that we know for sure it upsets her stomach. She took a little nap afterwards.

After lunch, we all watched Chitty Chitty Bang Bang. Sophia and I had started the movie at the hospital on Saturday morning before she was discharged.

In fact, we were watching it when the hospital pediatrician came by to see her.  His name?    

Dr. Chitty.

I’m not kidding.  Smile 

Doesn’t God have a great sense of humor?

Saturday, October 30, 2010

Home again, home again, jiggity jig..


Sophia was released this morning.  She already looks better.  She is moving around more easily and ate a nice lunch.

Her pediatrician stopped by the hospital this morning to see her.  He’s probably the only the doctor in the past week that has caused her to genuinely smile.  He’s super.  We talked about his recent conversations with Dr. Manning and how dramatically different her post-op x-rays look.  They are the only x-rays she’s had which show part of her heart on the left side of her chest.  They are very hopeful that she is going to see a big difference in her ability to breathe. 

The pediatrician told me he was very proud of Sophia – of how brave and strong she has been.  He said he’ll never forget when he first met her and heard her history – that from a medical standpoint she is unique and fascinating.  But he was also amazed at her tenacity and strength.  He said he thinks of her as his “little engine that could”.  When he left, he said, “God is taking care of our Sophie.”

He certainly is!


!2010-10-25 15.31.04

Friday, October 29, 2010

A bump

We left Cincy last evening with Sophia, hoping that even though she hadn't drank much throughout the day, she would do better at home. But I just couldn't get her to drink hardly anything. She began to show some signs of dehydration in the later evening. So after talking with her pediatrician over the phone at 3:30 am for quite a while, we made the difficult decision to bring her for an evaluation.

She is on IV fluids and is beginning to improve. A visit from a few of her little cousins was excellent medicine. And of course she was happy to see Grandma and Grandpa, who came as soon as I called to tell them where we were.

Aunt Colleen is here with the new baby on the post-partum unit across the hall. She let Grandpa babysit him so she could come show Sophia a few pictures of him on her camera. Sophia was very happy about that.

An x-ray was ordered this morning due to some problems with her oxygen levels, but they came back clear, and the problems were resolved after she got up. Apparently her sleeping position was the culprit. Her neck was bent too far down.

She should be released in the morning, as long as she continues to drink and eat. She's already doing better about trying. A nap and some fluids have been very helpful.

We're waiting for her oatmeal to come - and here it is!

Thank you for praying. We are so thankful for it ! As Glenn said, God has heard them.
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And back again...

After bringing Sophia home last evening, Sophia would still not drink or eat.  Kelly called our pediatrician around 3:30 AM voicing her concerns about dehydration.  With his advise she took Sophia to Clarian North about 30 minutes away.  They put an IV in to hydrate her and administer meds.  Sophia has had a little Sprite and some dry cereal.  We need her to eat and drink and then she would be able to come home.

Please continue to pray for her healing and full recovery.

Thank you again for the prays you have already offered and have been answered gloriously!


Thursday, October 28, 2010

Sophia and Isabella

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While you're praying

Please remember to pray for our other kids at home. A couple of them are really missing me and Sophia. If only I could be in two places at once!

Also, pray that our loving friends who have been helping with things there, will be helped in their endeavors by sweet, obedient children. :)

We're very thankful for their willingness to be such help to our family.

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Sophia is finally seeming to turn a corner. Such a relief.

She really wasn't ready to go Wednesday. But last night she was moved to a step down unit, looking pretty forlorn, and she's been steadily improving since.

She had a better night- was able to get up twice to go potty, and got a little more rest. It took quite a bit of coaxing to get her up, but she was very brave. They have told us that the goal today is to get her up a few times and eating and drinking. Also, to try to decrease the oxycodone to Ibuprofin. Then she should be able to go home tomorrow.

She was pretty uncomfortable this morning with pain, but she was able to sit in a chair next to her bed, (with some persuasive encouragement) perched unhappily on it's edge for the first 10 minutes or so. Her nurse Emily gave her a dose of oxycodone, and she slowly relaxed as she sat there for about half an hour. I was able to distract her with the happy news of Aunt Colleen's new baby boy, born last night. We spent several minutes trying to think of boy's names with an "R" in them. George, Charles, Gordon...

Afterwards, she got back in bed and ate a few bites of chocolate pudding. Her first food since Sunday. Yay!

Now Glenn has arrived with her twin, Isabella. Sophia is telling her all about things here, and Isabella is soaking everything up with a sweet smile, interspersed with sympathetic murmurings. They are sitting side by side in the hospital bed, watching Milo and Otis.

Thank you for continuing to pray for her, it is a great encouragement to all of us. My first thought after the surgery Tuesday, when Dr. Manning said how well it went was, "That's because of all the people who are praying for her!".

Thanks be to God!

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Wednesday, October 27, 2010

Not quite ready

Sophia has had a rough day. The epidural site was pretty uncomfortable, until it was finally removed at 3:00. Her pain has increased under her arm where the incision is. Although they did remove all but one IV line, she is still not eating anything and has drank very little, about 3-4oz. Of liquid. She is on morphine and oxycodon. Her relief seems short-lived.

The doctors decided to keep her another night on the regular unit.
We agree she doesn't appear ready to go home.

Please pray that her pain would decrease and that she will eat and drink. She definitely wants to go home.

Thank you all!

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Sophia had a somewhat restful night, despite itching from the meds. She isn't happy about being here, but amazingly, I think they are going to dicharge her from the CICU today!

She needs to have her epidural removed, and her IV's taken out. She also has a Foley catheter to remove. So although there is much to do yet today, we are rejoicing.

She is beginning to complain more of pain in her side at the incision site. But they are giving her strong pain meds. She is having numbness in her right hand and her right eye is droopy, but the pain doctors feel this is due to the epidural and will resolve after it wears off.

I opened some sweet letters from loving friends and cousins today and showed them to her. She was so happy. She loved the drawings and bright flowers, the pretty swirly letters that spelled her name, and the sweet treats and encouraging words.

We are so very thankful to all of you who have been faithfully lifting her in prayer these past months. Thankful beyond words for our loving Father's kind care and protection of our little girl.

Please pray for her, a speedy and boring recovery. We will update again soon.

Much love to all of you!

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Tuesday, October 26, 2010

Praising God from whom all blessings flow..

I'm sitting here on a padded hospital chair, watching Sophia quietly sleep. God gave us many glorious blessings today.

The staff have been so kind. Just after Sophia was given a sedative to decrease her separation anxiety prior to surgery, the hospital had to call a hold on all surgeries due to tornado concerns. An hour later, the they were able to continue, but the sedative had to be readministered. But it was effective, and although Sophia clung somewhat to my hand, she let go quietly as they took her into the OR.

Dr. Manning told us afterwards that everything he did went better than he expected. He first looked into her
airway and could see the bend in it, where he could tell that it was being squashed. Next he began to enter her ribcage through one of her old incision sites, but the bones were fused together. So he went up one space higher and came in just above her implant. He saw that there was more space around it then had appeared on th CT scan image. So he replaced it with the larger implant. He had had concerns that the old one might be difficult to remove due to scar tissue, but he was pleased when it came easily out.

He then separated the thymus from her lung which created a window down to her heart. He pulled on the pericardium surrounding the aorta and was surprised to find it more stretchy than he thought. He was able to pull it all the way to the sternum. He also found that her lung tissue which had herniated over into the right side was firmly stuck together and moved smoothly in a mass back to the left side. He moved it out of the way, to the left, and stitched the pericardium to the sternum very tightly with three stitches. He told us that bone is sometimes very tough to get through, but he was to find he could get the needle through it easily. He got three "good bites" and was finished.

Sophia is in the CICU for the night and then will move to a normal room.

Thank you for your prayers! God heard them for we know that it was He who has worked all these things for Sophia's good. To Him be the glory!  We will update again tomorrow.
Sophia was taken to the OR at 1:30. We received a call that the doctor began at about 2:30. She was doing well right before, despite a delay due to severe weather.

Thank you for praying!

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Monday, October 25, 2010


We’re leaving for Cincinnati in just a few hours. 

Sophia is a little doubtful about going.  After they were tucked in bed last night, she asked me, “What are they going to do to me at the doctor’s office?”

I talked with her for a minute, and she seemed somewhat satisfied.  She did come downstairs a short while later and told Glenn she didn’t want to go.  But he was able to reassure her and she went to sleep quietly not long afterwards.

We’re very grateful for our dear friends who are helping the kids here at home this week – and so thankful for those we know are lifting Sophia up to the throne of grace. 

I have a few letters from sweet friends, and two little furry stuffed companions to surprise her with after the surgery, when she is feeling up to it.  Alix made a pretty little flannel blanket for Sophia to snuggle with at the hospital.  She wrapped it up and hid it in the suitcase.

I was reading the Psalms at bedtime.  The Bible is comforting, always encouraging, and I was struck with how appropriate Psalm 100 is at all times, including now.

1Make a joyful noise unto the LORD, all ye lands.
2Serve the LORD with gladness: come before His presence with singing.
3Know ye that the LORD He is God: it is He that hath made us, and not we ourselves; we are His people, and the sheep of His pasture.
4Enter into His gates with thanksgiving, and into His courts with praise: be thankful unto Him, and bless His name.
5For the LORD is good; His mercy is everlasting; and His truth endureth to all generations.

Dear Father,
We are so thankful for your gift of Sophia to us!  We love her – and we know You love her even more.  We know You have made her body in this special way, and You have given Your wisdom to men who can take care of her.  She is your people, and the sheep of your pasture.  We are thankful unto You and bless Your Name. You are good.  Your mercy is everlasting.  You have been so merciful to Sophia!  Your truth endures – and we believe it.     Amen.

Sunday, October 24, 2010

Scottish Ball

Friday night we had a wonderful time at the Scottish Ball!  We danced and laughed and danced some more!

It was the 3rd annual dance for our church.  Everyone looked fabulous.  Boys and men in ties and nice pants, girls and ladies in... well... it ran the gamut from sparkling sequined tops and skirts, to period dresses from the 18th and 19th centuries.  Many of the ladies and girls have become practical, so ballet shoes, (and I also noticed a pair of elegant black slippers), were more common this year.  The church has hired the same caller and her violinist and guitarist each time.  They are now familiar faces.  They are so talented!  I wish I could remember the names of some of the tunes - many which have girls' names, like Peggy or Sue, in the title.  I think one of them was called the Irish Washerwoman.  The caller, Mac, gave easy, simple instructions for the dancers, and everyone - including 3 or 4 year olds - was able figure them out pretty quickly, or at least be prodded along in the right direction.  We had a 20 minute break halfway through the ball.  We sipped apple cider dipped from pretty glass punch bowls, and there were two tables filled with delicious finger foods.
Sophia partnered with cousin Brooke for essentially the entire evening.  She and some of the other girls wore their white elbow length gloves, which turned out to be quite an effective germ protector.  Elegant, full coverage for the hands.

We were very glad we waited for the surgery so that she could go.  She was so happy.  Luke took over 800 pictures (he's a little reticent about the dancing part just yet), so we have plenty to choose from to remember the night for years to come.

IMG_0254  IMG_0372

Thursday, October 14, 2010

God's grace

This is from a recent C.H. Spurgeon devotion I read to the kids a few weeks ago.

 It seems good to me to put it here now as I contemplate Sophia's surgery, and as I pray also for dear friends amidst their trials.

"My grace is sufficient for you. "  2 Corinthians 12:9

If none of God's saints were poor and tried, we should not know half so well the consolations of divine grace.  When we find the wanderer who has nowhere to lay his head who still can say, "I will trust in the Lord,"  or when we see the bereaved widow overwhelmed in affliction and yet having faith in Christ - oh, what honor it reflects on the Gospel.

 God's grace is illustrated and magnified in the poverty and trials of believers.

 Saints bear up under every discouragement, believing that all things work together for their good, and that out of apparent evils a real blessing shall ultimately spring - that their God will either work a deliverance for them speedily or most assuredly support them in the trouble, as long as He is pleased to keep them in it.  This patience of the saints proves the power of divine grace.  There is a lighthouse out at sea:  It is a calm night - I cannot tell whether the edifice is firm.  The tempest must rage about it, and then I shall know whether it will stand.  So with the Spirit's work:  If it were not on many occasions surrounded with tempestuous waters, we would not know that it was true and strong; if the winds did not blow upon it, we would not know how firm and secure it was.  The masterworks of God are those men who stand in the midst of difficulties steadfast, unmovable -

      calm mid the bewildering cry,
          confident of victory.

The one who would glorify his God must be prepared to meet with many trials.  No one can be illustrious before the Lord unless his conflicts are many.  If, then, yours is a much-tried path, rejoice in it, because you will be better able to display the all-sufficient grace of God.

As for His failing you, never dream of it- hate the thought.

The God who has been sufficient until now should be trusted to the end.

Wednesday, October 13, 2010

more coughing

Sophia was up a couple of times during the night last night - coughing.  I heard her on the monitor around 1:00 am and went up to give her a treatment and do some pitty-pats on her back and chest to help loosen the junk inside.  She slept for a few hours, then was up again with more coughing.  So we did more pitty-pats and another treatment.  She's been a trooper today, but obviously she's pretty tuckered out.

Please pray for her that she her symptoms would resolve soon.

Also- we received confirmation from the insurance company today regarding precertification for her surgery.  It stated:

date of service - 10-26-10
description of procedure  - aortic suspension
length of stay - 4 days
level of care - acute.

We're very thankful that we know with certainty that the Great Physician is keeping her safe even now - and has everything already covered regarding the surgery and her recovery.

Tuesday, October 12, 2010

hooray for antibiotics

I took Sophia to our pediatrician yesterday.  A terrific doctor - we've seen alot of him the last few years.  :)

He prescribed a z-pack - zithromycin.  So it's on for 5 days, off a couple, then on 5 more.  Should take us right up to before the surgery, but he said that is ok.  He told me to help her lay low for a few weeks - but that he thought she should go ahead and do ballet because it will help keep her muscles stretched and strong.

Sophia was coughing frequently for a spell during the middle of the night, but she was able to get rested and slept in a little this morning. Other than that and some sporadic coughing, plus the expected increased shortness of breath, she is good.

Thank you for praying!

Sunday, October 10, 2010

it is something...

Sophia woke up this morning with some pretty tight, stiff wheezing and coughing.  Her nose is starting to run clear liquid.  She's still eating, although not up to her usual snuff, but says she isn't very hungry.

We'll start her treatments every 4 hours - always the first step for her.  My knowledgeable friends recommended vitamins C and D-3 - so we'll see if that can help ward it off.

Thank goodness for the oximeter our friend gave us a few years ago.  It shows her oxygen saturation is slightly decreased for her, but still in normal range.  I didn't expect it to be greatly different at this point, but it helps to have as much info as possible about how she's coping internally.  Sometimes it's pretty hard to tell just by looking at her and listening to her.

Please pray for her, that God would protect her from a serious infection right now - that she wouldn't be compromised greatly by this, and that she will receive quick healing!

Thank you!

Saturday, October 9, 2010


We spent the day at Mom and Dad's today.  The second Saturday of each month, we all gather there for that month's birthday celebrations.  This month we had 2 - Isaac (9) and Jordan (6).   I think the kids probably all feel that Grandma and Grandpa's house is the next best thing to Heaven.  There is plenty of good food, always cake and ice cream, of course, and lots and lots of playing together.  Coming from a big family (1 boy and 5 girls) and then all of us having kids, some of us having LOTS of kids, is such a blessing.  We love to be with each other - spend our day at Mom and Dad's laughing, talking and eating.  What could be better?

 I got to hold Jennifer's littlest, Alissa (10 weeks) for a while - and it was even fun to change her diaper.  We all caravan-ed over to see Heather and Ron's progress on their new house.  We took turns pushing little swingers, watching the girls play dress up with Mom's ample dress up bin supply, the boys playing with swords, a majority of the big kids playing "capture the flag", built elaborate train tracks, talked about important things, read stories, told stories, and then the piece de resistance was watching Glenn and Mick and Dad take out a toilet and try to put a new one in.

 The kids were in the basement under the bathroom area.  They gathered several blue plastic chairs, and carefully placed them in an arch around the area where all the "excitement" was happening.  They had a front row seat to the whole (or the hole) show.  Glenn, Mick, and Dad took turns going to and from the basement to the bathroom where the exchange was happening.   I went down once to change a load of laundry and found about 6 or 7  kids sitting literally on the edge of their seats gazing fixedly up at the ceiling, where several large square sections of ceiling panels had been removed to provide easy access and visibility for the "plumbers".  There was alot of sawing, drilling, and general tearing away of pretty disgusting and malodorous parts.  It was great fun for all of us when Glenn lugged the old toilet out to the backyard and set it down in the grass.  Talk about convenience!

Since the back part of the new toilet was cracked, Dad and Mick and Glenn took off for a second trip to Lowe's.  Colleen and I decided to bring the littlest ones home at that point.  (it was 10:00 pm).  So she and I piled the youngest 7 into her van and she drove me and mine here.  We had such a wonderful time chatting on the way home.  I love my sisters .... and my brother!

Sophia has been doing pretty well.  She's been more wheezy-sounding lately - I'm not sure why.  I don't know if it's just more symptoms of the ongoing changes inside surrounding her breathing, or if she's coming down with something.  She complained of a sore throat last night, but it was better today.  She looks so pale to me.  But she continues to want to play and behave pretty much as she always has.  I just try to keep her from participating in any play that involves running.  She doesn't seem to mind.

She's supposed to have a sleep study on November 1, here in Indianapolis, but I think we're going to need to change the date.  We will talk to her pulmonologist to see what she thinks.  It will be so close to the surgery that I don't think we're going to have optimal conditions for studying her breathing patterns during sleep.

Speaking of sleep..... :)

Thank you for praying for Sophia.