Isabelle's Out of Surgery

Thanks for the prayers!!  We just met with Dr. Bradley.  Surgery took 7 hours due to excessive scar tissue, but other than that all went smoothly. 

This is a photo of Isabelle on her pre-op day.  Child Life gave her the supplies to make a princess tiara!

Four Hours Into Open-Heart Surgery

At 11:00 a.m. we received an update on Isabelle.  She is on the heart/lung bypass  machine, they are through all the scar tissue, and they are working on her actual Fontan.  Please continue to pray that she will remain stable through the procedure, pray for skill for Dr. Bradley and for the anesthesiology team and also pray for the entire OR team as they continue to care for Izzy.

This photo was taken of Isabelle as she awaited surgery this morning.  We got up at 4:30 a.m. and had to be at the hospital at 5:30 a.m..  This was actually taken after they gave her a dose of Versed so she was quite loopy. 

The  nurse that took Isabelle to the OR, this morning, was Rita. In God's providence she is a believer, a mother of 3 sons (1 adopted domestically) and has her paperwork in process in China to adopt. Needless to say it was wonderful to hand-off my sleeping Isabelle into her loving hands. God is SO good to take care of even those little details!!

Isabelle's In Surgery

They took Isabelle back for her Fontan open-heart surgery at 6:30 a.m.  They were hoping to begin at 7:30 a.m. and expect it to be a 6 hour surgery.  Please pray for the Lord to guide Dr. Bradley's hands as he performs the surgery on Isabelle's heart and pray for the entire OR staff.

Lily's Back in The Hospital

The hospital staff at MUSC gave Lily surgical caps, gloves, and a "surgical doll" to help her understand the procedures that were going to take place before her open-heart surgery.  She didn't play with them while in the hospital, but the weekend she came home, she and Isabelle enjoyed performing "surgery" on the baby.

Little did we know that just a week and a half later, Lily would be back in MUSC...

After going home on Friday from open-heart surgery (see my previous post), we had a quiet weekend.  On Monday morning around 5:30 a.m. Lily Rose began running a 101.5 temperature.  We visited our pediatric cardiologist office where he performed an echo to rule out out PPS (fluid build up around the heart), and he also drew blood cultures and bloodwork to rule out general infections or blood infections.  After they came back normal, we chalked up the fever to a general virus since Sarah Mei was just recovering from a 48 virus.

After 5 more days of fever, we returned to the cardiologist office on Friday for another echo, chest x-rays, a throat swab  (to rule out strep), more blood work and blood cultures.  Still nothing conclusive.  On Saturday and Sunday Lily Rose's fever climbed to 103 and 104, and on Sunday we noticed a few little bumps on her face and arms.  We knew something was brewing.  By Monday, when we arrived at the pediatrician's office  Lily's rash had spread considerably and her fever was continuing to hover around 103 and 104 even alternating between Tylenol and Advil.  Dr. Flannery, our pediatrician, tested her for  flu, RSV, strep, drew more blood cultures, and blood work and decided to send her to a highly specialized pediatric dermatologist in our area to determine the nature of her rash.

On Tuesday, we visited the pediatric dermatologist who immediately identified the rash as Erythema Multiforme and wanted Lily Rose admitted to a hospital with a Pediatric Dermatologist specialist.  Unfortunately we don't have one in Charlotte who sees patients in the hospital.  Strange??  Our best option....travel back to MUSC where our cardiology team and a dermatological team could coordinate Lily Rose's care.

At first it wasn't clear whether Mytoplasm (an infection in the lungs) or an allergic reaction to her Lasix (a drug commonly taken after heart surgery) was the culprit for the alergic reaction; however, after a clear chest x-ray, and a consult with infection disease, the prevailing thought is that Lily Rose had a VERY unusual allergic reaction to Lasix.  Right now she is on an antibiotic, as a "just in case" for  Mytoplasm while we wait to get titers back to confirm or deny whether she in fact has it.  She is on a new dieurectic.  They have stopped her aspirin (also part of every post-Fontan surgical regime), and we wait and see if the rash dissipates or continues evolving.

Thankfully she had no fever for the last 24 hours...the first 24 hour, fever-free period, in 11 days!  She is itching and the rash, as it develops, turns into patches which resemble almost burn-like areas.  Unfortunately she is limited to Tylenol and Benadryl, since introducing new meds is not a good idea when trying to pinpoint a trigger for Erythema Multiforme.  Consequently, part of the time she is quite uncomfortable.

However, she had a few hours earlier today when she felt pretty good.  Torie and Isabelle made the trip to Charleston with us.  I had to laugh when Isabelle and Lily's toy of choice was a blood pressure cuff, and they both knew what to do with it.  You know your children have spent too many hours in a hospital when they have baby dolls and play dishes and they chose a blood pressure cuff to play with instead:)

Isabelle's pre-op is on Friday and surgery is on Monday...it looks like the 2 girls may be sharing a hospital room afterall.  Pray for us and that we will bring glory to God in all of this!

Going Home

The Dr.'s made their rounds yesterday and were happy with the amount of food Lily Rose ate. They decided no NG was needed, they removed her chest tubes, did an echo, and took a chest x-ray.   After just an 11 day stay, a relatively short hospital stay for a Fontan procedure, we will be checking out of the hospital today.  We are thrilled!

Yesterday was a relaxed day at the hospital.  Without all the extra tubes and with Sarah Mei and Isabelle to join in the fun, Lily Rose made trips to the Atrium to play and enjoyed photo ops with some friends.

One of the photo opportunities was with Joy, a PCICU nurse, who has taken taken care of all 3 girls on their day of surgery.  This 1st photo is in PCICU on Day 2 after Lily's surgery....

This is a photo of Joy with all three girls. 

On one of the trips to the Atrium tomorrow the girls tried their hand at painting...

After painting, some players from the Citadel basketball team came by to visit with the children.  The Citadel is Phil's alma mater so it was fun for our girls to meet athletes from the school.  Sarah Mei and Isabelle looked extra tiny next to these players, a few of whom made Phil, at 6'2", look short.

After we got back to our room, we had a visit from our favorite PA, Jen.  She assists Dr. Bradley and is my go-to person for every question I have that pertains to cardio.  We've also become friends over the past 5 years as the girls have been visiting MUSC for their surgeries.  It was fun visiting with her this trip and getting a picture of her with all three girls. 

And finally Dr. Bradley, the cardio-thoracic surgeon who has done all 3 girls' open-heart surgeries, took a minute out of his incredibly busy schedule to visit Lily Rose in her room and take a picture with the girls.  We can't say enough about this man and what a blessing he is to our family!! 

This morning we're waiting to go get another chest x-ray and then Lord-willing, we'll head home for a two week break before I return to MUSC with Isabelle for her Fontan open-heart surgery.

One More Day...

Today Phil, Sarah Mei and Isabelle made the 3 1/2 hour drive to Charleston to visit Lily and I in the hospital.  I am happy with the amount of food Lily is eating but the Dr.'s still want her eating more.  They told us this morning that an NG tube is still a possibility if her eating doesn't increase.  Our hope was if the other girls were here maybe it would encourage her to eat.

We took Lily Rose to the cafeteria for lunch.  She gets to make trips in a wagon with her chest tubes and drainage containers in tow.  She is hooked up to a portable telemetry box that monitors her heart activity and oxygen levels.  She felt a little more "normal" in the cafeteria and ate some baked chicken and mashed potatoes.  She also enjoyed a long play session in the Atrium with Sarah Mei and Isabelle.

I'm looking forward to the Dr.'s rounds in the morning to get their opinion on her eating today.  Her chest tube drainage is very low.  If they feel her eating is adequate, there is a chance they will pull the chest tubes tomorrow.

It was wonderful to see the old Lily Rose return today!  Her smile is beautiful!!  Thanks again for your prayers.

This was the day after surgery when all of the girls and Phil and I were staying at the Ronald McDonald house. 

And this is what happens on the farm when mom is at the hospital with one of the girls...oops...I think something is missing.  This photo just made me laugh.  It's a good thing we live on acreage with no neighbors.

Day 7 - Post Op

Thanks SO much for all your prayers and comments/suggestions on the blog.  Sorry for the silence here, but the last days were a bit stressful as I tried to figure out how to entice Lily Rose to eat and also tried to illicit a smile from my once cheerful girl.  The good news is....she finally did eat and smile!!

Two days ago the Dr.'s removed her mediastinum tube (the middle drain tube in her chest) and her pacing wires. I think that was the beginning of her turnaround.  I also  took Tommy's mom's advice (see Day 2 - Post Op comments) and pulled up a Chinese children's video on You Tube for her to watch.  While watching "Pleasant Goat and Bad Bad Wolf" - a Chinese cartoon - I was able to get her to eat some rice a few days again and even saw a few smiles

Yesterday we moved to the step-down floor.  She had a few more extraneous items removed...IV's, arterial lines, etc. and with that new freedom and a new private room, she decided that eating and drinking weren't so bad.  The Dr's want her to eat a high fat diet to see if her chest drainage will become chylous or not.  So last night Lily Rose enjoyed a large helping of french fries, this morning eggs and for lunch she ate a big bag of potato chips.  These are not meals that would make a mother proud but definitely high fat food choices.

This is Lily Rose on Day 2 Post-Op in PCICU.

On Friday I was blessed beyond words when Phil's little brother, Joel, and his wife, Penny, took a day off of work and drove two hours each way to visit Lily and I.  Not only did they offer wonderful encouragement to me, but they also came bearing gifts in the form of homemade, delicious food.  Penny knows what I love and included a selection of chocolate items and a Starbucks card too.  She also knew that we were having trouble getting Lily to eat.  She took time to cut up a hot dog and string it onto spaghetti  She was hoping by presenting fun food, Lily Rose would be more willing to eat.  What a precious gift to us!!

Then Friday evening Torie arrived in Charleston to keep me company for the weekend. She's such a blessing to me!  She not only did my laundry and sat with me at Lily Rose's bedside in PCICU, but she also made Starbucks runs for me:)

Now we're on Day 7 post-op and we just wait for the chest tubes to stop draining.  Thanks for continued prayers!

Day 2 - Post - Op

Last night was a late night for Lily and I.  She spiked a bit of a temperature which precipitated a series of changes in meds and a need to send off cultures on her blood, urine and fluids.  Thankfully her temperature is normal today.  It's hard to say if it's truly normal or if it's a combination of the Tylenol and Toridol that she's just keeping it in check.  Time will tell.

Her chest tubes continue to drain more than is anticipated at this stage of recovery.  Normally a procedure  is done with a Fontan called a fenestration.  This acts as a sort of pop-off valve for pressures.  In Lily's case the prevailing thought was her AVM's would offer the necessary pressure release so no fenestration was performed.  It is unclear whether the increased drainage is from the difference in procedure or just her body's way of coping with the surgery.  The Dr.'s are adjusting and adding meds to try to slow down the drainage.  Continue to pray for that.

Lily is also boycotting eating.  I was only able to get her to eat 2 or 3 bites of eggs and grits this morning and a few swallows of water.  She is a picky eater on a good day, and the surgery has left her with no appetite.  The dietician already suggested an NG tube today but thankfully Dr. Watson, one of my favorite fellows that was on the floor when Isabelle was in for her surgery last year, thoughtfully suggested that we give it another day.  Please pray that Lily will begin eating!! An NG tube would just NOT be a fun option for her! We are going to try some high fat/protein drinks.  However at lunch she refused to even take a sip  I think if she ever tastes the shake, it could be our ticket to getting adequate nutrition in her system.  I'll try again at supper.

Lily Rose is quite alert today and is off all pain meds except tylenol and oxycodeine.  Unfortunately she is quite morose and won't even consider smiling.  Continue to pray that we can get her to interact and smile.  It's pitiful to see our normal smiling girl so serious and depressed!

Thankfully we continue to be at peace even in the midst of the unknowns.   Thanks for your prayers!

Lily Rose - Day 1 Post-Op

Lily Rose had a good night.  We were thrilled that Joy, the nurse that took care of Sarah Mei and Isabelle on their first night after surgery, was on duty and took care of Lily.  She is always so sweet and makes special name signs for our girls (to put on their beds).  She also puts bows in their hair.  She said when she asked Lily if she wanted a bow, Lily gave a smile and an emphatic nod of the head. That was even with the breathing tube still in.  A girl just has to be a girl I guess!

They were able to extubate Lily around 5 a.m.  Her blood pressurse has been low since surgery.  Yesterday she was on 3 meds but today they have been able to wean her to one med.  Her oxygen levels are quite low.  Unfortunately this is a product of AVM's which are collateral vessels that were formed in her lungs due to having the Glenn (her 1st heart procedure) in place for so many years.  The vessels actually divert blood from being oxygenated depriving her body of the oxygen-rich blood it needs. Her oxygen levels before surgery were in the high 60's or low 70's.  Her Sat's today are in the mid-70's and that is probably where they will stay.

Normally after a Fontan oxygen levels jump into the 90's.  The hope in Lily's case is that now that she has hepatic blood flow (blood from the liver), the AVM's will slowly close off and her oxygen levels will creep up over the months to come.  We have no idea how long it will take or what her oxygen levels will reach.  We will just have to wait and see over the next year or more. Right now we are just thankful that she is stable and doing well.

They are keeping her fairly heavily medicated because she gets quite angry when she wakes up fully.  I think the combination of discomfort and disorientation from being in the hospital is just too much for this little girl that has only been in the States for 8 weeks.  She is being a trooper and either Phil or I are by her side all the time.  She definitely is comforted by our presence and for that I am thankful!

Please continue to pray for her as she makes her recovery.  Your comments on the blog and e-mails are such an encouragement to us!

Lily Rose is Out of Surgery

We just received an update and Lily is safely out of surgery.  They are getting her settled into the PCICU unit and then Dr. Bradley and Jennifer will come to talk with us about the surgery. 

Thanks for all your prayers!  The first hurdle is behind us.  Please continue to pray for a smooth 1st 24 hours of recovery and a quick extubation (removal of the breathing tube.)  The hardest thing for me about seeing the girls out of surgery is seeing them intubated.   It is just pitiful to see tears streaming down their face and to hear no sound coming out.  The sooner Lily is extubated the better for my mommy's heart.

Also pray for our family as we need to scramble to make arrangements for a much longer hospital stay.  A Fontan procedure will require at least a 2-3 week hospital stay versus a 5-7 day stay as originally planned. 

Torie and Michaela are always willing to step up to the plate and help Phil with caring for AnnaGrace, Michaela and Isabelle.  We are so blessed by both their servant's heart.  But it takes an emotional toll on everyone, especially Isabelle, not to have me around.

Also please pray that I'll have at least a week at home before I have to return for Isabelle's surgery on October 17th.  Her pre-op appointment is October 14th, so Torie and I will be heading back to Charleston the evening of Thursday, October 13th.  I love Charleston...but really...I don't want to see it from the window of a hospital room!

Lily Rose is Getting the Fontan

We just received an update from Jennifer, Dr. Bradley's PA.  She said Dr. Bradley decided to go with the Fontan.  This means Lily Rose will have a single ventricle repair but will have 2 pumping ventricles.  It is not as good a long-term "fix" as the Rastelli would have been but since she will still have 2 pumping chambers, it is still a blessing. It gives her heart more long-term pumping power than our sweet Isabelle's heart.  (Isabelle has hypoplastic left heart syndrome and only has one small working ventricle.)

We do not know why he decided to do a Fontan instead of the Rastelli but trust Dr. Bradley's judgement implicitly.  This is the fourth open-heart surgery he has completed on our girls.  He is scheduled to do Isabelle's Fontan next month.   He is one of the best pediatric cardio-thoracic surgeons in the nation, so if he thinks the Fontan is the best fix...we'll trust him!

Now we just wait while the extracardiac Fontan work is completed.  I think this will make the surgery  shorter than the initial six hour prediction.  It is a slightly more straight forward procedure than the Rastelli was going to be on her heart, given it's unique physiology. 

Thanks for your continued prayers.  None of this is a surprise to the Lord.  Afterall He created Lily in the womb and counts each hair on her head...

"For the Lord is the great God, the great King above all gods.

In His hand are the depths of the earth, and the mountain peaks belong to Him.

The sea is His, for He made it, and His hands formed the dry land.

Come, let us bow down in worship.

let us kneel before the Lord our Maker;

for He is our God and we are the people of His pasture, the flock under His care." 

Ps. 95:3-7

Two Hours into Open-Heart Surgery

We just received our 2nd surgical update.  They have made it through all Lily's scar tissue from her last surgery  (the Glenn, done at 8 months old, in China).  She is being placed on the heart/lung bypass machine now.

It is still too early in the procedure to determine which procedure Dr. Bradley will complete.  Please continue to pray for the entire surgical team as they attend to Lily Rose during the next hours of surgery.  Lily Rose is 2 hours into surgery and they anticipate surgery to take approximately 6 hours.

These photos are from Lily Rose's bath last night.  She was happy to rinse off all the CT contrast that "blew" all over her yesterday during a failed attempt of pushing her IV.  She and I were both covered with the lovely mixture of blood and contrast.  The combination is sticky.  As her nurse said...it could be used as "product" for your hair!

This morning as she waited to be taken back to the OR she enjoyed a little computer time.

"You hem me in - behind and before; you have laid your hand upon me.

Such knowledge is too wonderful for me, too lofty for me to attain." Psalm 139:5,6

Lily's in the OR

Dr. McGowan, the anesthesiologist, just took Lily back to the OR.  He was an answer to prayer.  He makes multiple trips to China on medical missions to offer orphan care.  He understand completely the need not to traumatize Lily and set-back her attachment process by taking her away from me if she was upset.  He administered the usual pre-meds for surgery to help her relax; however, she still had a firm grip on my shirt.  So he patiently waited until she warmed-up to him.  He played games with her...blowing raspberries on her belly, playing with a light wand, etc, until he had her giggling.  Then she happily let him pick her up and carry her off to the OR.  I was SO thankful for his understanding of the attachment process and for his willingness to delay his schedule to wait on her.  Very rare indeed.

In addition to Dr. McGowan's amazing patience with Lily, he was also an answer to prayer in my quest to advocate for orphans.  While in Shanghai, I met a little boy in the orphanage who was deemed unadoptable due to his severe heart condition.  Dr. McGowan is taking a medical mission's trip to Shanghai next month and has agreed to try to see the little boy and try to evaluate his health needs.  Please pray with me that I can gain permission for the medical team to get access to this little boy who has been heavy on my heart for the weeks since returning from China.  I am amazed at how the Lord is orchestrating all of this even in the midst of Lily's surgery!

Lily's actual surgery should begin any minute (around 8:30 a.m.).  Pray for Dr. Bradley as he begins this delicate procedure.  We are at total peace as we know she is in the hands of an excellent surgeon who has been gifted by the One is in charge of it all.

Lily's Pre-Op

We arrived in Charleston last night in preparation for today's all day pre-op appointment.   The girls think we are going on vacation because we are staying in a hotel for two nights while we wait for a room at the Ronald McDonald house.

One of the girls favorite rides...the luggage cart.

Sarah Mei is excited because she is using her new backpack that Michaela bought her in China.  Of course she brought a stuffed pony to keep her company.

The real fun began today, for Lily, with the pre-op appointment.  She was a trooper and patiently endured an EKG, an echo, two chest x-rays, a blood draw, a last minute IV and a CT Scan. Next came the visits from multiple Dr.s including the anesthesiologist, the PCICU Dr., and of course our two favorites - Jennifer, Dr. Bradley's PA and Dr. Bradley himself.

Christen, our nurse for the day, and Betsy, the child life specialist, made the day fun by giving Lily lots of toys and crafts.  Lily's favorite toy for the day was a baby doll, bottle and blanket that she could put in a little bag and carry with her everywhere she went.

Here Lily is carrying her baby to the CT Scan. 

Lily enjoyed reading a book while she waited for her chest x-ray.

Lily watched as Christen put co-band on the IV site.

This is Christen, the most amazing pediatric nurse, and Lily!!

Dr Bradley, the surgeon, was his usual calm, reassuring self. He explained the two possible surgical procedures he can perform on Lily's double outlet right ventricle heart defect. The first option is a bi-ventricular repair.  It is complicated because of some of Lily's unique physiology and also by the fact that she had a Glenn in China. The second option is for Dr. Bradley to do a Fontan repair which is "easier" in the short-term but only offers Lily a functioning single ventricle heart...not as good a long-term option. After hearing the pros and cons of both procedures, we opted for the bi-ventricular repair if possible. Of course the final decision will be Dr. Bradley's once he gets in and actually sees Lily's heart.


Please pray for wisdom for Dr. Bradley as he assesses Lily's heart anatomy.


Pray for God, the Great Physician, to guide Dr. Bradley's hands, as he performs this complicated surgery.

Please pray for there to be no complications with previous scar tissue, no heart arrhythmia's (and the subsequent need for a pacemaker), and the ability to use a large conduit in the surgery (to postpone her next surgery as long as possible).

August Updates

August was a busy month full of adjustments, more Dr.'s appointments AND AnnaGrace's birthday.  Our family is adjusting to three car seats, a child in diapers again, a shuffling of the pecking order among the children and general turf-warfare.  I'm the primary "turf". 

We have lots of moments like this....

followed by moments like this...

I think Isabelle is incredulous most of the time that she has been dethroned as the sole princess at the Horton farm.

I spend much of my day sitting on the couch reading books to the girls.  It is the only way that I have enough lap to go around.

Aside from the turf wars, I received GREAT news this month!!  After 7 months of tweaking my seizure meds and not driving, I got the nod from my neurologist that I can drive again.  My driving privileges were granted just in time as adding a 6th child with medical needs has certainly increased the Dr.'s appointments.

Lily is adjusting to farm life including becoming acclimated to all the farm animals....

Lily Rose was a little puzzled as to why this hen wandered onto our deck.  But for that matter, so was I???

In addition to accepting the chickens, Lily Rose decided she liked our horses as well.  Last week she even mustered up the courage to ride Popcorn...solo.  Of course she had to hold the reins all by herself. 

 and Sarah Mei took her job as assistant very seriously.

 
 
Other big news on the farm...
 
AnnaGrace had a birthday on August 18th.  It's hard to believe she's 11.  I don't understand why every one of my girls' birthdays catches me by surprise.  I just stand in awe of watching them grow into the godly young women God designed them to be.  Each with their own personality.  Their own strengths.  Their own giftings.  What a blessing!
 
 

 
We continued our tradition of taking the birthday girl out to lunch with just Phil and I.  AnnaGrace picked lunch at Mazatlan...a local Mexican restaurant.  The waiters all love it when we bring the girls in because they like to practice their Spanish.  AnnaGrace is learning Spanish with Rosetta Stone.  Nothing like an Asian child trying to speak Spanish?? 

In the evening we ate AnnaGrace's favorite meal...grandma's tacos, opened presents and dined on a Baskin Robins ice cream cake. 
 
 

 
  Can you tell life is a little chaotic around here by the candle on AnnaGrace's cake??  Yes that is a taper candle...not a cute number candle, not a trick candle that won't blow out, not a sparkly candle...but a taper candle.  Well at least I made a memory that our family won't soon forget:)
 

 
 
Aside from Annie's birthday, probably the highlight of my month was a "Welcome Home" shower that some of the ladies' at our church organized for Lily Rose and 2 other girls just home from Ethiopia.  Not only was it so thoughtful that they wanted to celebrate the homecoming of these three girls, but one of the girls was part of the Summer of Hope program that we helped with two years ago.  
 
 

 
To see Helina home with her family fills me with so much joy!  Words can't express my thanksgiving to the Lord for bringing her home to her forever family.  The great part of the story is after she went back to Ethiopia, her adoptive family found out she had a little sister, and they ended up adopting both of them.  So now Helina and her sister (pictured in the photo below) are home together.  We truly do serve an awesome God!
 

 

 

Many things went wrong with the Summer of Hope program which I'm not privy to share here.  And my heart is broken in SOOO many ways.  But I rest in the Lord that even this was part of His plan and I praise Him that six of the children are now adopted and back here in Charlotte including the little girl we hosted!
 
 
Below is a photo of Helina, Lidiya and Emma (Meskerem when we hosted her) reunited in the States this summer....what BEAUTIFUL smiles!!!
 

 
I am thankful, too, to be part of a church body that embraces adoption as His story!  Thanks ladies for the wonderful shower.
 

 
August was a full month and September and October will be busy in a different way.  Lily is slated to have her open-heart surgery on September 20th. We are praying that Dr. Scott Bradley, the cardio-thoracic surgeon, will be able to perform a bi-ventricle repair on Lily's heart.  After looking at the cath results that is his intent.  Please pray with us that all will go as planned.  Dr. Bradley told us to plan for a 5-7 day hospital stay with Lily's surgery.
 
After her surgery we'll have a few weeks home in Charlotte before we return to MUSC in Charleston, SC for Isabelle's Fontan open-heart surgery scheduled for October 17th.  Dr. Bradley told me to plan on a month long stay for that surgery.  Isabelle had some draining issues with her Glenn which predisposes her to drain longer with the Fontan.  My prayer is that our stay will not be a full month. 
 
Life is full and busy and the turf wars are intense and hilarious and tiring, and I am loving life and falling into bed exhausted at night!  Thank you Lord!!

Lily's Heart Cath Results

Lily's heart cath is complete and the results are excellent!  Now we are just hanging around the hotel waiting for 24 hours to pass, so we can head back to Charlotte.

Lily needs to lay still for 24 hours post cath (easier said then done).  Torie and Isabelle made the trip with us to keep us company.  They are making trips to the pool while Lily and I sit in the hotel and watch DVD"s.  The girls are also enjoying time coloring in their new coloring book.

Dr. Bandisode gave us great news!  Lily has 2 working ventricles, and if all goes well, Dr. Bradley will be able to do a bi-ventricle repair on Lily's heart.  This means she will have close to normal heart anatomy once her open-heart surgery is complete.  This also means she can have her surgery soon instead of waiting for surgery. 

This news is an answer to prayer and could not have been better!!

Tomorrow we'll drive home to Charlotte and look at our calendar to coordinate Lily's open-heart surgery around Isabelle's open-heart surgery which is already scheduled for September.

Home Two Weeks & Heart Cath Next Week

We've been home two weeks, and we're getting into the routine of life.  Polishing toe nails.  Dressing up like princesses.  Riding horses.  You know...the important things! 

While the girls and I have been playing, Phil has fixed everything that broke while we were in China. 

When deciding to adopt, you can rest assured the enemy will attack!  Our attack came in the form of a series of broken items.  A 3rd story plate glass window in our house which broke inexplicably.  Dishwasher.  Back window and door in our vehicle.  Washing Machine.  I'm thankful I married a man who can fix (almost) anything.  We did have to purchase a new washing machine, but he was able to repair the rest of the items.

Phil's teachers started full-time this past Monday and his students begin next Monday, so I decided to restart our homeschool this week too.  We managed to fit in a few weeks of school before I left for China, and today we had fun taking our "first day of school" photos.

After our photo session AnnaGrace practiced being an archaeologist and dug for a treasure in a pyramid while the little girls painted.  And Lily Rose seemed to enjoy her first day of homeschool too!

Next week Torie, Isabelle, Lily and I will head to MUSC in Charleston for Lily's heart cath on Tuesday.  We're praying it will reveal why her oxygen levels are so low and also give Dr. Bradley, the heart surgeon, the necessary information to determine which heart surgery he will be performing on her in the future.

I can't wait for everyone on staff to meet Lily.  The staff at MUSC are "old friends" now and Lily will surely charm them with her outgoing personality!