Back On-Line

Since Lily Rose's adoption in July, and Lily Rose and Isabelle's surgeries' in September and October (respectively), we've been settling into a new normal with a 6th daughter.   I purposed to "go off the grid" for a season and stepping away from the majority of blogging, e-mailing, facebooking, phone calls, socializing etc. was a nice break while I concentrated on family life.  But I'm back on-line....

Here's a run-down of the major events in the last 6 months...

Michaela celebrated her 16th birthday.

Lily Rose celebrated her 4th birthday.

Lily Rose is a cheerful, easy-going addition to the family with a bit of dramatic flair. We jokingly refer to her as Scarlet on occasion (i.e. Scarlet O'Hara) as she doesn't pass up the chance to be the center of attention! On our errands to stores, she is quick to wave to everyone and "talk" to them in a mix of English and made-up words. She has forgotten the majority of her Shanghinese but still doesn't know enough English to fully express herself. It doesn't deter her. She just makes up her own words.

AnnaGrace continued her love for acting by participating in our church's Christmas play and is now in the midst of a five month preparation for Tom Sawyer.

We celebrated Isabelle's two year Gotcha Day...at our favorite Mexican restaurant, of course!

and Sarah Mei celebrated her 6th birthday.

It's been a busy six months!

One of my favorite pictures from Christmas  is below.  It's especially precious because, when Lily Rose joined our family, Isabelle had a LONG three month adjustment to being displaced as the youngest.  (Even though chronologically Izzy is younger than Lily Rose by six months, developmentally she is far more advanced.) Thankfully Izzy is over the adjustment now and tells me that Lily Rose is her "buddy".

This picture captures their relationship now.  It's SO sweet to see them playing together...

In the midst of all the chaos of having an 11, 6, 4 and 3 year old, I'm SO thankful for our "Big" girls who are so on-board with our crazy family!  Just the other day Michaela said, "Mom it's been 6 months, isn't it time to start filling out paperwork for another heart child?'  I love that Torie and Michaela love their little sisters and understand the calling the Lord has laid on Phil's and my heart!  "Thanks" just isn't adequate!!  I love you girls!!

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!