We have colds!

Our family chose last week to start quarantine which would give us 3 weeks prior to AG's heart surgery to stay and be well.  However, the day we started quarantine Zachary became symptomatic of a cold.  Nothing serious, just a common cold with the runny nose, stuffy, nose and cough.  As you would expect, Anna Grace and I have also caught the cold. (Sniff, sniff, cough)

I called Dr. R today to let him know about AG's cold just to be sure it's not going to be an issue still having surgery on  November 9.  I left a message with his nurse and haven't heard back from him yet.

So, as soon as I know something I'll post an update.  As long as the cold doesn't turn into anything more serious - like an ear infection or sinus infection then she should be over it about a week before surgery, but I'm not sure if that's OK or not. Or... if they might want to start her on an antibiotic just to head things off at the pass so to speak.

So, in the meantime, the kids and I are just hanging around the house doing homeschool in the morning and spending our afternoons playing in the backyard and having a campfire.... everyday!

I did mention to the kids the other day that I think a swing set might be a good investment for our backyard so I think I'll start checking out craigslist to see what I can find.

Thank you all for continuing to pray for us!  I'll keep you posted on what Dr R says.

We know that God is soverign and we trust His timing in this!

Cardiology & Quarantine

Anna Grace had a cardiology visit on Tuesday.  She didn't cooperate as well as last time, but she did OK during the visit.  There was no echo this visit, so it was much quicker than last time.  The only thing that changed from last time was that her O2 sats were 85 this week.  So WAY up from the last visit.  Dr. R said that these heart kids are very sensitive and that if she had a little cold or hadn't had enough water to drink or any small thing could affect her sats and make them drop.  So, no real explination as to why they were so low last time, but on Tuesday they were 85 and I was thankful :)

So, Dr. R went through the Fontan surgical explination with me one more time.  Basically, Dr. B will attach her inferior vena cave to her pulmonary artery.  Dr B will also have to do a pulmonary patch-plasty on her pulmonary artery where they found the "kink" during the heart cath.  The Fontan that Dr B will do will be a lateral tunnel and he will put an ASD acculuder from the lateral tunnel to her right atrium as a "pop off" for overflow.  In 6 months if scar tissue has not closed the ASD acculuder (aka a fenestration) then she will need a heart catherization to close the fenestration in about 6 months - 1 year.

Dr R also told me when to stop her medications and he gave me the prayer line number to his Church and told me to call them and have his Church praying for AG.  (I guess the doctor/patient confidentiality won't let him do it).  So, it was bitter-sweet to walk out of his office Tuesday monring - I know we won't see him again until after the heart surgery.  He is such a great docotr, I wish he could go to MUSC and do this with us!

Tuesday was also our last day with our homeschool co-op.  They were all so sweet and got us an awesome care package of goodies to take to the hospital with us and some spending money to use while we're there.  A most unusual gift that they gave us...... a crayfish dissection kit and an owl pellet dissection kit.  Those are two of the Science experiments that we are going to miss during our quarantine and hospital visit.  I know Zachary will be VERY excited about those gifts - although I have to admit that I was really glad when Brian told me that he would be happy to do the experiments with Zachary.  (I was really not looking forward to the crayfish dissection)!  But the group was so very supportive and loving and some of the children drew pictures and handmade bracelets for the kids.  It was just so very touching and humbling to me.  I am truly thankful for this group of families to be doing school with :)

So Wednesday (yesterday) began our quarantine in preparation for surgery.  Of course, to begin our quarantine Zachary has come down with a cold.  Yesterday he started sneezing and then started with a super runny nose.  I fully anticipate Anna Grace to get the cold since we are all trapped here in the house together, but with 3 weeks until surgery I feel pretty confident that even if she gets the cold it will be able to run its course with time to spare before surgery.  But please, if you think about it, pray that she wonj't even get the cold and that we can all stay healthy for the remainder of our period of quarantine.

So, I think that is the most update for now.  Thank you for praying for our family as we head closer to surgery on November 9.  We trust the Lord with Anna Grace and His plans for her, but we are still parents and are beginning to feel the serious weight of what is about to come.  As you can imagine.  Thank you for following our story.

Quarantine

Sorry for the delay in posts.  Anna Grace has a cardiology visit this coming Tuesday just to be sure her sats are holding steady and not declining anymore.  After that we will begin the DREADED quarantine!!!!!  Believe it or not surgery is just 3 1/2 short weeks away and there have been lots of colds and respiratory viruses going around so it is time for us to go ahead and start our season of quarantine.  It is not fun, but it is necessary.  Thank you all for continuing to pray for Anna Grace as we begin our very near approach to the Fontan.

Musing from A Heart Dad

My husband posted this on his Facebook page the other day and I thought I would share it here because let's face it.... you always hear from me and most heart blogging is done from the Mother's prespective, but our husbands are Heart Dads too.  He is an excellent writer as you will see and I hope that we hear from him here again soon :)

 daughter’s life is based in her O2 SAT. So is mine I suppose, and so is yours. But really let’s face it; no one is checking our O2 SATs. And, by the time they are checking how hard we are breathing we will more than likely have lived a long and healthy life. Anna is 2. More specifically, she is 33 months old. A baby....“Dropped” is a word that drops like a 100 pound weight. Watch out because those kinds of drops can break something. Like toes, or a spirit. I would rather have a broken toe than a broke spirit. From a father’s point of view “dropped” hits you in the gut. Wait….where did my wind go….cannot breath….God help. It reminds me that as much as I want to help my Sweetie Pie, I have not the power or the wisdom to lift the weight of the reality of her heart condition. This is my reality. This is where I live....I have to be honest, the question why does come to mind. But, as soon as the question starts to form, I hear these words “but that the works of God might be displayed in [her].” (John 9:3) attack the word WHY. Why do those words from John 9 not “drop” like a 1000 pound weight? They should, shouldn’t they? That quote is God’s word, God in flesh speaking. Those words should pick me up and carry me away. Do you ever feel like running away? I can relate…But, I don’t run. It makes my back hurt. Also, where am I going to go? God is God and I cannot escape Him and His providence. He has ordained from on high the road I’m on that is running through this valley. This life I'm living is my flow. You know what I'm talking about BG. It is an inside conversation. And, I would rather be in His pre-ordained valley than to be on the world’s mountain top. Did not someone say, “What does it profit a man to gain the whole world and then lose his soul.” Sure, it seems attractive to be living a life that has not a child with a heart defect, but then that would not be the life that God purposed for me. That life would be a lie. A reality I cannot even conceive in my mind....Did I tell you a friend posted today that an album “dropped” today? Did I tell you my baby’s SATs “dropped” today? Did I tell you the word “dropped” makes me feel the weightiness of my life today? Did I tell you seeing Anna Grace smile and laugh “drops” such joy in my life that I would do it all over again a billion times. Did I tell you her heart function is good today? Did I tell you God is good every day? He has been very careful not to crush my toes.“Hear my prayer, O LORD; let my cry come to you!”

I never do this, but here is a muse..............

 

A friend posted on Facebook that a new album "dropped" today. The word "dropped" makes my mind race. Racing this way....Something else that "dropped" today, Gracies SATs – they should be high 90’s, she and we can bear 80’s, but today they moved into the 70’s. It is a strange world when you live and see life as numbers.

 

But, let’s face it, my daughter’s life is based in her O2 SAT. So is mine I suppose, and so is yours. But really let’s face it; no one is checking our O2 SATs. And, by the time they are checking how hard we are breathing we will more than likely have lived a long and healthy life. Anna is 2. More specifically, she is 33 months old. A baby...

 

"Dropped" is a word that drops like a 100 pound weight. Watch out because those kinds of drops can break something. Like toes, or a spirit. I would rather have a broken toe than a broke spirit. From a father’s point of view "dropped" hits you in the gut. Wait….where did my wind go….cannot breath….God help. It reminds me that as much as I want to help my Sweetie Pie, I have not the power or the wisdom to lift the weight of the reality of her heart condition. This is my reality. This is where I live....I have to be honest, the question why does come to mind. But, as soon as the question starts to form, I hear these words "but that the works of God might be displayed in [her]." (John 9:3) attack the word WHY. Why do those words from John 9 not "drop" like a 1000 pound weight? They should, shouldn’t they? That quote is God’s word, God in flesh speaking. Those words should pick me up and carry me away.

Do you ever feel like running away? I can relate…But, I don’t run. It makes my back hurt. Also, where am I going to go? God is God and I cannot escape Him and His providence. He has ordained from on high the road I’m on that is running through this valley. This life I'm living is my flow. You know what I'm talking about BG. It is an inside conversation. And, I would rather be in His pre-ordained valley than to be on the world’s mountain top. Did not someone say, "What does it profit a man to gain the whole world and then lose his soul." Sure, it seems attractive to be living a life that has not a child with a heart defect, but then that would not be the life that God purposed for me. That life would be a lie. A reality I cannot even conceive in my mind....Did I tell you a friend posted today that an album "dropped" today? Did I tell you my baby’s SATs "dropped" today? Did I tell you the word "dropped" makes me feel the weightiness of my life today?

Did I tell you seeing Anna Grace smile and laugh "drops" such joy in my life that I would do it all over again a billion times. Did I tell you her heart function is good today? Did I tell you God is good every day? He has been very careful not to crush my toes."Hear my prayer, O LORD; let my cry come to you!"
 

daughter’s life is based in her O2 SAT. So is mine I suppose, and so is yours. But really let’s face it; no one is checking our O2 SATs. And, by the time they are checking how hard we are breathing we will more than likely have lived a long and healthy life. Anna is 2. More specifically, she is 33 months old. A baby....

“Dropped” is a word that drops like a 100 pound weight. Watch out because those kinds of drops can break something. Like toes, or a spirit. I would rather have a broken toe than a broke spirit. From a father’s point of view “dropped” hits you in the gut. Wait….where did my wind go….cannot breath….God help. It reminds me that as much as I want to help my Sweetie Pie, I have not the power or the wisdom to lift the weight of the reality of her heart condition. This is my reality. This is where I live....I have to be honest, the question why does come to mind. But, as soon as the question starts to form, I hear these words “but that the works of God might be displayed in [her].” (John 9:3) attack the word WHY. Why do those words from John 9 not “drop” like a 1000 pound weight? They should, shouldn’t they? That quote is God’s word, God in flesh speaking. Those words should pick me up and carry me away. Do you ever feel like running away? I can relate…

But, I don’t run. It makes my back hurt. Also, where am I going to go? God is God and I cannot escape Him and His providence. He has ordained from on high the road I’m on that is running through this valley. This life I'm living is my flow. You know what I'm talking about BG. It is an inside conversation. And, I would rather be in His pre-ordained valley than to be on the world’s mountain top. Did not someone say, “What does it profit a man to gain the whole world and then lose his soul.” Sure, it seems attractive to be living a life that has not a child with a heart defect, but then that would not be the life that God purposed for me. That life would be a lie. A reality I cannot even conceive in my mind....

Did I tell you a friend posted today that an album “dropped” today? Did I tell you my baby’s SATs “dropped” today? Did I tell you the word “dropped” makes me feel the weightiness of my life today? Did I tell you seeing Anna Grace smile and laugh “drops” such joy in my life that I would do it all over again a billion times. Did I tell you her heart function is good today? Did I tell you God is good every day? He has been very careful not to crush my toes.

“Hear my prayer, O LORD; let my cry come to you!”

 

daughter’s life is based in her O2 SAT. So is mine I suppose, and so is yours. But really let’s face it; no one is checking our O2 SATs. And, by the time they are checking how hard we are breathing we will more than likely have lived a long and healthy life. Anna is 2. More specifically, she is 33 months

 

daughter’s life is based in her O2 SAT. So is mine I suppose, and so is yours. But really let’s face it; no one is checking our O2 SATs. And, by the time they are checking how hard we are breathing we will more than likely have lived a long and healthy life. Anna is 2. More specifically, she is 33 months old. A baby....

“Dropped” is a word that drops like a 100 pound weight. Watch out because those kinds of drops can break something. Like toes, or a spirit. I would rather have a broken toe than a broke spirit. From a father’s point of view “dropped” hits you in the gut. Wait….where did my wind go….cannot breath….God help. It reminds me that as much as I want to help my Sweetie Pie, I have not the power or the wisdom to lift the weight of the reality of her heart condition. This is my reality. This is where I live....I have to be honest, the question why does come to mind. But, as soon as the question starts to form, I hear these words “but that the works of God might be displayed in [her].” (John 9:3) attack the word WHY. Why do those words from John 9 not “drop” like a 1000 pound weight? They should, shouldn’t they? That quote is God’s word, God in flesh speaking. Those words should pick me up and carry me away. Do you ever feel like running away? I can relate…

But, I don’t run. It makes my back hurt. Also, where am I going to go? God is God and I cannot escape Him and His providence. He has ordained from on high the road I’m on that is running through this valley. This life I'm living is my flow. You know what I'm talking about BG. It is an inside conversation. And, I would rather be in His pre-ordained valley than to be on the world’s mountain top. Did not someone say, “What does it profit a man to gain the whole world and then lose his soul.” Sure, it seems attractive to be living a life that has not a child with a heart defect, but then that would not be the life that God purposed for me. That life would be a lie. A reality I cannot even conceive in my mind....

Did I tell you a friend posted today that an album “dropped” today? Did I tell you my baby’s SATs “dropped” today? Did I tell you the word “dropped” makes me feel the weightiness of my life today? Did I tell you seeing Anna Grace smile and laugh “drops” such joy in my life that I would do it all over again a billion times. Did I tell you her heart function is good today? Did I tell you God is good every day? He has been very careful not to crush my toes.

“Hear my prayer, O LORD; let my cry come to you!”

“Dropped” is a word that drops like a 100 pound weight. Watch out because those kinds of drops can break something. Like toes, or a spirit. I would rather have a broken toe than a broke spirit. From a father’s point of view “dropped” hits you in the gut. Wait….where did my wind go….cannot breath….God help. It reminds me that as much as I want to help my Sweetie Pie, I have not the power or the wisdom to lift the weight of the reality of her heart condition. This is my reality. This is where I live....I have to be honest, the question why does come to mind. But, as soon as the question starts to form, I hear these words “but that the works of God might be displayed in [her].” (John 9:3) attack the word WHY. Why do those words from John 9 not “drop” like a 1000 pound weight? They should, shouldn’t they? That quote is God’s word, God in flesh speaking. Those words should pick me up and carry me away. Do you ever feel like running away? I can relateBut, I don’t run. It makes my back hurt. Also, where am I going to go? God is God and I cannot escape Him and His providence. He has ordained from on high the road I’m on that is running through this valley. This life I'm living is my flow. You know what I'm talking about BG. It is an inside conversation. And, I would rather be in His pre-ordained valley than to be on the world’s mountain top. Did not someone say, “What does it profit a man to gain the whole world and then lose his soul.” Sure, it seems attractive to be living a life that has not a child with a heart defect, but then that would not be the life that God purposed for me. That life would be a lie. A reality I cannot even concei

Did I tell you a friend posted today that an album “dropped” today? Did I tell you my baby’s SATs “dropped” today? Did I tell you the word “dropped” makes me feel the weightiness of my life today? Did I tell you seeing Anna Grace smile and laugh “drops” such joy in my life that I would do it all over again a billion times. Did I tell you her heart function is good today? Did I tell you God is good every day? He has been very careful not to crush my toes.

“Hear my prayer, O LORD; let my cry com

Cardiology Appointment Re-cap

Today Anna Grace had a cardi9ology appointmnet.  During the last visit Zachary went with us and really helped her be brave for the doctor, but today Zachary wadn't with us so it was just AG and I.  I was a little nervous about how she would behave without her brother, but there wasn't any need for me to be concerned because she was calm and cooperated with almost everything Dr R asked of her.  Everyone was impressed with what a big girl she is becoming and I am thankful that the Lord is helping her to be more calm during her doctor appointments.

AG's sats today were low.  They were running mostly 75.  They did get up to 77 for a split second, but pretty much hovered at 75.  So, although we weren't scheduled for an echo those low sats bought us a trip to the echo room.  AG cooperated for that and after Dr R had a chance to review the echo he said that her heart funtion appeared good.  (Thank you Lord!)

So, Dr. R is going to call her surgeon in Charleston (Dr B) to let him know about today's appointment to be sure he is still comfortable with waiting until November 9 for surgery.  Dr. R feels comfortable waiting until Nov 9, so unless Dr B really doesn't like what he sees then we still have a November 9 surgery scheduled.

We went ahead and scheduled an appointmnet to go back in 3 weeks for another check-up and possibly another echo depending on what her sats are.

As for her weight.... she was 32.1 pounds.  Still not the desired 33 pounds, but the weight issue seems to be secondary now in light of the declining sats.

So, we are home now and digesting the reality of a child with congenital heart defects and the upcoming surgery which is staring us in the face.  Sometimes it all seems so normal to us and other times it still feels like a bucket of cold water has just been thrown on us.  I think today is a cold water day.

Please continue to pray for Anna Grace and our family.  Thank you all for following our story.  I took some pictures today and will try to get them uploaded later this week.

Hiking, Pacheesi and Chuck E Cheese!!!

I know I have promised you pictures for quite some time and I am now delivering!  Here are some picture from our most recent endeavours.  We have been having lots of fun spending time together as a family. 

Before you get to the pictures.... I want to let you know that Anna Grace has a cardiology appointment coming up on Tuesday so please be praying for her to cooperate with Dr. R so that he can get a good look at her heart.  I believe....... that this will be our last cardiology check-up until surgery which is still scheduled for November 9.  Thank you for continuing to follow our story even though I have been a very bad blogger recently!  Enjoy the pictures!

(Note:  Anna Grace was on my hip during all these hikes... I think I'm going to need an adjustment from a good chiroprator soon!!!)

 

This was a warm muggy day that we decided to go hiking on a local tril.  The trail is about 1.5 miles long.  It is an easy hike and it has an awesome wetlands with a boardwalk.  The kids did great and really enjoyed the wildlife at the wetlands.  So thankful I remembered the bug spray before we started out on this hike!

 

 

 

This was a leisurley walk we took at a local botanical garden.  This picture was taken at the "meditation" garden.  Although there is not much meditating going on with my two wild children running around.  Thankfully we were the only ones in the garden at the time!  We forgot the bug spray this day and paid dearly for it!

 

 

 

This hike was done at a local park.  I had no idea that there were even hiking trails at this park!  We had actually gone to play on the playground, but the sun was so hot this day and there was no shade covering the playground that we just decided to start walking in the woods behind the playgound.  We found the trail which ran parallel to a little stream.  There was also a wood bridge that crossed the little stream.  The kids really enjoyed walking near the stream and listening to the water.  I am thankful that we discovered this great easy trail and I am looking forward to hiking it again when it cools down!

 

 

 

 

 

Mee-Mee came to visit us one day last week and brought us a Parcheesi game.  I don't think I ever played Parcheesi as a child but we have played several times since we got the game.  Zachary has taken to it and has really enjoyed playing.  He keeps beating me and he LOVES to beat his Mom.  Smart boy! 

 

 



 

No, we're not at the rodeo.... we finally took the kids to Chuck E Cheese.  This is a germaphobe's worst nightmare.  I think I dread it as much as going to the sick waiting room at the doctor's office.  nevertheless, I promosed Zachary LAST WINTER that I would take him to Chuck E Cheese this summer.  He has patiently waited and has continued to ask me ALL SUMMER when I was going to take him to Chuck E Cheese (thanks to the numerous Chuck E Cheese commercials which continue to remind him).  Since the summer is almost over, it was time!  Brian was able to take some time off work on a weekday morning and so we headed to Churck E Cheese at 9:30 am on a weekday.  As I suspected we were the only ones there (which was what I had hoped for)!  We had the place all to ourselves and the kids had a ball!

 

 

Zachary enjoying the place... "Where A Kid Can Be A Kid"!  After we got home the kids were stripped down and thrown into the bathtub for a good scrub.  They didn't mind though, they really did enjoy their time at Chuck E Cheese and I'm thankful we were able to go.

We Are Still Here

I'm sorry that I haven't posted in quite some time.  We have been busy with school and last week Zach and Anna Grace both battled with strep throat.  A doctor visit and two prescriptions of antibiotics later and everyone is feeling much better! 

We have been doing a good bit of small hikes here locally.  I have a passion for hiking so my kids and I try to do that quite a bit in the Fall and Winter.  This year it has been a bit more challenging though.  In years past I have had a hiking backpack that Anna Grace rode in on my back, but now at a whopping 32 + pounds I can't hoist the backpack with her in it onto my back safely so I am no longer able to use that.  So now, I just have to hike with her on my hip. 

It's managable, but honestly it is a little rough on my back.  I can tell I'm not as young as I used to be!  With all the hiking latley I am able to see a big difference in Anna Grace as far as her cardio level is concerned.  She simply can't walk.  She just gets so winded and can't catch her breath so mostly she just stays on my hip.  It is a big indicator to me that it is time for the Fontan.

Speaking of Fontan.  We go on Tuesday (Sept 25) to see our beloved Dr. R for an echo, EKG, sat check and of course a weight check.  This appointment will really be her last one before the scheduled surgery in November so I have to admit I am a little anxious about this appointment,.

I will definatley post next week after her appointment to let you know what Dr. R said and if we are still planning for a November 9 surgery.

Between now and then I hope to get some fun hiking pictures posted for you!  Thank for continuing to follow our story and for continuing to pray for Anna Grace :)