Long Overdue Updates

My last post was from March 20th...so much time has gone by and so many great memories have been made.

This will be a post in pictures and will end with our latest cardiology visit...be sure to check it out because we are preparing for a summer Fontan.

April

Easter Fancy - she loves her hats!

May

Swinging and fashioning another cute hat!

June

Puppy love...yes, that is a little puppy.  Check out the nail polish...she did it herself...even her knee got a little!

July

Hope and daddy...just hanging out.

August

Swimming at Lodi Park

September

Happy 4th Birthday

So...we did have the Fontan talk at Hope's appointment this week.  She had appointments all day at the Clinic, so we got to spend time in many areas...the biggest news is the Fontan.  She will most likely have her Fontan next summer.  We will have our next appointment in March.  At that time, we will schedule the pre-Fontan cath.  This will tell everyone the condition of her heart...what they can't see on the echo.  It will tell everyone whether she is a good candidate or risky for the Fontan.  They may balloon her left pulmonary artery again or put in a stent or do nothing.  Depending on what they do in the cath lab will determine how long we need to wait for the Fontan.  My preferred date for her Fontan is June 18, 2014.  She gets out of school at the end of May.  We want to have some time to have fun during the summer.  We also want to make sure and celebrate Paul's 6th birthday.  I know things will probably get in the way and the date may change, but I want her to have the Fontan before July 1st.  Residents and Fellows change in July and I would prefer to have the more experienced Residents and Fellows on service when she has her Fontan.

I will try and update more often...especially because the Fontan makes me extremely nervous and I am sure I will need to get a lot off my chest before next summer.  Hope also needs to try and gain a few more pounds.  She is still around 26 pounds and they would like to see her closer to 30 pounds going into the Fontan.

Great Visit

We had our follow-up appointment today to do a weight check and a pulse ox check.  At Hope's last cardiology and nephrology appointments, her weight was down to a little over 25 pounds (from a really bad stomach flu that lasted much longer than I ever wanted).  She had gotten up to almost 27 pounds, so it was much lower than we were expecting.  Her pulse ox was also pretty low and there was talk about a possible Fontan this summer.  I keep hoping to hold off for one more year and have the Fontan next summer.  Her pulse ox at her appointment didn't go above 77, but today it held steady at 84.  I knew I didn't really need to worry because her physical therapist at school checks it at least once a week.  It was 87 this week, so I knew it would be fine.  I also decided to weigh her at home before we left so I wouldn't be surprised.  I was still happily surprised when she weighed 26 pounds 2 ounces...much better than I was hoping for.

After we were done with her appointment we had to go down to the lab for more blood work.  Her calcium was high with the last test, so they wanted to re-test her blood.  I have no idea what the results will be, but I am not worried too much about her calcium.  I look at her BUN and Creatnine to see how her kidney's are functioning.  So far the last few times her kidney numbers have looked good.  Please say a prayer for good results...I will try and post them when I get them.  All of her results are available to me online...which is really nice.

Hope is dressed up in one of her Easter outfits.  She is super cute and loves dressing up.  She is definitely a girly girl and I am going to need some girly help with her.  I am so far from a girly girl...like no makeup, jeans, hair in a pony kind of person.  She would be in a dress and dress up shoes every day.  Of course, she hates to have her hair done, but looks so cute in bows and ribbons.

Blood Test Results

The above is her renal panel function test.  It is a blood test that checks how well her kidneys are functioning.  Her Nephrologist is happy about the BUN and Creatnine...which are the major markers for kidney failure.  Based on the numbers, her kidneys are still working pretty good (or her one is working better than expected).  We do have to go back in 2 weeks to check on her Calcium levels because they have never been high and there is a little concern.  I am thinking it is all the cheese and dairy products she is starting to eat.  She probably eats 5 pieces of cheese a day.  I don't really want to limit her cheese either because it is something she loves.  Hopefully it is a fluke in the test and we don't have to worry about it.

I am breathing a sigh of relief with these results because it means we don't really have to worry about her kidneys for at least another 6 months.  Hopefully we will get some good news when we go back for her O2 and weight check!

And the results are

inconclusive.  I wish I had more to tell everyone, but I don't.  Her echo and EKG looked just like the last one.  She looks good...although she needs to keep gaining.  Her sats (oxygen saturation level) were down...the highest they got today was 80 and that is low for Hope.  She usually sits around 83-88.  This was pretty discouraging and made me realize that I really can't tell what is going on just by looking at her.  I would swear that her sats were in the 80s...she just looks really good to me.  We have to get her sats checked in 2 weeks in Medina along with a weight check.  We are really hoping she is getting over or starting to get a cold and that they will be back to normal in a couple weeks.  If not, we will have the Fontan talk.  So...pray that her sats are back to normal...she definitely looks better than 77-80.

After Cardiology, we got to head to Nephrology (kidney doctor).  We saw a new doctor today and I absolutely love her.  She is super smart and spent a lot of time going over everything.  She also got to look at some clinical trial stuff I printed and brought along with me.  We talked about the bio-artificial kidney that is in trials for adults.  Hope even liked her a lot...which means so much.

Big John (the BEST phlebotomist in the world) was not there today, so we didn't get labs done.  We are going to head to Medina tomorrow and get her blood drawn.  There is a great lady that works there that can find a vein and it doesn't bother her.  Hopefully the results will be good with her kidney numbers.  So I guess that is another prayer from everyone...that her kidney numbers look good.

I will be catching everyone up when I get the results and definitely when we get her sats checked in Medina.

Appointments Tomorrow

We are off for a long day of appointments tomorrow.  I know there are a lot of mommies out there that spend a lot more time at appointments than we do, but they always make me so nervous.  I never know if they are going to see or find something that I don't see everyday.  I worry that we are going to have the Fontan talk...I am praying hard that we can wait one more year.  The thought of having to go through another surgery scares me like nothing else ever has.  I worry that her kidney function is suffering and that I can't see it.  So many worries before an appointment and I hate it.  She is also older, so she knows a little more about where we are going and why.

I will post an update tomorrow night...please keep us in your thoughts and prayers tomorrow...it is going to be a long day!

CHD Week Wrap Up

I had to post one more day...I am actually back to posting after a break and realize I miss it so much.  The above was posted by The Cleveland Clinic Children's Hospital Community Facebook Page.  I feel like my little girl is a star!  Following is the information that was posted as well:

Our LITTLE HERO today is HOPE... 

Hope was born on September 14, 2009 in Akron, Ohio with Hypoplastic Left Heart Syndrom and Bi-Lateral Renal Agenesis. Hope had the Norwood on September 30, 2009 at Cleveland Clinic Children’s Hospital. She was lucky to have another heart defect (PDA), so her ductus was open and she did not experience any complications from waiting so long to have her Norwood. We finally took her home on the 28th of October; she was just 6 weeks old, but doing so much better than anyone ever expected. Hope had the Hemi-Fontan on March 8, 2010. She spent an amazing 6 days in the hospital for her Hemi-Fontan and came home so much less blue (not yet pink, but definitely not as blue/gray). She has stenosis in her left pulmonary artery, so she has had a few caths to balloon the artery Hope is currently in preschool and doing great!

We thank Hope and her family for sharing this story during Congenital Heart Disease Week! 

And this is a picture of my princess in her "I Believe in Miracles because I am One" Mended Little Hearts shirt.  She wore this to her Valentine's Day Party to celebrate Congenital Heart Defect Awareness Day.

My little girl is amazing me lately.  She is talking like crazy and eating like crazy too.  Since this last sinus infection, she has started eating more solid food than ever before.  She runs to the car after school and tells me what she had for snack...she hadn't eaten anything at school before.  Most people know that we have supplemented solid foods with a high calorie drink basically since she was born.  We have been trying to get most of her calories with solid food, but it has never been easy.  Now...I can't even explain the difference.  She also started Pepcid and I am wondering if that may be part of the solution.  I know we are definitely going to continue the Pepcid because I am afraid her eating will slow down otherwise.

Hope has a jam-packed day coming up on February 25th.  She has Cardiology and Nephrology...which means all day downtown.  I always fear these appointments because she looks and acts amazing to me, but I can't see her heart or kidneys.  I really hope to share a post or two before the 25th, but if life gets in the way, please say a prayer for us.

CHD Awareness Day

Today is a special day for so many reasons.  It is Valentine's Day and a day for love and romance.  My husband and I have celebrated Valentine's Day every year with a nice dinner and flowers or candy.  We still celebrate and always will celebrate Valentine's Day.  We have a few new traditions...like Build - a - Bear!  My mom takes Hope every year to build herself a bear and to donate to The Children's Heart Foundation.

This is the dog Hope built yesterday...isn't he cute?

Happy Valentine's Day and Happy Heart Day to everyone!

CHD Awareness Week Day 7

Today is a day of medical stuff.  Above is a picture of two hearts...one is a Normal Heart and the other represents Hope's Heart (HLHS).  Every time I see this picture I am reminded of how amazing the surgeons are that have repaired Hope's heart.  With so many things wrong with her little heart, these surgeons have performed miracles.

Many people may not know this, but Hope was also born with Multicystic Kidneys.  Her kidneys are both cystic material and neither functions at 100%.  It is uncertain as to when she will need a transplant, but the long term outlook is definite that she will eventually need a new one.  If the cysts just affected one kidney, she could live a very long time with just one working kidney, but that is not the case with Hope.

I know people may look at all her medical problems and see a little girl who may not have a great life because of all her issues, but she has done amazing.  She is the strongest little girl I know.  She has shown me miracle upon miracle.  I remember being asked when I was pregnant if I wanted to terminate...I know God had something planned for our little girl.  I appreciate life to the fullest and treasure every second of every day.

CHD Awareness Week Day 6

This is one of my favorite!

Today is day 6 of CHD Awareness Week and it is full of beautiful pictures of my little girl...enjoy!

My favorite picture of me and my little girl...this is when she was in NICU...before the Norwood.

Sporting her NG Tube when she left the hospital.

After the Norwood...old surgery pictures are on the blog, but not sharing in this post!

And this is why it is so hard to raise awareness...she  is amazing and you can't see her heart defect!

CHD Awareness Week Day 5

Day 5 of this special week will focus on special needs.  Erin over at Praying 4 Raygen nominated me for the Liebster Award-Special Needs Edition.  

So the first step when your nominated is to share 11 random facts about yourself so here I go:

1.  I am a lot older than my husband and I love it.
2.  I am a programmer and work from home...giving me plenty of time with my kids.
3.  I procrastinate a lot and I am working on that this year.
4.  We have peacocks, chickens, dogs, cats, fish, a turtle, and a bearded dragon for pets.
5.  I love watching teen movies...especially on ABC Family.
6.  I drink way too much diet soda...something I would love to give up.
7.  Country music is the only thing on my iPod.
8.  I have probably worn makeup 5 times in my whole life.
9.  I have had the same haircut since the 80s.  I am trying to grow out my bangs this year.
10. I love to read...anything and everything.  My Kindle is full of books...I need to find more time to read them.
11. I collect peacock decorations and ornaments.

Then Erin (who nominated me) asked me these 11 questions:

1.) How has having a special needs child changed your daily lifestyle?

Daily medicine, special food for weight gain, and spending time working on Hope's physical needs has definitely changed our daily lifestyle.  Hope doesn't take that much medicine, but it is something that has to be planned and accounted for every day.

2.) Have you ever had a doctor/nurse that you didn't trust to care for your child?

Yes, we had one nurse and I promptly asked that she not take care of Hope again.  It was hard because I didn't want to be seen as a problem parent, but I knew that Hope might suffer because of the lack of care.

3.) How has having a special needs child affected your friendships?

We have lost friends because of being home a lot more.  I have also developed some great new friendships with heart families and families of other special needs children.  

4.) How has having a special needs child changed your travel routine? (Vacations, trips to town, Grandma's house etc.)

Traveling is something we used to do quite a bit.  We don't do it much now, but that is mostly because we have 3 kids...not just one with special needs.  We have driven for hours and that is really hard because we have to get medicine and food available for Hope and we bring a lot of extras to hotels, but we still try to go somewhere every year...just not by plane.

5.) What is the one item your child can not leave the house without?

Her pink blankie.

6.) What is the one item you can not leave the house without?

The diaper bag with everything we need.

7.) How has blogging helped you?

I spent a lot more time blogging when Hope was young and it really helped me get my feelings out and to meet other families.  It also provided a way to document my feelings and everything we went through...now I use it more to document our lives every once in a while.  I need to get back to doing it more often.

8.) How has your child's brothers/sisters dealt with having a special needs sister/brother?

My boys have been incredible with Hope.  They protect her and help her as much as possible.  They aren't as aware of her heart problems, but they do know that she needs extra help.  

9.) Looking back what is the one thing you would tell yourself before your child was born?

Enjoy your pregnancy and accept all the help everyone is willing to provide.

10.) Did you "Google" your child's diagnosis early on in pregnancy?

Absolutely!

CHD Awareness Week Day 4

Today is day 4 and I want to focus on giving back.  I know there is not a lot I can do medically for my daughter.  She has a team of doctors, nurses, dietitians, therapists, and surgeons that handle her medical issues.  I thank God for each and every one of them every single day.  They have kept Hope healthy and have repaired her broken heart...it will never be fixed, but it works for her.

What I can do is try and support research, awareness, and other heart families.  It seems to be the one way I feel like I am able to help Hope. I can work with Mended Little Hearts to support other heart families.  I can help coordinate the Congenital Heart Walk to raise funds for The Children's Heart Foundation and the Adult Congenital Heart Association. It is the small way that I feel like I am helping Hope.  I hope everyone is able to get the support they need when they need it.  Congenital heart defects affect so many families and I hope the little I can give back helps at least one family.

CHD Awareness Week Day 3

Today is day 3 and a perfect day to talk about how CHDs have affected our family.  Our family has changed so much since Hope was born.  We have grown and learned to enjoy life...one day at a time.  We appreciate life more now than ever before.  We don't waste our energy on the small stuff and we try hard to avoid conflict and drama.  We have too much going on and living life to the fullest to worry about drama or spend time with it.

Hope is doing great and that is amazing.  She is in preschool and loves it.  She is getting bigger, although this infection has set her back a little bit.  Today she is back to eating solid food and boy is she eating.  First thing this morning she woke me up and asked for cheese.  I love it.  There is always a little voice in the back of my head telling me she has another surgery someday soon.  I am hoping to hold off until the summer of 2014.  She will be bigger and her sats are still sitting in the 80s right now.  It will also give her more time to grow her kidney and hopefully the Fontan will not affect it at all.  It is honestly my biggest worry about the Fontan.

CHD Facts of the Day:


• Overall, one in 10 children born with CHDs won’t
survive to adulthood.
• People born with more complex CHDs face a
higher risk of death before age 18.
• Adults with CHDs continue to face a high risk of
early death and disability.
• Fewer than 10% of adults with CHDs in the U.S.
who need care from specialty adult CHD centers
are receiving this recommended care.
• Thanks to advances in medicine, it is now believed
that the number of adults living with CHDs is at
least equal to, if not greater than, the number of
children living with CHDs.

CHD Awareness Week Day 2

Today is day 2 of CHD Awareness Week and we are spending the day kind of sick.  Hope has had a stomach bug for a little while and I decided to take her to the doctor today.  Well...it is not a stomach bug, it is a sinus infection.  It seems that it is draining to her stomach and sitting there and making her sick, so she throws up.  I am actually glad it is not a stomach bug, but she is on antibiotics and back on Pepcid.  She has not taken Pepcid since she was 6 months old.  I hope it settles her belly.  We did have a long discussion with her doctor about antibiotics.  Hope has been on them only once before.  The last one was a creamy white color and because it made Hope so sick last time, I explained to her doctor about her oral aversion.  Hope is now on an antibiotic that is pink and she only has to take it for 5 days...PERFECT!

CHD Awareness Week Fact of the Day:

• More than 50% of all children born with congenital heart defect will require at least one invasive surgery in their lifetime.
• There are more than 40 different types of congenital heart defects. Little is known about the cause of most of them. There is no known prevention or cure for any of them.
• In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.

CHD Awareness Week Day 1

Today begins a week that is very important to me.  It is a week where I try to spread as much awareness as possible about Congenital Heart Defects.  I try to do this all year, but during this week I go out of my way.  I tell strangers, friends, family, and anyone I see the significance of Congenital Heart Defects and how much they can affect an entire family.

Prior to Hope's diagnosis I had heard about CHDs.  My sister-in-law and her son were both born with CHDs.  They were fairly mild and fixed when they were young.  Now that I know more about CHDs, I know that they were not fixed...they were repaired.  When you have a structural change in your heart when you are born, it can be repaired, but there is no guarantee that it will not be a problem later in life.  Even seemingly simple CHDs may cause issues in the future...they may not, but there is always a chance because the heart was not structurally perfect.

I feel the need to share some facts on the first day of CHD Awareness Week:

• Congenital heart defects are America’s and every country’s #1 birth defect. Nearly one of every 100 babies is born with a CHD.
• Congenital heart defects are the #1 cause of birth defect related deaths.
• Congenital heart defects are the leading cause of all infant deaths in the United States.
• Each year approximately 40,000 babies are born in the United States with a congenital heart defect. Thousands of them will not reach their first birthday and thousands more die before they reach adulthood.
• Each year over 1,000,000 babies are born worldwide with a congenital heart defect. 100,000 of them will not live to see their first birthday and thousands more die before they reach adulthood.

City of Medina Proclamation

I am so happy that the community I live presented myself and several other families in this area a proclamation announcing the week of February 7-14 CHD Awareness Week.

We also got some great publicity in our local newspaper (Medina Post).  I didn't know about the newspaper coverage until a neighbor called and told me.  It was in a different Medina Post than the one we get at our house.

I know I have been missing from blogging for a while.  I plan to get back to this habit.  I am hoping to blog every day during CHD Awareness Week and posting some new pictures of the little ones.