Hope's Blog

Heart Month and 10.15

2012-02-01T20:57:00.000-05:00

It is the 1st day of Heart Month and I am so excited that CHDs may actually get some attention this month. I know we heart families are doing everything possible to make sure we raise awareness. I am planning to 'pin' Hope's story on Pinterest for Faces of CHD. I have never been on Pinterest, but I am excited that we are able to share our stories and our kids with as many people as possible.

Any heart families that have not 'pinned' please go HERE and follow the instructions from Stef's blog "When Life Hands You A Broken Heart".

A little weight update...Hope is up again!!! Not as much as last time, but still pretty good. She is up .15 grams which is right where she needs to be to keep us from another cardiology and dietitian appointment. For the non-kilo folks...that is 22 pounds 6.03 ounces. That is an increase of almost 6 ounces in two weeks. She is doing so good. Yeah...we don't much like having to drive to the Clinic and prefer to drive up the street to Medina Hospital and say 'hi' to the nice nurses and Dr. Preminger.

Another great fundraiser for CHDs is visiting Build A Bear during the month of February. While there, please be sure to make a donation to The Children's Heart Foundation. Click HERE for more details.

Finally...I will be changing my facebook picture as often as possible to show the different ways CHDs have affected Hope and our family. I know people don't like seeing pictures of Hope after her surgery, but I truly believe that is part of her life. It is something she has been through and will go through one more time.

I will try and post a little more often this month to keep up with the awareness!

1st Haircut

2012-01-24T17:38:00.001-05:00

I finally broke down and got my little girl a haircut. We had a girls day out with my mom, Destiny, Hope, and I. I took the boys to Cookie Cutters for their first haircuts and I was really upset that they are closed. I found a cool kids place called Snip-Its and off we went. It was nice and Hope did great...although Cookie Cutters was much cooler.

I was kind of shocked because Hope did not cry at all. She just sat there and let the nice lady cut her hair. I was very surprised, but also very happy.

On the way out, Hope got more pictures and a prize...a cute little bracelet.

The boys went with dad to get their haircut. Check out my little men. They are so cute.

A Perfect 10

2012-01-18T19:04:00.000-05:00

Yep...that's right...she hit 10 kilos today! Woohoo!!! She has done amazing with her eating since she got over her last bout with the stomach flu (or whatever she had for 8 very long days). She has actually been a totally different little girl since she got over this...running around, playing like crazy, laughing, talking, and just being a lot happier than she was even before she got sick. She is still only grazing through the day, but it is a little more than before she got sick and it makes me think she is really taking this weight thing seriously.

For my non-kilo friends...here is a summary:

Today Hope weighed 22 pounds .74 ounces. On January 4th (a couple days after her flu) she weighed 20 pounds 8.05 ounces. That means she has gained 1 pound 8.69 ounces...that is huge. I don't think she has ever gained that much in two weeks (probably not in a month). I know some of it is from her packing on weight after the bug, but really...it is amazing!

I hope everyone is having a wonderful New Year! 2012 started off with a little bug, but it is definitely gearing up to be a great year for our family.

9.30 - UGHHH

2012-01-04T10:38:00.000-05:00

That pretty much sums Hope's weigh in this morning. I knew it was not going to be good. She had a stomach virus for 8 days...yeah, the whole puking and pooping kind of virus. The kind that no heart mom wants their little one to catch. It was awful and I would have blogged about it, but it was just that awful. So awful that I had to get a brand spanking new washing machine. It was the floor model because they didn't have any that we liked in stock and we needed one THAT day. The dryer will be here today, but no biggie...our old dryer works just fine. I was going through at least 2 loads a day...and that was just the puke and poop stuff...not even counting the regular 2-4 loads I normally do a day.

I am now home waiting for a call from Hope's cardiologist. I know it is coming. I am guessing we will be making a trip downtown in the next week or so. They get really concerned when Hope loses any weight...even if she has been sick.

I will break down the ughhh for everyone. Last weigh in December 14th - 9.55 kilos or 21 pounds .866 ounces. Today (three weeks later) - 9.30 kilos or 20 pounds 8.05 ounces. Total loss .25 kilos or 8.82 ounces (.551 pounds). Not good at all. We are trying to get her back to eating the way she was before the stomach bug, but that is going to take some time too. She is pigging out on potato chips and I am thankful for that...it is something new for her and she loves it.

Oh well...that is why there was no Happy New Year post. I was busy cleaning up after a sweet little girl who was feeling really icky. So...I hope everyone has a Happy and HEALTHY New Year!!!

Ben Breedlove

2011-12-30T19:23:00.000-05:00

I know many people that read my blog posts have seen the videos that Ben made and posted just a week before he died. Ben had a heart defect...not the same as Hope, but just as severe (and at times much more severe). He posted cards about his life and how he cheated death. He posted cards about the limits his heart defect had on his life. He seemed like he lived a great life and from his video, he seemed happy. It warmed my heart watching his videos. It made me thankful for the many people that share their heart stories and lives...there is so much inspiration and hope for the future. I did cry, but they were tears of appreciation and also knowing that his life was way too short. I imagine the dreams that went unfulfilled, but I also know that because of his heart defect, he lived his life to the fullest. I am proud that he shared his story and grateful for his bravery and his life. He is my hero!

A Wonderful Christmas

2011-12-26T22:15:00.000-05:00

We all had a great Christmas this year. It was filled with family, friends, fun, and food...all the things I love! I don't have a lot to say, other than I hope everyone had a Merry Christmas and has a Happy New Year. Onto the pictures.

First dress of the day...we had family time at my sister's and then headed to Jerry's parents in the evening.

My cute, funny little man...Paul

Jerry...the laid back little man.

Destiny looking beautiful as always.

My little dress-up queen!

Toddler Years by Stephanie Husted

2011-12-18T10:50:00.000-05:00

9.55 - Slow and Steady

2011-12-14T19:12:00.000-05:00

For the non-kilo people that is 21 pounds .866 ounces. In two weeks she has gained over 5 ounces...slowing down a little, but still a gain. She is over 21 pounds and I am thrilled that she is now OVER 20 pounds. It has taken so long to get here and even though it is hard, we know that she is gaining and it makes all the work that much better.

In a bit of related news, we found out that Dr. Mavroudis (Hope's surgeon) is no longer working at the Cleveland Clinic Children's Hospital. He has always been our hero. He saved Hope's life and held her heart in his hands. He is an amazing man and it was always my thought that he would be the one to do all of her surgeries. It never crossed my mind that he might not be there for her Fontan. It is very scary for me to think about someone else holding her heart in their hands. I know we still have many months (hopefully over a year) to worry about her Fontan, but I can't help but worry (it is in my nature).

Enough of that...everything else around here is going great. I have hardly started Christmas shopping, but I am hoping to get in a good day of shopping this weekend.

Happy Birthday to my Hubby

2011-12-08T13:22:00.000-05:00

Jerry's 35th Birthday is today! He is the best husband ever. I know I don't tell him that enough, but he really is a great husband and dad. He has been my rock for the past 6 years...especially the last three when we were expecting Hope and since she was born. We have been through a lot as a couple and have grown stronger and closer through it all. We have had bumps...just like most other couples, but we go over or around them when they pop up in the road. I have seen my husband laugh louder and cry harder than any other person.

Happy Birthday Sweetheart!

Pepsi Christmas Party

2011-12-04T09:47:00.000-05:00

My husband works for an amazing company and every year they have a wonderful Breakfast with Santa for the families of the employees. They have a pancake breakfast, tours of the plant, family pictures, visits with Santa, raffles for great prizes, and presents for the whole family. We go every year they have it and have a great time. So many people take it for granted when their companies do things for their employees and it really is a shame. I think it is great that Pepsi plans this event every year and I know we appreciate going and taking our family.

9.40 - Another Gain

2011-11-30T18:42:00.000-05:00

I am happy to report that Hope has gained more weight. I plan to document it every two weeks because then I remember this time and Hope will see how great she did when she gets old. For anyone that does not do kilograms (haha...I know my heart friends all know about kilograms), Hope weighs 20 pounds 11.57 ounces. Two weeks ago she weighed 9.15 kilos or 20 pounds 2.75 ounces. That is a great weight gain!

A lot of the kids playing with legos on Thanksgiving. There are a whole lot more kids in the family.

We had a great Thanksgiving this year and enjoyed spending time with family. We made dinner at our house that included a Tur-Duc-Hen...which is a de-boned chicken stuffed in a de-boned duck stuffed in a de-boned turkey. It was our first year trying it and it was really good. I got it from The Cajun Grocer and they do a great job of creating and stuffing it. We also had a turkey and a ham...for our less daring relatives. Everyone brought great food for sharing and we were all stuffed at the end of the night.

My Grandma (87) and Hope.

Swimming at the hotel (a rare picture of myself)

Jerry had to work on Friday and when he got off work we all packed into the car for a long drive to Kentucky to see my dad and his family. My grandparents are 92 and 87 and they have never met Hope. I wanted them to meet her, but I sure did not enjoy the drive. Over 8 hours each way with 4 kids in the car is NOT fun. I really tried, but about the millionth time I was asked if we were there yet...ughhh...I had reached my limit. Oh well...it's not like we do it all the time. It was the first real trip we have made since Hope was born, so I guess I can go another 2 years before we make another long trip.

Funny Faces

2011-11-22T07:23:00.000-05:00

I just had to share the picture-taking fun we had the other day. My kids are the funniest and I love them so much. They make me laugh so much and I can't believe how much entertainment we can have with just a camera.

We are all looking forward to Thanksgiving and I plan to spend some time working on a blog about everything I have to be thankful for. We are traveling this weekend (after a huge feast on Thursday), so I may not be able to write until next week.

I hope everyone has a blessed Thanksgiving and remembers what the holiday is for...remembering to be thankful for everything you have in life.

9.15 kg = OVER 20 POUNDS!!!

2011-11-17T08:58:00.000-05:00

Yeah...that is the best word to describe how Hope's weigh in went this morning. She did amazing...no throwing up this time and I know everyone was thrilled about that! Yes, my little sweetie loves to throw up on any and all medical personnel...no exceptions.

Later in the day we had a Nephrology appointment. This is to check on her kidneys...which seem to be doing what they are supposed to do. Her bloodwork has not changed and that is great news. We only have to do an ultrasound once a year now and that is wonderful news. We still have to come back every 3 months to visit with the nurses and spend the day downtown, but I am happy with that plan.

In other news...my oldest son, Jerry, turned 6 on 11/11/11. He is getting so big and is such a great kid. We went to his parent teacher conference last night and his teacher just loves him. He is very quiet, but also very polite and really nice. He is learning so much this year and is starting to read...amazing.

Two Years Ago

2011-10-29T12:33:00.000-04:00

Going home two years ago!

Today!!!

Hope came home for the first time! I remember the day so well. We got home really late at night because there was just so much to do before we were allowed to leave. The home health company was at the house when we got home and made sure the stuff was set up for her NG feedings. The boys were so excited to see Hope and loved that we were finally all home. We had everything ready for her...she slept in the same bassinet the boys did when they were babies. She had a brand new swing from her grandparents and we knew she would be much happier...and we were right. She was like a totally different baby at home. She slept through the night and it amazed the whole house. I, of course, slept very little. I kept getting up to check and make sure she was doing fine. I still do that...even with the boys I did it for a long time. I think it is a habit and I still check on the boys before I go to sleep.

There are so many wonderful thoughts and that day and every day since...we are a family! It didn't seem like it when Hope was in the hospital. The boys weren't allowed to visit much because it was flu season. I spent all day and most evenings at the hospital. I would come home to sleep and work out the plan for the day to see who would watch the boys while I was at the hospital. Jerry went back to work because I had maternity leave and we didn't need to worry about my salary, but we needed him to work. It was hard, but it was so worth every second. My mom took off work and was able to keep the boys most of the time. Everyone in our families stepped up to help out...they are amazing and if they are reading this...THANK YOU AGAIN!!!

Hope has been home for every single holiday. She came home right before Halloween and this will be the third Halloween that she has spent trick-or-treating. Of course, the first one we didn't really do anything with her, but we did take the boys out because we didn't want them to miss out. This year we will be heading out today...bundled up really warm because it is really cold here. I know everyone will have a great time and hopefully not too much candy.

Weight Issues...Still

2011-10-19T10:55:00.000-04:00

OK...so we thought we rounded this corner and I still think we have, but I guess we didn't round it fast enough. The crappy August 1st appointment where Hope was 17pounds 5 ounces is where I prefer to start. She was then weighed in Medina on the 17th and it showed a loss (of course I didn't document the weight...pooh). Anyway, today she weighed in at 19 pounds 4 ounces and that is after a big poop this morning and after she decided to throw up breakfast all over the nice guy that was weighing her in. I think she is so used to seeing Dr. Preminger and the girl nurses that she got nervous around the male nurse (or maybe she is getting a little stomach virus...really hoping that is not the case). I think that is AWESOME!!! I am so proud of my little girl. She is eating like a champ (drinking a whole lot more than actually eating...which is OK).

Now for the disappointment...we have to head downtown for a weight check and echo on Friday. They (her regular cardiologist and dietitian) did not feel her weight gain was going as well as they hoped (I don't really know what they expected and I will be damn sure to find out on Friday). I know it slowed down, but once we realized it was not just a fluke, we increased her intake. Of course, I think it was too late for them and instead of giving me and Hope a chance, they jumped the gun (this is my opinion, but I will be sharing it with them on Friday).

I know Hope has problems gaining weight and she really needs to get some additional weight on for the winter (as a reserve in case she catches something). I also know she needs to pack on the pounds (literally) to be in the best shape possible for the Glenn. But, as I am looking at it...she has gained almost 2 pounds in 2 months...that is HUGE for her. She only gained 1 pound in almost a year...ughhh!!! I think I am afraid of what they will find on Friday, but I am hopeful it will be a good appointment with little attitude from my little peanut. She is notorious for being difficult and I would like to see that change...someday.

For now, I am off to see if she wants something else to eat. We keep food all over the house and let her graze through the day...I think it is working and I plan to loudly disagree with her cardiologist on Friday...wish me luck and patience!

Oh my...that's why

2011-09-30T01:59:00.002-04:00

Two years ago today...this was my daughter right after her Norwood. We could see her little heart beating under the Gortex bandage. I so wish no parent ever had to see their baby look like this.

My little girl today. I am so happy we didn't listen to the 'experts' two years ago!

I have been overly emotional this week. It happens sometimes and usually I can figure out why. This week...no luck. Every little thing has triggered an unusually easy crying spell for me. Now...I do cry easily a lot of the time, but this week really has been different...and more often. Of course, I finally figured it out. The past few weeks were the worst of my entire life. Two years ago today Hope had her Norwood...that was actually one of the best days because someone (our hero...Dr. Mavroudis) took the chance on Hope and did her surgery. A week before we were told that Hope was not a candidate for the Norwood and we should take her home to die. Even as I am writing this I can feel everything from that day...the pain, anguish, hurt, and just plain disbelief. It was a shock and totally unexpected. She was scheduled for surgery and then they canceled it. We didn't know what to do...like so many parents. We trusted our doctors. We trusted everyone. We thought they knew best. We are MUCH smarter now. We trust...just not blindly. We have no problem getting second, third, one hundred opinions. We know that our daughter's life is worth everything. She is a fighter and so are we. I will continue to try and find anyone that is given the same advice...take your baby home to die...and have them get other opinions. I don't think that is something ANY doctor or hospital should ever tell any parent. There should be rules against this...they should inform parents about options, other hospitals, other doctors...rather than telling them there is no hope. Not once were we told to get to another hospital...that another surgeon might be willing to help. Ughhh...I hate writing about this...it makes me really mad nowadays. It used to make me sad, but I know of two other babies that were at the same hospital that the parents were told the exact same information. Both families transferred their babies to other hospitals. One baby did not make it, but got to spend his last days at home with his family and the parents feel like at least they know for sure that their baby would not make it...because they got another opinion. They won't have to think about the 'what-ifs' that I still think about way too often. The other family has a beautiful son and he is now at home...AMAZING! Sadly, I think about all the other families that I don't know that may get the same news. I'm sure the doctors there would never give them my phone number. I find them accidentally. And sadly, I know I can't find all of them. I worry that some parent will have the 'what-if' thoughts after they have taken their baby home to die.

Sorry for the depressing post. I told you ahead of time that I was overly emotional. Two years ago today, my daughter was saved by the most brilliant surgeon ever...Dr. Mavroudis is and always will be our HERO! He may not be from some big, fancy, number 1 rated hospital...but he is the BEST!!!

Our HERO!

Heart Walk and Birthday Party

2011-09-20T22:09:00.000-04:00

This weekend was just plain crazy. I was the co-chair for the Northern Ohio Congenital Heart Walk...benefiting The Children's Heart Foundation and the Adult Congenital Heart Association. This year was the 1st year for the Walk...and definitely NOT the last year. It was an amazing day with many wonderful families. I cannot thank everyone that came out and walked enough...it was the best day. We had over 20 teams and around 300 people all walking for congenital heart defect awareness. Every single person there represented the many people that are affected by someone with a congenital heart defect. Our goal for the Walk was $10,000...we raised almost $40,000...totally blowing our goal out of the water. This was all thanks to the many families and friends that raised money, awareness, and support.

Here are some pictures of our amazing day:

Our MANY walkers raising awareness for CHDs

Jerry and Hope with Dora

The Heart Garden...for our survivors and the angels watching over them.

Sunday was another big day at our house. We celebrated Hope's 2nd Birthday. It was an amazing day with family and friends and a whole lot of fun. Food was all ordered because I did not have the time or energy to make anything, but it was good food. Hope got her first tricycle...of course she doesn't reach the pedals. She also got a lot of clothes which is always good around here. She is sure to wear them because it takes her a long time to grow out of everything. This means she wears out all of her clothes before she moves into the next size. She wears anything and everything we get from family and friends. We never have clothes that were not worn...so different than the boys.

Here are some pictures from the big day:

Her beautiful hair was styled by her Aunt Danielle...I really need to learn how to do her hair...she is so darn cute when it is done!

She will be able to ride it someday...hopefully soon!

My little princess!

Happy 2nd Birthday Princess

2011-09-14T06:22:00.002-04:00

WOW! That word is the one description for today. Hope is 2 years old today. There were so many people that never thought this day would happen. There are so many people that have seen so many miracle in 2 years. This is a day for a huge celebration...although we will have a little one today, another one on Sunday with family and friends. Today is a day for reflection, but not too much. I don't want to spend any time at all thinking about Hope's birth or the almost two weeks following. There is time for that reflection...today is for thinking of all the awesomeness that is Hope. She is amazing...she is beautiful...she is full of life! She is also a typical 2 year old...running and playing...talking like crazy (and only we can understand it)...and throwing tantrums like no one's business. She is my tantrum thrower like you wouldn't believe. She can work herself up to the point she throws up...it is gross and so hard to watch. She stomps her feet (which is actually quite funny), but watch out for the tears...they lead up to the throwing up.

Now to share an amazing poem from the magnificent Stephanie Husted (I changed it because she has a son, but she expresses my feelings so much more eloquently than I ever could):

Happy 2^nd Birthday

Happy birthday Hope

(I can't belive your two!)
Now climb right into mama's lap

I have advice for you.

I think that you will always know

Your special in some way

Someone may see you bear a scar

As your outside at play.

Don't ever be embarrased by

The special heart you claim

Remember you are loved so much

(God calls you by your name)

Don't let this life say "no you can't"

(There's many things to do)
I know you can do anything

That you set your mind to.

Stop...enjoy the little things

(the best things remain free)
Seek your dreams with diligence

And love your family.

Make time to admire God's wonders

And always remember to smile

Laugh sometimes at silly things

Learn how to face a trial.

Believe there is a purpose

For all things that we face

Start each day with hope anew

And learn to fall on grace.

I'm getting a little ahead of myself

(as mommy's tend to do)
I'll strive to teach you all these things

(for now your only two!)

~Stephanie Husted

Newspaper Article and Congenital Heart Walk

2011-08-30T09:05:00.000-04:00

Hope made it to the newspaper again. Please read the article here. It is all for our Inaugural Congenital Heart Walk that will be happening on September 17th at Wade Oval in University Circle.

All Ohio friends and family are welcome to join us at the Walk. Following is the website for Hope's Heart Warriors.

Hope's Heart Warriors

If you are not able to join us, please donate. All proceeds go to The Children's Heart Foundation and the Adult Congenital Heart Association. Your support would be greatly appreciated.

Every Heart Has a Story - Take Two

2011-08-15T08:35:00.000-04:00

Here is my post from the first time Stef invited me to join the blog party. I am updating it a little because I think it has been a year. This is so much fun because I get to meet so many new families and hear their story...or read a story all over again.

My husband and I found out Hope would be born with HLHS (hypoplastic left heart syndrome) on May 13, 2009. It is a day that I will never forget and the scariest day of our lives. We know when we went for the fetal echo that Hope had a heart problem, but we really figured it was something 'minor' (not that there are really any minor heart defects). My in-laws have some CHDs...holes and stuff that were fixed. Never did we think or even know a baby could be born with 1/2 a heart.

We had already named Hope (after Hope Brady from Days of our Lives), but her name truly fit when we found out. We also found out at that appointment that they were not able to find one of her kidneys. We spent the next week couple of weeks having appointments and meeting with the surgeon and many other people that would help us through our pregnancy. It was difficult because we had to make a decision whether to terminate the pregnancy or carry Hope to term and go through with 3 surgeries that may (or may not) save her life. We did a lot of soul-searching, talking, crying, screaming, laughing, and even more crying and decided to give Hope a chance at life.

My pregnancy was pretty normal and I have always loved being pregnant. I would have a ton of appointments and finally got to the point where I made the choice to only go once a month. My OB wanted to see me more often and have more echos and more ultrasounds, but I found that I was depressed after them, so I decided to try and make it as normal as possible. That really helped my sanity.

On September 9th everything changed. I went in for a regular appointment and an ultrasound to check my fluid. Low and behold...my fluid was low. I never had that before and I was scared and so were the doctors. I was admitted for observation that day and would remain in the hospital until Hope was born. It was the hardest part of my pregnancy and scared my whole family. It was also very depressing because I spent the whole day thinking about Hope and worrying about something happening to her. I can't explain all the feelings I went through from that date until she was born, but it was hard. I was checked every day to see how much amniotic fluid I had and every day it was fine. On the morning of the 14th, I told the OB on duty that if it was still at a good level I wanted to go home. Of course, it had dropped to an unacceptable level and they decided to induce me. At 3pm, the pitocin started and so did the waiting. I finally asked for them to break my water at 6pm because the pitocin wasn't doing much at all. Our families were all there for most of my labor and it was nice to spend time with everyone and not have to wait through the hours by myself. Of course Jerry was at work and I called him as soon as I found out, but I also knew it would take a couple hours for him to get there.

Hope Jane Wodzisz was born on September 14th at 10:01 pm. She weight 5 pounds 12 ounces and was 18 1/2 inches long. Her APGAR was 8 and 9. She was screaming and kicking and looked so good. Once she was born, we had them put in her prostin drip in her umbilical cord. We dressed her up in her Christening gown and the pastor came and Christened her. Our whole families were there for us and for our daughter. It was beautiful! We also had Now I Lay Me Down to Sleep there to photograph everything because we were not sure if she would be born kicking or screaming or not.

Hope was transferred by ambulance to the Children's Hospital at 12:30 that night. Jerry and I followed in our truck (I was not officially released, but they let me go for a few hours). Hope was in NICU and looked so cute and so small. They started her on IVs and made her comfortable. She took to the binkie almost immediately and looking back...it was the greatest thing they could have done for her. We got back to the General Hospital around 3am and slept for a few hours. I forgot to get discharged that morning, so they kept calling over to the Children's Hospital until I went back at 6pm to beg for a discharge. NICU sent us home at midnight to get some sleep. It was the hardest thing I have ever done...leave my baby at the hospital and go home.

Fast forward to September 21st. Hope was scheduled for her Norwood on the 22nd and the morning of the 21st we met with the other surgeon (ours was at a seminar) as well as nephrology, genetics, and a whole bunch of other people. It was and will remain one of the worst days of my life. We were told that because of Hope's kidney problem (I forgot to add...they did find her left kidney...it is small and in a different spot, but God answered a lot of prayers) and the chromosome issue she shares with Jerry (that's another story altogether) they did not feel comfortable doing the surgery. They told us that if she made it through the surgery, she would probably go into kidney failure. I don't think many people could imagine how we felt that day. They basically told us to take our healthy looking daughter who did not need to be intubated yet home to die. Jerry and I broke down and left the hospital. We drove home...probably not a good idea...and set about figuring out what to do. We knew we wanted to give Hope a chance. I got on the phone and Internet and tried to find someone that would help us. I found our miracle. Dr. Mavroudis is from Cleveland Clinic Children's Hospital and it was fate. His wife's name is Martha (my mom's name is Martha). His daughter's name is Paula (of course, my name is Paula). It was destined for us to go to there!

Jerry and I went back to the hospital and put in the request to get Hope's stuff together and the Clinic sent an ambulance for our little girl. It was too windy for air transport, so Hope went by land. It was a long drive, but we are so thankful everything happened so quickly and Hope did so well on the ride. We made it to the Clinic around 11pm and Hope was in PICU. They sent us home that night and told us to get some sleep and come back in the morning to meet with the whole team of doctors.

We met with everyone the next day and even got to meet Dr. Mavroudis. Hope's surgery was scheduled for September 30th and Dr. Mavroudis told us that even though she had more medical issues than some hypoplasts, as long as we knew the risks, he was happy to do the surgery. What a lovely feeling...there was no doubt!

On September 29th, Hope was intubated. They wanted her to get used to the breathing tube before her surgery. The following morning Jerry and I cried as we handed Hope over to Dr. Mavroudis. Our whole family was with us waiting for hourly updates. It was hard, but we really felt she would do fine. We spent 10 hours waiting to see Hope. The updates were pretty good, but we were worried the whole time. So many feelings and thoughts went through our heads and our hearts were heavy with worry. At 6pm, we finally got to see Hope. It was hard...harder than I ever imagined. She was so swollen and her heart was beating under a piece of tape. I was able to see her tiny heart beating...the scariest thing I have ever seen.

The next month was a flurry of activity and I could go on for a long time, but I won't. Hope was released on October 28th....6 weeks after she was born. She was released on NG feeds...meaning we had to learn to feed her through a tube (after she had her bottle) and how to change the tube. It was nerve-racking and hard for me to imagine. Jerry finally talked me into learning how to do it and then we were able to get released. What a feeling...HOME!

The next few months were a whirlwind of activity and appointments. It was such a wonderful time for our whole family. The boys loved having Hope and mommy home all the time. We didn't go out much and it was hard, but we didn't want Hope to get sick. We even pulled Jerry from preschool to make sure he didn't bring anything home either. We spent every holiday home together as a family. It was a dream come true. Halloween, Thanksgiving, Christmas...all at home with our beautiful children.

February 25, 2010 Hope went in for her pre-Glenn catheterization. It was her first cath and it was just as hard for us to go through as her surgery. Handing your child over to anyone that is going to intubate them and do anything is amazingly difficult. It does not get any easier...ever. Hope had to spend 2 nights at the hospital after her cath because her sats just wouldn't go up. It was hard and it scared us so much because she was doing so well before it.

March 8th Hope went in for her Glenn. Another day that will remain in my memory forever. We knew our little girl, her personality, her temper, we had her home for so many months. Handing her over for the Norwood was hard...the Glenn was harder. I don't know why, but it was. I broke down and really didn't want to hand her over. She was so happy when they came to get her that morning. She was laughing and smiling and looked like she trusted us so much. It was heartbreaking.

Hope did great. They did have to put her back on ECMO a few times because they made her LPA bigger. It was hard to sit in the waiting room and hear them tell us that they took her off and then put her back on. Dr. Mavroudis came to see us after the surgery and told us that there were a few minutes in surgery that he was worried...which made me worry too. She did great though. She recovered with just a little minor setback. She was home in 6 days. Imagine...home 6 days after open heart surgery. UNBELIEVABLE!

May 13th Hope had a catheterization to balloon her pulmonary artery. When they made it bigger in surgery it grew some scar tissue. This happens a lot, but I prayed it would not happen to Hope.

It is now the 15th of August, 2011 and Hope will turn 2 in a couple of weeks. She is on a quarter an aspirin a day, Enalpril, and Citric Acid (for her kidneys). She hardly eats and we are struggling to get her to gain weight. We have been struggling for a while and she has not gained enough weight this year and it is making her doctors very nervous. She is walking, talking, and basically doing everything an almost 2 year old should be doing. She is still in speech therapy and will probably remain in it for a while as she won't speak when the therapist is here. We are so proud and this journey has brought us closer as a family, to God, and to many new heart families!

Fair Time

2011-08-14T22:36:00.000-04:00

I wanted to share these great pictures of our day and weekend at the Cuyahoga County Fair. The kids all had an amazing time and Hope got to hop on some rides.

Having a blast driving in circles!

Getting ready to fly high in their helicopter.

More plane rides.

At the butterfly exhibit with cousin, Amanda.

Strolling around with big sister, Destiny

Riding the motorcycle with her big brother, Jerry. This one scared me the most...she seemed so small on the motorcycle.

We had a great time and love the county fair. Great food, rides, animals, friends, family, and a great time for everyone.

Now, we wait for Wednesday. If you have some extra prayers, good vibes, ideas, or thoughts about getting Hope to gain some weight (preferably more than 100 grams), please share. I really want this weigh in to be good and a happy occasion for both of us!

Weight....UGH

2011-08-11T21:58:00.000-04:00

Well...I was hopeful when we went on Wednesday that her weight would be up. Really hopeful. I weighed her on two different scales and both showed she was over 18 pounds. Yep...you guessed it...she actually showed a weight loss on their scale. It is a different scale, so I am blaming it on the scale. Something I have come to hate for many years for many different reasons. Now I just get to add another reason to the list. We started getting in more calories the day after the appointment. We realized 1200 was too much after having only 500-700 prior to that day. She threw up a couple of times and I know it was because it was too much. We are now trying to make sure she gets between 800-1000 every single day. What does this mean? A whole lot of liquid because it packs a whole lot more calories than most food. I create an 8 ounce concoction every morning that contains 800 calories. I make sure she drinks at least an ounce as often as possible during the day. She also drinks a high calorie juice every day which packs 250 calories. So far she has done pretty good with the concoction, but still has not finished one whole one in a day...but I keep trying. Today she got in 6 ounces, so that was pretty good. I give her food during the day, but she doesn't eat that much and I am realizing how few calories she was probably getting before...500 may have been the normal. Pretty scary when you really think about how few calories she was getting. Anyway...we head back to the same scale at the same time next Wednesday. I am hopeful it will be a better experience. It has to be or I don't know what will happen...I don't even want to think about what will happen.

Just call it a day of weight/wait

2011-08-01T23:15:00.003-04:00

Renal ultrasound...I really wish they would get these types of TVs in Cardiology!

She does great with the renal ultrasound!

The best way to describe today was busy. Busier than I really expected the day to be. We did get all appointments done and over with and handed out the packages in the Cardiac ICU. I will write this as an update from each appointment.

First was the renal ultrasound. Not much change since the last one...this is good news. Her right kidney grew a little (really good news). Her left one did not. She has bilateral cystic kidney disease...meaning both of her kidneys have cysts and do not function at 100%.

Next was nephrology...late as always. I know it is probably hard to make an appointment at the scheduled time, but just once I would like to have one at the scheduled time. Anyway, we weren't there for very long because everything stayed the same. Dr. Kwon wanted blood work, so that would be done in cardiology...we don't let anyone but John (he can stick anyone, anytime...and he is the BEST phlebotomist EVER).

Lots of heart bags for the parents in the Cardiac ICU.

After that appointment we went to the truck and got the bags to hand out in the cardiac ICU to the parents. I included a little of everything...food, water, gifts, hand sanitizer, chap stick...just a little of everything you need when you are praying for your little one in ICU. It was great seeing the doctors and nurses that took care of Hope...they still remember her which warmed my heart.

Off to lunch...nothing exciting.

Cardiology the rest of the afternoon. And I mean...the rest of the afternoon. We managed to get home at 6pm...UGHHHH!!! Height...yeah, she is getting taller (that I knew), Sats...86, which is still great. Blood Pressure....98/46, they tell me this is good. Finally...WEIGHT...17 pounds 5 ounces...OUCHHHHH. I was so hoping for a better number. Praying, feeding, carrying her around...anything to get a few pounds on her before this appointment.

So...what does that mean. We got to meet with our favorite dietitian ever...Christina. She is wonderful and caring and loves Hope. She stressed that Hope needs about 1200 calories per day. WOW...that is a lot for my little peanut. If she gets 500-700 on a typical day I would be surprised. This is going to be so hard for us because she likes all the healthy foods...especially watermelon which has about zero calories. We have tried everything. We finally found these juices from Nestle which she likes. I am going to try really hard to get her to drink 2 a day. She usually only drinks ones, so another challenge. That will be over 500 calories just in juice. We also add Benecalorie to everything. 1.5 ounces packs 330 calories, but it is hard to use the whole thing, so she only goes through one of those every 2-3 days. This is going to change. I need to get 1-2 of those in her a day. With the typical food she eats, that should get us around 800-1200 calories a day.

I must say that this is the hardest thing I have ever gone through in my life. I never in a million years would think I would have a child that could not gain weight. I have struggled with weight all my life. It is so much easier to not have junk food in the house and lose weight than it is to try and get a toddler that does not want to eat to actually eat high calorie food.

So...here's the plan. We feed her like crazy. She has to go to the cardiology department at Medina Hospital on the 10th for her weigh in. Then...feed like crazy, limit activity, get her to sleep as much as possible, and weigh in on the 17th. If she gains weight all is good and we know that it is just a calorie issue and we have to make sure she gets in enough calories to gain weight. If she doesn't gain weight we have to go back downtown and have another discussion with Dr. Prieto. She is suggesting that if she is not gaining at that time that we put her in the hospital for 3 days and determine if it really is a calorie issue or if there is something else happening. It would also mean another g-tube discussion. We surprisingly did not talk much about a g-tube with this appointment. My feeling about the g-tube is that if Dr. Prieto has a problem with getting her ears pierced because it is elective, I feel the same about the g-tube.

Overall...I think the appointments went a little better than I expected. I knew we would have hard discussions on her weight. I am glad Jerry came with me because I really needed to have him hear the stress they have about her gaining weight. He realizes the importance and I am hoping it will get him to really enforce the issue a lot more. I don't want Hope in the hospital for weight issues. The next time I want her in the hospital is when she has her Fontan.

And now that discussion...Dr. Prieto and the cardiologists at the Clinic believe the best time to have the Fontan is between 3-5. They know that many places are performing them at 18-24 months, but they feel like there is not enough data to prove whether or not that is a good idea. It has not been happening that long (maybe 2-5 years at some places) and there is just not enough data to support the theory that earlier is better. That gives me some breathing room to get Hope to the biggest weight possible. Low weight is a major risk factor for the Fontan. Bigger kids do much better than ones that are little. Dr. Prieto is going to send me research papers and their own data showing this...because I really need to see it in writing.

View of Cleveland from the parking garage...on our way home (finally)!

So, that was our day. Very long, very draining. I was happy, sad, scared, and relieved. I went through the whole roller coaster of emotions and now it is over. Back to real life and spending as much time as possible loving on my kids.

Fears

2011-07-31T21:58:00.000-04:00

Hope has appointments like crazy on Monday, August 1st - TOMORROW!

We start the day at 9:30 with a renal ultrasound. This will give us pictures of her cystic kidneys. I don't look forward to that, but Hope does pretty good with the ultrasound itself. I hate looking at her kidneys and knowing that they are just more cystic and not really growing. I really need to spend more time doing some research on this, but I just don't feel up to it. What I have read is not good and I hate to read any more about it.

Next up at 11:00 we meet with the nephrologist. He will have one of his nurses attempt to draw some blood. This will NOT go well at all because they suck at blood draws on kids with hard sticks. I am thinking if we have time between the ultrasound and the office visit I may head up to cardiology and have John (the best stick in town) take some blood. The appointment with Dr. Kwan, the nephrologist, will probably be crappy. I don't like or understand nephrology and the appointment usually ends with me crying because I know Hope will eventually need a transplant and I always worry this will be the appointment where we find out she is entering kidney failure. My heart breaks even typing this because I hate this reality. I hate that she has to have another life-threatening problem. Isn't the heart enough?

We will have a little lunch and then visit the PICU to hand out some bags of stuff to the parents that are there with their baby. I have these cute heart bags and I have filled them with all sorts of stuff. I am excited that we will have the time to make this delivery. I am looking forward to seeing the nurses and not actually having Hope a patient.

At 1:30 we have the echo and EKG...which will be rough for Hope and I. She hates these more than I can even describe. People in the waiting room can hear her screaming. It breaks my heart. I keep thinking that maybe, just maybe she will learn to be OK with the appointments, but we only go every 6 months, so it is really hard.

At 2:30 we meet with Hope's cardiologist. I pray it will be a great appointment. Her last one was really good...other than the weight gain issue...and I am hoping for the same. I know we are going to discuss a g-tube and that is why Jerry is coming with us. He is totally against it and I want him to hear what the doctor's are saying. I want him to hear everything. I am on the fence with the g-tube. I would prefer not putting Hope through another surgery...especially one that is kind of elective. She is eating...just not a lot. Definitely not enough for her to gain much weight. I just pray it will be a better day than I am expecting.

I am hoping you all can say a prayer for us tomorrow. We would appreciate all the good vibes during our appointments.

My Puppy Post - with pictures

2011-07-29T12:20:00.000-04:00

I wanted to do a post on just the puppies. They are all so cute and they are all 6 weeks old. They started eating puppy food this week and playing like crazy. They are running all over the house. I feed them and let them play outside because I don't want them messing up my house too much. I have never mopped my floors this much...I am sure they needed it though.

They will be getting their first shot and de-wormed this weekend. A local vet is taking two of the girls and has graciously provided the shots for us. He also checked them all out and they are all in great health. His wife is Hope's physical therapist...such a small world.

Dad and Mom

Gizmo - he has the cutest white line of fur in the middle of his head.

The boys call this one Little Guy. He is the male 'runt' and has the biggest cutest ears.

Humongo...because she is the biggest girl. She has a precious face too.

This is Bailey and she is already taken. She is super cute and super fun to play with. She loves to run and play.

Prince...it just fits him.

Jerry playing with the pups. They love to play and are great with the kids.

22 Months...SO Much Going On!

2011-07-14T20:50:00.000-04:00

My princess peanut is 22 months today. She is amazing! I have been reflecting lately...like I do so much of the time. I often wonder if I will always spend so much time reflecting on the past. I have found that once the Fontan is done, many heart families don't blog as often. I wonder if that will be me. Will I be able to stop sharing all the little milestones? Will I feel I can catch my breath and not worry all the time? I am not sure when Hope will have her Fontan. She is still really little, so I am guessing it will be next summer...or maybe the summer after. I pray all the time that her heart doesn't make her actually 'need' the Fontan...that it can happen when she is doing good and not have it be an emergency. I pray all the time that her kidney's continue to handle everything and they don't cause her any problems. I know they will eventually...realistically she will eventually need a transplant. I pray it is far into the future...maybe when they have found a different way of transplanting kidneys (hopefully with artificial or stem cells).

We have been having a blast this summer. We spend as much time outside as possible. The kids would be outside all day if I let them. Hope runs and plays with the boys and they are really good about including her. Jerry even picks her up and carries her over the rocks in the driveway so it won't hurt her feet. He is a great kid and so good with Hope. They have these little discussions and I know they are really close and I can tell Jerry knows Hope needs a little extra love and support sometimes.

With that said...I am thinking Hope is getting a little spoiled. Or...it is the terrible twos coming on a little early. There are days when she fusses all day and wants mommy to hold her all the time. I really don't think it is heart related because she only wants mom. It seems like a power struggle too. She does just fine and can play really well when I am not in the same room. If I go to the play room to check on her and the boys, she will scream to be picked up.

Finally...the other day we were all hanging out in the living room. My husband looked out the patio doors and saw a hawk on the picnic table by the lake (we have four picnic tables). It was a beautiful bird and I grabbed the camera. I thought for sure it would fly away when I tried to go take his picture. Nope...we found out he broke his wing and couldn't get away. I got a bunch of great pictures before taking him to this cool Raptor Center nearby. They take care of all sorts of birds and they are all wonderful people. I didn't know anything about the center, but it is now on my list to donate. They have hawks, eagles, buzzards, and every other kind of bird you can think of. Here is their website if you want to check them out.

Puppies, Puppies, EVERYWHERE

2011-07-10T22:36:00.000-04:00

Yep...we have a bunch of the cutest little golden-doodle puppies. Nine to be exact. They were born almost 3 weeks ago and have started walking this week. I feel like a new mom...waiting for their eyes to open, watching them try and walk, and now I am waiting for them to start eating on their own. I already have mine picked out...even though Jerry doesn't seem to think we are keeping one. If anyone wants a cute puppy, let me know. Both dogs are getting fixed. We have planned this litter since we had both dogs and figured the puppies would be cute as can be, but dog breeders is out of the question for us. I have no time or desire to breed dogs, but I just love my golden (Rex) and labradoodle (Olivia) and knew they would make cute puppies.

I will post some recent pictures in my next post. They are getting so big and so cute. Their personalities are starting to really show.

4th of July

2011-07-04T15:49:00.002-04:00

It is amazing to me how people forget the meaning of some very important holidays. The 4th of July is a very important day in the history of the United States. The Fourth of July is a time to commemorate America's declaration of separation from Great Britain that was made on July 4, 1776. Our freedom and our democracy that we have been blessed with is a direct product of the sheer determination from our forefathers who worked to establish the United States of America as a free country.

I love the 4th of July and spending it with family. It is always a day of picnics and late night fireworks. We did both yesterday...we have to work tomorrow, so staying out until midnight watching fireworks would not work for us tonight. The kids had a great time and with family...it is always a great day.

Happy Father's Day

2011-06-19T14:00:00.000-04:00

I am the father

My child was born with a heart defect

Its "my job" to be strong

And tell my wife things will be fine

And pray that I'm not wrong.

And still the bills need to get paid

And things need to be done

And it's so hard just sitting here

"I want to hold my child"!

I lean down as I watch her breathe

"Keep fighting", is my plea

"I thought I'd teach you to be brave

"But Hope, you have taught me".

I hear the beeping of all those machines

They're helping my child to live
I wish that I could take her place

Man, what I would not give!

To have the faith and strength I need

to hold back all my tears

to say I know she'll be okay

despite all of my fears.

I'd only fall down in defeat

when no one is around

I'd be the rock she surely needs

I'd stand on solid ground.

A daddy says," come to my arms

and I'll chase those monster's away"

This daddy's heart cries out to God

and says, "please let her stay".

A daddy needs to cry sometimes

and God must see right through

that " tough daddy exterior"

for He's a daddy too.

~Stephanie Husted

Happy 3rd Birthday Paul!!!

2011-06-16T19:32:00.000-04:00

My little man is three today. I can't believe how fast he has grown. I want to share my birth story with all of you, because it is amusing and if I don't write it down here...I will probably forget (do moms actually ever forget giving birth to any of their kids?)

Paul was the fastest and easiest labor and delivery...he really wanted to see the world. I wonder if that is a sign of things to come. It was 7:15 in the morning and I was typing up an email to a co-worker...trying to resolve a problem (which is basically what I do all day). We had Destiny because it was summer break...she and Jerry were still sleeping (ahhh...the good old days when everyone slept past 7). In the middle of the email, I started feeling funny and ran to the bathroom. I had seafood the night before and thought maybe it didn't agree with my pregnant stomach. Well...Paul basically dropped really far. My contractions were coming and wouldn't stop. I woke up Destiny and got Jerry dressed. My husband was already gone to work, so Destiny got to help me rush to the hospital. I called my husband on the way to the hospital at 8:17...yes, I checked later that night. We live in the country, but the hospital is only 15 minutes away...of course I have to take bumpy roads with railroad tracks...UGHHH. By the time I got to the hospital I was in full blown labor. I had a contraction at the car and then one by the time I got to the door. A really nice nurse rushed to get me a wheelchair. She wheeled me to the desk and they told her to take me to the ER. I asked her as nice as I could to get me to labor and delivery...I really didn't want to have a baby in the ER. I got to L&D and the nurses were nice enough to watch the kids for a little while. They took me to triage and I told them it would be a few minutes and I needed the doctor. I think they believed me because four of them were running around getting a room ready for me. I got to the room and told them to get the doctor to hurry up because he was coming out. My doctor arrived seconds later (in her shorts and a t-shirt) just in time to catch Paul. I am sure she was not happy to have her outfit ruined, but there was no way I was going to 'NOT PUSH'. Why would anyone ever suggest that? It is total craziness.

Paul is my only baby Jerry did not get to see born. He is also the only one where I was not induced. Destiny met him long before Jerry and it was a day I will probably never forget.

21 Months...Already

2011-06-14T23:54:00.002-04:00

Hope could spend the day in the swing.

Wow...Hope is already 21 months old. Time really does go by so fast. Not much is happening in our lives...just graduation and birthday parties, so this will be a short post with cute pictures.

Beautiful girls...Destiny and Hope!

Yes...she can even suck her fingers while she goes down the slide...amazing!

It Has Been That Long

2011-06-11T12:50:00.000-04:00

Hope and the boys like their lunch outside on their very own picnic table.

I can't believe I have not posted since May 21st...I think that is the longest I have gone without posting. It has definitely been because life has been going really good and we are really busy. This is the season of parties and we are trying to get to as many as physically possible. I always feel bad when we have too many things going on because we always miss something. We have decided to limit our time and only attend one party a day on the weekends...my husband would like to limit it to one party per weekend, but that is not likely to happen anytime soon.

Even Destiny got to help with the garden...she tilled it every time she came over. We are making a country girl out of her for sure!

The rain finally paused long enough for us to get the garden planted. We have corn, potatoes, onions, carrots, cabbage, tomato, broccoli, cauliflower, peppers (red and yellow) lettuce, melons, and strawberries. We only planted the stuff that we plan to eat or share with friends and family. We had originally planned our garden to be 35x65, but because of the rain we had to buy plants instead of seeding everything. So, our garden is now 30x50...which is still super huge to me. I am thinking I will be freezing as much as possible and sharing with everyone we know.

Sprinkler fun for everyone!

The kids are loving the time we can spend outside. I think they would be out there from 7 in the morning until 9 at night if I would let them. We are letting the chickens and our tame peacock out to roam and the kids get to search for eggs every day. So far the chickens are really good about laying them in the coop.

Paul is my little animal lover. So far this summer I have found the following in my house...toads, a snake (YUCK), a turtle, and tons of worms. They do know they are supposed to keep them outside!

That's about all for now. I have to get the kids ready for a graduation party today and then we have to run to Toys-R-Us to get some birthday presents for up-coming parties...including my little man, Paul.

Preschool Graduation

2011-05-20T22:33:00.000-04:00

Jerry getting his diploma from his 'big' teachers.

This is also known as my day of crying. The school where Jerry goes for preschool is amazing. It is a vocational school and they do such a great job. He is so ready for Kindergarten and I know that would not be true if he hadn't gone to preschool. The one reason I love this program is that he gets his very own high school student teacher. Miss Lisa did more to help my son that any mom could ever ask for. She taught a little boy that did not know his colors and now he knows that and so much more. The school is right down the street from our house (of course we live in the middle of nowhere so right down the street is a little different for us) and I can't wait for Paul to start in the fall. We had to pull Jerry out last year because we didn't want all those nasty little preschool bugs in the house while Hope was between her Norwood and Glenn, but this year...he thrived!

Jerry and Miss Lisa at the graduation ceremony!

OK...onto the crying (also known as watching your oldest in a cap and gown graduating from preschool). Like I said...the school is amazing. All of the kids were in caps and gowns and the big teacher (there are 3 teachers in addition to the 25 high school student teachers) gave them a diploma. First round of tears start...I must say that all us moms were pretty weepy the whole day. After that they sang. If you have never heard the words to "This Big I Am" you will not know why I cried so hard. I can't find the lyrics anywhere, but trust me...they would make you cry! The end of the ceremony was a video they put together of all the kids. It was basically the year in pictures and music...the music again was amazing. The ceremony ended and we all (teary-eyed) went back to the classroom where we had cake and juice with the kids. We bought Miss Lisa a mug with pictures of her and Jerry and it read "Thank you Miss Lisa...Best Teacher Ever!" which got her crying all over again. It made me so happy that Jerry touched her life as much as she touched ours. I don't know if I did this justice, but it was amazing and now I can't wait for Paul and Hope to go to preschool with all these great teachers. I also realized that every time one of my kids goes to Kindergarten, another one will be starting preschool. I also realized that Jerry is in the graduating class of 2024...WOW!!!

Jerry and his 'big teacher', Mrs. Keller.

I will end this post with some pictures of my little ones. They make my heart so full and I love them more than I could ever write in a post!

Yes, Paul is pushing Hope in a baby stroller...it is for her dolls, but she fits in it just fine.

Jerry was showing Paul all the cool stuff on the playground because Paul will be heading to preschool in the fall...as long as I can get him potty trained!

20 Months and Looking Back

2011-05-14T15:32:00.000-04:00

Today Hope turns 20 months old. What a wonderfully perfect day! She is amazing and such a sweet wonderful miracle. 2 years ago today I learned that Hope would be born with Hypoplastic Left Heart Syndrome. I wrote this post and it was my very first post ever. I never thought we would be where we are today. I cannot even begin to describe how I feel about that time. It was painful and something I would not wish on anyone. I remember many discussions about terminating my pregnancy, how difficult life would be, how she might not survive, how even if she survived she would have to undergo countless medical procedures and what kind of life would that be for her and our family. I think back to so many comments that were made and at times I get angry. I get angry at the people that make the comments and at myself. Now that we have gone through so much the self-anger is because I just didn't know. I know ignorance is bliss and not an excuse. I know that I should have spent a whole lot more time with positive people and not listen to the negative. I wish I had enjoyed my pregnancy more with Hope. I do have regrets, but I know that everything we went through was for a reason.

OK...off of that for a while. Hope is doing amazing. She is walking everywhere and I can hardly get her to sit down. I am hoping she will reach 17 pounds pretty soon because I really need her to be 18 pounds by our appointment on the 1st of August.

My Amazing Mother's Day

2011-05-11T12:08:00.000-04:00

Yes...a picture of my with my little Princess. This doesn't happen often and I can usually delete them, but my hubby said I have to include this one for Mother's Day.

I hope all you moms had a great day yesterday. My day was amazing. My husband let me sleep in until 10:30...I didn't sleep the whole time, but watched some TV and just stayed in bed until I got bored out of my mind. He got me some fabulous cheese danish and even though I really need to get some of this baby weight off, I ate two of them. Oh well...maybe I will start watching my eating again this week. After spending the rest of the morning hanging out with my family I got ready to have dinner with my mom and sister and the rest of my family. We went to this great restaurant that is on a small lake not too far from home. The food was great, family was perfect, and the view was spectacular. After dinner we went down to the lake and the kids had a blast.

We lucked out this weekend and had my step-daughter, Destiny. She is an amazing 13 year-old and we all love her so much. Hope is so lucky to have a big sister like Destiny.

Jerry loves the water and it was hard to get him out of the lake.

Mom should have thought ahead of time and packed the swimsuits. We took Paul's droopy pull-up off and he got to run around naked...he was so happy. Don't worry...by then we were the only ones at the lake!

My mom and Hope just hanging out. Grandma has tons of bracelets all the time and Hope loves to play with them. She is definitely a girly-girl. Thank goodness for Destiny, Grandma, and Amanda because mommy is not a girly-girl.

Jerry and Paul love their cousins...Amanda and Dominic got into the action on Mother's Day.

I Tucked Her Into Bed Tonight...by Stephanie Husted

2011-05-04T22:31:00.000-04:00

I tucked her into bed tonight

(And adjusted her pillow and blankie)
It's been a long exhausting day

(And she sure has been cranky)

She threw every toy from her toy box

And she tossed all her lunch on the floor

She begged me to go out to play

(She just wouldn't let go of the door)

Most people cannot comprehend

The things she has been through

They tell me... "I just can't imagine..."
"How you do all the things that you do."

I sigh... just because they don't realize

How could they ever know?
Just what a precious gift it is

To watch my child grow.

I still remember clearly

Our days in ICU

Hoping, praying, wondering

What were you going through?

Stroking your hand...feeling helpless

Whispering words in your ear

"It's alright my baby"

"Mommy is right here".

Helpless...scared...bewildered

Wanting to just see you smile

Thinking..."I"m not strong enough"

To make it through this trial.

Knowing that... not all children

Survive these surgeries

Day by day...with patience

Constantly praying...for peace.

And so...that is the "secret"

To doing the things...I must do

There is no perfect...inner strength

I guess God brought us through.

And so...when I see... footprints

All over my freshly mopped floor

Or gooey dried banana's

Smudged on the living room door

I wipe it off...with just a smile

Just praying for more to appear

These are my reminders

I'm blessed to have her here.

I tucked her into bed tonight

And as I walked away

I looked up for a moment...and said

"Thank you...for "today".

~Stephanie Husted

Easter in Pictures

2011-04-27T06:47:00.000-04:00

My pretty girl is walking everywhere.

Jerry is the only one that got to meet the Easter bunny. His school had an Easter party and I was able to attend and snap some pictures.

All the kids hanging out at Marilyn's on Easter Saturday (we got two Easter dinner's this year).

Easter morning. The Easter bunny bought sand buckets for toys this year...what a smart bunny!

Hope and Ava...aren't they the cutest little girls. Hope is 6 weeks older than Ava and I believe they will be best friends as they grow up. We had our second Easter dinner at Robin and Jerome's (Ava's mommy and daddy).

My little Princess Peanut! This is the longest she ever kept a clip in her hair. She finally took it out after dinner.

Bioartificial Organs

2011-04-15T23:01:00.000-04:00

This may be Hope's future. I am praying every day for advances in medical technology. I just don't think that the medical community has worked hard enough to figure out a way to keep human organs from rejecting when transplanted. That's why I am embracing the new technologies so much. You have to read this article from the Cleveland Clinic (our hometown hospital) on the Artificial Kidney that has already gone through Phase I and II clinical trials. I know human trials are coming and then it will be several years before they try it on kids, but really...how amazing. Hope's nephrologist told me about this study yesterday and I had to do some research on it today.

And at the University of Michigan, H. David Humes has created an artificial kidney from cells seeded onto a synthetic scaffold. The cell-phone-size kidney has passed tests on sheep—it's not yet implantable, but it's wearable, unlike a dialysis machine, and it does more than filter toxins from blood. It also makes hormones and performs other kidney functions.

Are you as amazed as I am? I hope so and I hope everyone has a chance to read this article in National Geographic on Organ Regeneration. Did you know that 30 people have received lab-grown bladders already, and other engineered organs are in the pipeline? I just sit here and imagine what this will mean for the heart babies not yet born.We have come so far and I pray that we continue to make progress in this and ALL diseases.

Nephrology and Nineteen Months

2011-04-14T20:55:00.001-04:00

This is the bench that my wonderful husband made me for Mother's Day when I was pregnant with Hope. I spent a lot of time on this bench wondering and worrying about my princess.

Hope is now 19 Months old! What an amazing little girl we have. I am so proud of our little girl and how well she is doing and how much she has accomplished. I look back probably a little too often, but it helps me realize what a miracle we have and how much we have to be thankful for. Hope woke me up at 1 this morning and kept me up until my husband left for work around 4. I love my sleep and miss it so much when it is broken up so much. But...the one thing that crossed my mind when I was wide awake and again woke up for the day at 7 is that there are a whole lot of moms out there that would give anything to be awake with their little ones in the middle of the night. I am so tired, but so thankful that Hope is the reason I am so tired. I do get cranky...don't get me wrong...but I have seen too many moms lose their babies since starting this heart mom journey that I find myself thinking more of the positive and less on the negative. Although...I would love to go to sleep around 10 and wake up at 8 fully rested and not feeling rushed.

Maybe she will take up surfing!

Onto the appointment from yesterday. Ughh...I was not looking forward to it at all. I am not fond (that is being really kind) of Nephrologists. I have had really bad experiences with them with Hope and I am bitter. Anyway, we got to the appointment on time (because that is what we do). We waited about 1/2 an hour in the waiting room and then got the weight (not bad...not good, but not bad), blood pressure (great...95/67), pulse ox (great...87), and temperature (not sure what it was, but it was good). Then we went back to the room and waited...and waited...and waited some more. Finally the nurse came in and talked to me for a while. Weight was brought up again as were her kidney numbers from her last blood test. They are the same (not great, but the same) so no one is worried. That made me feel really good. Of course, we had to wait for Dr. Kwan. He finally arrived around 2 (or appointment was at 1) and we talked for a while. I had a bunch of questions (no surprise for any of my regular blog readers). He is concerned about Hope's weight and really wants us to work on weight gain...like big time work on it. I am thinking that if Hope does not gain some serious weight by July that we will be talking about a G-tube. I am VERY resistant, but I don't want to put Hope at risk for any problems by resisting something that may help her in the long run. Anyway, I learned some cool stuff that I thought I would share. They are in trials at the clinic for an artificial kidney (it is adults only right now) and it sounds really promising. I am totally confused when it comes to transplants, but from the little I have learned, it is better to get a machine that a donor organ because then you don't need all of the rejection medicine (which has its own problems). I could write for hours on my thoughts about progress in the transplant field (like why haven't they made more progress in rejections), but I will end on this note...stem cell research is growing (finally) and will change the world of medicine and save MANY lives.

Walking

2011-04-12T22:26:00.000-04:00

Hope is WALKING!!! All on her own, unassisted...WALKING. She is amazing. I don't know how to express the emotions I am feeling right now. I try so hard to forget what we went through before she was born and the first few weeks of her life. I remember sitting on the bench my husband made me for Mother's Day thinking that I would never see Hope enjoy our beautiful house and the wonderful yard we have. I remember crying so much before she was born as I watched the boys playing in the sandbox, on the swings, and running around our yard. My heart broke thinking that Hope would never experience all of the amazing things the boys have been able to enjoy. Tears still come to my eyes today as I remember that time. I am overjoyed that Hope has been able to swing, play in the sandbox (although she hates getting dirty, so that is always short lived), and now walking around the yard. She loves the peacocks and chickens and spends a lot of time playing with them. She has made a friend in Petey (she is a peacock that I tamed when she was young and will go on my arm and eat from my hand). All of the things I never dreamed were possible...they are possible and happening in our lives.

A couple of our peacocks. We will be having babies soon.

I know Hope is medically fragile and always will be. I am reminded of that when her nurse comes to weigh her...and I find myself hating those days. I hate that I can't get her to gain weight...that we may have to resort to a feeding tube at night. But...I love that she loves to eat. She will eat anything and loves to eat. She may only take a few bites, but she does love to eat. She burns her calories so fast that a G-tube has been mentioned on more than one occasion. I don't want to think about it and I know it will be hard on all of us if we have to resort to it, but I also want her to be as healthy as possible.

Now for a few more fun pictures...my post was getting too serious again and we are heading to the nephrologist tomorrow.

Jerry had school pictures today. He got all dressed up and looked so handsome!

My little cutie. Paul is growing up so fast.

Not much happening

2011-04-08T19:31:00.003-04:00

It seems like when not much is happening around here I find it difficult to post anything. We are getting ready for a visit to the Nephrologist (kidney doctor) on Wednesday. I worry about these appointments as much as the cardiology appointments. We have been told that Hope will need a kidney transplant someday and every time we go to the kidney doctor, I worry that he will find her in kidney failure. I know the signs and I don't see them in Hope, but I worry that I won't catch something and it will go to far. I am planning to meet with a few other kidney doctors this summer. I am not a fan of them at all and would really like to find one that I feel comfortable. It really is not an easy task because the doctor that made the decision that Hope was not a good candidate for the Norwood was a nephrologist and the most negative person I had ever met. It seems like a pattern...these doctors are not positive people at all (at least the ones I have met). I know she was born with crappy kidneys and neither of them work 100%, but they are still working and I don't know why the doctors can't focus on that instead of the negative all the time. I often think I live in denial about her kidneys and in some ways I am sure I do. She has a major heart defect...I think that is more important than the kidneys. I don't want to focus on something that I don't know as much about...and I now know about the heart. I have tried to learn about the kidneys, but they are even more confusing.

For not much happening, this post has turned into a long ramble about my worries. I guess I didn't realize how worried I have been about this appointment. I will update more after the appointment because we are all enjoying the fact that there is not a lot to post about!

Hope - by Stephanie Husted

2011-03-31T21:50:00.000-04:00

Running...through my life so grand

No need to stop

Or understand

God is good...life goes well

No need to stop

Until I fell.

And when my life

Came crashing down

Like puzzle pieces

On the ground.

I didn't want

To stop and pray

Or listen to others

That said, "it's okay".

A pat on the back

We're praying for you

We know of the pain

That your going through.

But do you, I wonder?
As I stop and sigh

Do you imagine each day

That your child may die?

Just live for the moment

I say, with a smile

But inside I'm thinking

I'm tired of this trial.

You see tired eyes

And nails unfiled

But I see a mother

Who just wants her child.

Too many angels

Too many tears

Too many memories

That add to my fears.

I've sent many cards

Of caring concern

To parent's now grieving

Lord, help me discern.

Is this your plan?
Can it really be?
Is this your way

To make us all see?

It's not fair! It's not fair!
I just can't stop thinking

With my head above water

I feel myself sinking.

I try to imagine

Not hearing her giggles

Not seeing her smile

Or watching her wiggles.

Is it so very wrong...
That I feel this way?
That I let fear creep in

And steal hope for today?

Should I dream for tomorrow?
Dare I even believe?
That things will be fine

That I'll never grieve.

But what is life

If hope's not a part?
And what is hope?
But a dream in your heart.

I'll hope...believe

I'll dream and pray

For one thing is certain

And that is, "today".

~Stephanie Husted

Since my last post

2011-03-25T20:46:00.000-04:00

Hope has been sick with the flu. I took her to the pediatrician last Tuesday with a fever and after they swabbed her for Strep, they decided to check for the Flu. Influenza A = Positive! Yikes...what happened to the flu shot we all got this year? I don't like taking Hope to the doctor at all...too many bugs. This time I knew something was wrong because a fever = infection of some sort. No one else in the house managed to catch it, but Hope is the last one that I wanted to get it. She has managed to lose 11 ounces, so we are back to 15 pounds. It was heartbreaking when her home health nurse came this week. I knew it was going to be bad, but really didn't think it would be that BAD. It takes her so long to gain an ounce and to know that she lost 11 ounces, I cringe at the thought of how long it will take her to get back to 16 pounds.

So...we have been confined to the house again - well outside too. I took Jerry out of school and we have avoided everyone. I know the boys didn't catch it, but I am sure they would carry that virus with them and spread it all over. I wish other parents would do the same, but I know it is something I will just have to worry about forever. It did get me approved for home health care every week for the month. I love our home health nurse...I will have to take her picture next time she is here. She is wonderful and feels like part of the family. I am hoping we can keep her until Hope turns 18...she makes me feel so much better when I don't know whether something is wrong or if Hope is doing fine. She has taught me how to listen to her lungs to make sure she is not congested. She is just amazing.

Now...onto my second job. I am working with an adult CHDer to help put together the Congenital Heart Walk in Cleveland. If you haven't already, please head over to Hope's Heart Warriors and sponsor us for the walk...or better yet, create a team and join us and many other heart families in the walk.

18 Months, Walk, and More

2011-03-14T05:22:00.000-04:00

Hope turned 18 months old today...AMAZING! She is absolutely adorable and her personality is just the cutest ever. She laughs, smiles, and talks all the time. I can't understand a word she is saying, but she carries on a conversation. She is still hanging on to everything when she walks, but I know she will do it on her own sometime soon. I don't mind because I know life will get that much harder when she is walking on her own and able to get places so much faster.

This past weekend I had the privilege of getting together for lunch with a bunch of heart moms, Hope's dietitian (whom we love and respect and don't know what we would do without her in our lives), and my newest inspiration...Alicia. Alicia is 31 years old and has HRHS and Heterotaxy. She is beautiful, funny, smart, and just the nicest person. She is taking the lead on the CHF/ACHA Congenital Heart Walk in Cleveland and also works at Rainbow Babies and Children's Hospital. She works with the new Cardiothoracic Aurgeon as well as the Interventionist Cardiologist. She sees baby hearts all the time...words cannot express how much I respect anyone that is able to do that...especially a CHDer. She gives me so much hope and inspiration and I am so blessed to know her.

I could go on and on, but I want to spend a few minutes trying to recruit my readers to form a team for the Northern Ohio Congenital Heart Walk. Our Walk will be taking place on September 17th at Wade Oval Park in University Circle at 11am. The website is below...please register either for our team or create your own team. If you are out of the area and would like to sponsor our team...we would love it. I am so excited to be working on this walk and hope it is a great success.

Our team is Hope's Heart Warriors.

Glenniversary

2011-03-08T18:09:00.003-05:00

Today was the day...one year ago. I had to hand my beautiful daughter over to Dr. Mavroudis once again to work on her little heart. It is another day I will NEVER forget and always look back on in ways I can't describe. Hope had been home for almost 5 months before the Glenn. We got to know our beautiful princess outside of the hospital. We went through so much before her Norwood and the thought of her Glenn scared me even more. I spent weeks worrying...since the day we had a date scheduled. It breaks my heart when I think of everything Hope has been through and the thought of what she will have to endure at least one more time.

Check out the glasses...they are Build A Bear sunglasses that you usually buy for your bear. I had to buy them for Hope because they fit so well and she looks so darn cute!

Hope's Glenn went pretty well...she was put on bypass 3 times because she had problems coming off. They had to make her left pulmonary artery bigger. Her stay was fairly uneventful...although she did develop Pneumothorax when they took out one of her drainage tubes. They caught it really fast and for that I am grateful. It did increase her stay in PICU because we were going to be moved to Step Down the next day. Even with the minor (they seem that way today, but I can assure you that they didn't feel that way a year ago), she was home 5 days after her Glenn. It was miraculous! It was so different than the Norwood and I am hoping the Fontan will be a whole lot like the Glenn.

Look at all my cuties. They are all in Jerry's bed...they all do have their own beds!

It has been a while

2011-03-02T20:22:00.000-05:00

and so much has happened in the heart world. I hate these weeks when heart babies pass away. It is heartbreaking and also brings out an anger in me that we can't 'fix' all of the babies. There are some days that my mind works overtime thinking about all the different ways I think we can fix our little ones...technology that does not exist. I think about how long transplants have been around and it really bothers me that we have not been able to figure out how to keep people from rejecting donated organs. It seems like it is something we should have figured out by now. I feel like we should be further along and I often wonder if it is because so few doctors are pioneers the way they used to be. Do we just have great surgeons, but no one that can think outside the box and figure out a way to actually fix our babies? Maybe it will be something mechanical, maybe a different surgery, maybe some medicine...something. I don't know, but I know that babies dying from CHDs is totally unacceptable...babies dying from anything is totally unacceptable!

Onto some other news. Anyone in the northeast Ohio area is invited to a luncheon with Hope's dietitian. She will be talking about diet and effect on heart kids of all ages. She will be answering any question you might have related to food, feeding, etc...She is a wonderful dietitian and we love her...she has given us some brilliant ideas. She will be meeting any heart family that would like to join us on March 12th and Buca Di Beppo in Strongsville, Ohio at South Park Mall at Noon. Lunch will be $17 per person. Children 4-9 are half price and under 3 are free. Even if you have no questions, please join us to meet other heart parents from the area.

Finally...we have a date! The Congenital Heart Walk in Cleveland will be help on September 17th at 11:00am at Wade Oval in University Circle. The website should be up soon and I will be posting a whole lot more information here as we get things rolling. I am really excited to be helping with this wonderful fundraiser for The Children's Heart Foundation and the Adult Congenital Heart Association. Both organizations are very near and dear to my heart and our walk will benefit both organizations. I hope that if you are in the area you will consider walking on Team Hope or forming your own team! We are looking for a HUGE turnout for this event. If you know of any company that would like to sponsor the walk, please let me know. We will provide a LOT of recognition for any corporate sponsor.

I am going to finish this post with some pictures...enjoy.

Yep...baby gate is now up!

It was actually in the 50s...still snow, but warm for Ohio. Our weather has been crazy cold and snowy this year.

We can't wait for SPRING!

Here's my Every Heart Has a Story - How CHD Affects your Relationships

2011-02-15T12:30:00.000-05:00

This blog event is going to be intense because anytime you have a sick child, relationships are going to change. They seem to get stronger in the beginning, but slowly...over time they change. I am going to start with the relationship that changed the most...that with my husband. We had not been through much in our relationship...a couple of babies and buying and remodeling a house together. It is truly amazing how much we have grown in the past year. We have cried, yelled, smiled, and laughed. We have grown together and have learned so much about each other and our relationship. My husband cried when each of our kids were born...he couldn't stop crying when Hope was born. He is my rock...whenever I am scared, he is there for me. He has had to calm me down many times...some have been in the hospital when I had very little sleep and almost went overboard talking to a nurse. I remember the day we were told that the doctors at the first hospital would not do surgery and they thought Hope did not have much of a chance of living. We left shortly after they told us to come home and spend time with each other deciding what we should do. We should never have gotten in the car and I don't know how we made it home between the tears that were shed in the car. I realized at that moment that my husband and I were on the same page...we would do anything to help Hope live.

You can see the tears in his eyes...this is my favorite picture of when Hope was born.

My friendships started to change when I had my first son, Jerry. Prior to that, most of my friends were single with no kids. After Jerry was born, many of those friendships changed, so when Hope was born...it was no surprise that the friendships that remained would change as well. I don't mind so much anymore because I have made some wonderful friends within the heart community. We all share so many thoughts, experiences, and emotions that it is natural to become friends.

Family relationships have grown stronger. My family has always been pretty close and with Hope we are closer. Everyone went out of their way to help when Hope was in the hospital. My mom took time off work and my sister was there whenever we needed anything. Jerry's sister lives close to the Clinic and it was perfect to drop the boys at her house on our way. Everyone was supportive when Hope came home after the Norwood and totally understood that she could not get sick. It was hard for everyone, but we got through with only one cold. Now that Hope has had her Glenn, we feel a little more comfortable. I still won't taker her around family when they are sick, but we do go out and she has had her share of colds. Hope still has her Fontan and I know our families will be there for us. It is harder now because she is just like any other little one and doesn't look sick at all. I think many people forget how sick her heart is and how bad it is if she gets really sick.

Jerry's mom and dad

My brother, John...all 6 foot 7 inches!

Mary - my stepmom

My mom and her sister...my Aunt Betty

My mom and her brother...my Uncle Mike

My sister...and her family went out of their way to help us. They put thousands of miles on their car, always made sure they were available, and fed us when we didn't have time to eat.

Jerry's sister, Gerileah and her son Daniel

Jerry's sister, Danielle and her husband, Greg

My mom...she is the best. She took a lot of time off work to make sure someone was always with Hope and to make sure the boys were taken care of as well.

Now for the relationship that I think has changed the most...my relationship with my kids. I never thought about losing any of my children...it just doesn't happen. Then I had Hope and I realized how precious life really is. I realize there are no guarantees in life. It is a harsh reality, but one that makes all relationships grow stronger. My boys have been through a lot. I took Jerry out of preschool last year when Hope was between her Norwood and Glenn. It was hard for everyone, but the boys went through the most. They were shuffled between family members and they didn't see much of mom or dad for the first 6 weeks after Hope was born. The Glenn was a little easier...only 6 days, but still difficult because Jerry and I were at the hospital the whole time. More shuffling and schedule changes and just not seeing us very often. They have lived with therapists and nurses visiting Hope all the time. They have lived with feeding tubes and medicine for Hope...a lot of attention on one little girl. I try and spend time with each of my kids by themselves so they feel like they have my undivided attention. I know it doesn't fully make up for the attention that Hope gets, but I hope it helps a little.

My beautiful step-daughter, Destiny.

My oldest, Jerry

My middle child, Paul...we have a lot in common

My beautiful family!

I definitely want to thank Stef for putting this blog event together. It is great to be able to share our lives with everyone and get to know so many wonderful families. The best is knowing that we are not alone...in the good times and bad...someone has shared our feelings.

Walking

2011-02-11T22:22:00.000-05:00

Yes...she is really walking. Only a few steps, but she is doing it all by herself. Everyone keeps telling me that someday soon she will just take off and start walking everywhere. Ha...they don't know Hope. She will continue her little steps until she feels 100% comfortable that she will not fall or get hurt. She doesn't like to just plop down on the ground...she likes to daintily sit herself down. She is extremely graceful when she 'falls'. I wish I had a video to show you her gracefulness.

Onto some other things...CHD week did not go as well as I had hoped. I have not made it to the Clinic to drop off the bags. I even know a mom that is there with her son and still can't find the time to get there. Work has been crazy busy and so have the kids. If I don't make it before the end of CHD week, I will definitely try to get there by the end of next week.

There are a lot of little ones that are going through so much right now. I don't know how to capture all of them that need your prayers, but I am going to try:

Logan is an amazing little guy and his mom has become a close friend in the past 6 months. Logan went to Boston and did amazing through his cath. They were all getting ready to come home and the surgeon decided it would be better if they went in and made his confluence bigger through surgery, rather than just keeping it ballooned. I was really hoping they would be home this weekend because we are all healthy at my house and that doesn't happen often.

Frankie is another little guy that I plan to meet sometime soon. He is at the Clinic and his mom and dad went through a lot of the same stuff we went through with Hope. They were told to take their little guy home to die and thankfully they decided to get a second opinion. I am so happy and I am praying Dr. Mavroudis will work his magic on Frankie like he did for Hope.

I have been following Emma since she was born in October. She is an amazing, beautiful little princess. She also wears the most beautiful bows I have ever seen. I wish Hope would wear a bow like hers for more than a minute...she absolutely hates them. Anyway...she is waiting for her new heart and needs your prayers. She has not been home and I know it would make her parents so happy to bring their little girl home...especially with a brand spanking new heart.

Jet is a little sweetheart and is currently waiting for lungs. His family has gone through so much with their little man and I can't imagine how hard it would be to be separated from family for an extended length of time. I admire his family and the friends and extended family that have been there for them. Please pray for lungs for little Jet and also keep him in your prayers as he will be having a cath on Monday.

I wait for updates on Parker every day. This little guy is so strong and has shown everyone that has followed his story a miracle in the making. His mom shares her fears on his CaringBridge page and it brings up so many memories. She writes and shares better than I ever could and it inspires me and I can actually feel what she is going through. Please keep them all in your prayers.

CHD Awareness Week

2011-02-07T23:08:00.000-05:00

When Hope was in the hospital we got an amazing bag of goodies from a parent that spent time in PICU with her son. It was filled with food, water, and stuff to do. It was wonderful and I got it on a day when I really needed something to take my mind off everything that was happening. I knew I wanted to do something similar this year for the families and I finally got some bags together. I will be delivering them to The Cleveland Clinic Children's Hospital one day this week. I don't know what day yet...it will depend on how busy the week is at work, but it will definitely be by Sunday of this week.

A few other things to share. Hope took her first steps today and it was amazing. There are certain milestones that just hit me...walking is yet another one. For any parent that has been told they should take their baby home to die and be able to see that same baby 16 months later taking their first step...AMAZING! I didn't have a camera handy, but I am including a cute picture of her 'shopping'. She has been pushing stuff for a long time, but her first unassisted steps brought tears to my eyes.

I hope everyone has a great week.

Awareness Month

2011-02-01T18:39:00.005-05:00

Today marks the first day of Heart Month. This is the month to bring awareness to heart disease and for me it is a month to bring awareness to Congenital Heart Defects. Heart disease affects many people and much funding is raised in support of heart disease. I would like to see Congenital Heart Defects receiving some of the funding as well. The statistics are staggering (the following is from The Children's Heart Foundation...a foundation that is near and dear to me and my family:

Incidence, Morbidity & Mortality

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.

Lifelong Disease

Almost half all children and adults with complex congenital heart disease have neurological and developmental disabilities.
There are an estimated 2,000,000 CHD survivors in the United States.
For the first time, more than 50% of the CHD survivors are adults.
10% of all CHD cases evaluated in an Adult CHD clinic are first diagnosed in adulthood.

Economic Factors

91,000 life years are lost each year in this country due to congenital heart defects.
The cost for inpatient surgery to repair congenital heart defects exceeds $2.2 billion a year.

General CHD FACTS

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.

CHF

The Children’s Heart Foundation is the only organization that was created to exclusively fund congenital heart defect research.
The Children’s Heart Foundation has directed $3.9 million to 41 basic science, translational and clinical CHD research projects at leading research centers across the US and Canada.
CHF has published and distributed 35,000 English and 3,000 Spanish copies of It’s My Heart, a patient and parent resource book.
CHF has established eight Chapters and has volunteers in many US states.

Research Allocations & Impact

Congenital heart defects are common and deadly, yet CHD research is grossly under-funded relative to the prevalence of the disease.
Only one penny of every dollar donated to the American Heart Association goes towards congenital heart defect research.
Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research.
The NHLBI has stated that Congenital Heart Defects are a serious and underappreciated global health problem.
In the last decade death rates for congenital heart defects have declined by almost 30% due to advances made through research.

Most Days I am VERY Happy

2011-01-21T20:42:00.000-05:00

but...days like today SUCK. I know it is the 'google' depression. Spending too much time on 'google' and then thinking about all my little girl will have to endure in her life. It is NOT fair. I hate thinking about everything and I hate the tears that have been flowing so steadily all day today. This post is going to be long...I can feel it already. I can't stop thinking and am typing as I think, so bear with me. I don't usually have really long posts, but I just feel the need to write out my feelings today...good and bad.

I know there are a lot of people that believe that God does not give us more than we can handle, but I don't feel like that today. I don't understand why God would give my daughter so many health problems. I don't know why God would want so many heart angels. I am having a un-God-ly day today. I am not super religious and when days like this hit...it makes me question everything I have ever believed.

Here are just a few of the thoughts that have been running through my head (just to give you an idea of what days like this are like). It is sort of like a story we had to write in school - who, what, when, where, and especially WHY:

Who would make a child go through all of this in her life? Is it God...maybe. Is it us because we didn't listen to the doctors before she was born and then after when they told us to take her home to die...probably. Were we wrong? I don't think so and I wouldn't change anything. I know there are people out there that would not agree with our decision. I have heard that we are selfish and only doing what is in our best interest...I think that is a crock, but I can understand the theory. Who would knowingly want their child to have open heart surgery? You know how I answer that...you just don't know what might happen with any of your children in the future. My perfectly healthy boys may develop some issue in the future (please God...no more) and I don't think anyone would tell us not to fight for them with every fiber of our beings.

What can we do to fix Hope? This is something that I think about all the time. I am a fixer and so is Jerry. It is so hard to know that we can't fix her...that we NEED a team of medical professionals to help fix her. We actually realize that because she only has one ventricle she will never truly be fixed. And...transplant brings it's own set of problems. We would do that for her too. If anything ever happened and she needed a transplant, we would list her in a second.

Where is the best place for Hope to continue with treatment. I have thought a lot about this because I want to make sure she receives the best care possible. I love her doctors at the Cleveland Clinic Children's Hospital. I am comfortable there and know they will do everything possible for Hope. It is close to home (well close enough). But...in the back of my mind I think about CHOP and I wonder if their single ventricle program is something Hope she be a part of. I have had parents tell me that they don't understand why I don't take Hope to the 'best' hospital...why I want to stay local. I feel comfortable and I know everyone will work extra hard for Hope. The doctors are great and even though they are not the best known doctors, does not mean they don't perform a lot of surgeries or that they don't know what they are doing. The week Hope was born, Dr. Mavroudis performed at least 3 other Norwoods that I know of...probably more that I didn't know about. That is a lot. All of them are doing great today...post Glenn. To me, that is 100% success. I am staying where I am at...especially with that success rate!

When...this is the hardest question for me because it takes me to a place I don't ever want to go. When will Hope die? Will she outlive me? I pray for that every single day. No parent should ever have to bury their child. When will she have her Fontan? Will she be big enough? I don't know the answers to those questions. Best guess...during the summer of her 4th year is when I am thinking it will be done...maybe her 3rd year...so 2013 or 2014. When will her kidney's fail? NEVER is what I pray for every single day! Hope has proven to be a medical miracle and I pray that continues for a VERY VERY long time. This is the one area I don't let myself go to very often. I hate it and I hate thinking about it. The very thought that we may have to bury Hope is unbearable. We treasure every minute and appreciate life so much more because of all she has been through...but in the back of my mind sits this horrible thought.

Why Hope...I have lived my life...done everything I have ever dreamed of doing. I have done more living in my 40 years than most people do in their entire lives. I have seen the world and stayed in some of the nicest places you could imagine. Why couldn't I be the one with all the health problems. I would understand life so much better if it were me that had to go through open heart surgeries and probably a kidney transplant. Adults should go through these things...not kids. Kids are innocent and should remain innocent. They should not be afraid of doctors and nurses. They should not be afraid of the hospital. They should not have to spend time in a hospital room. They should not be poked or prodded or have any type of surgery. They should be able to live and be happy and never have to understand any of this stuff. My oldest son knows Hope has 1/2 a heart. He knows it will be a long day when Hope goes to the doctor. He plays extra special with her when she comes home. He knows all of her home health nurses by name and loves them as much as Hope and I. My boys should NEVER have to know any of this...they should NEVER have to be afraid. I worry about them and what affect all of this will have on them. I pray it will make them more compassionate and caring boys/men.

OK...I am done. I am emotionally spent and don't want to think about any of this anymore. I know it will always be in the back of my mind...and it will stay there. I would love to believe these thoughts will never come back, but I will try and make them stay where they are...in the back of my mind. I plan to get back to the positive life I have been living for 40 years. I will cherish my life, my husband, my kids, and everything that goes with that every single day. It is how I live and will continue forever. I am grateful for the life I have led and will continue to lead. I am blessed with so much and I will focus on that and stay away from the stuff that brings me down.

Appointment Update...Heart Good - Kidneys Not So Great

2011-01-19T20:07:00.000-05:00

You know...isn't it bad enough that my little princess has to have half a heart, but to include kidney issues is just really sad. Prior to her birth, we were told that she would not have one of her kidneys. When she was born we were told she had both, but one was very small. Now, it seems she has kidney dsyplasia in both of her kidneys. Here is some information I found on this:

In kidney dysplasia, the internal structures of one or both of the baby’s kidneys do not develop normally. Fluid-filled sacs called cysts replace normal kidney tissue. Kidney dysplasia usually happens in only one kidney. A baby with one working kidney can grow normally and has few, if any, health problems. Babies with kidney dysplasia affecting both kidneys generally do not survive pregnancy, and those who do survive need dialysis and kidney transplant very early in life.

So...Hope is a miracle. Many babies with kidney dysplasia in both of their kidneys do not survive pregnancy. Hope...even after two open heart surgeries which adversely impact kidney function...has not needed dialysis and is more than alive...she is thriving. Just another miracle to add to the list. I know her outlook does not look great...she will probably need a new kidney someday. We are hoping she will prove everyone wrong and never need a new kidney.

Now...onto the good news. Her heart function looks good. Her sats, blood pressure, and echo all looked good. Her tricuspid valve is not leaking much at all...actually they didn't see any on the echo, but it probably is leaking a little bit. We don't go back for 6 months! I can't believe we are free of the cardiologist for 6 whole months. AMAZING!

Of course...the biggie at both appointments...her weight. It just doesn't seem to be going anywhere. She isn't gaining or losing. She is staying basically the same...almost 16 pounds. It is frustrating and depressing. It is the one thing I really thought I had some control over, but I don't. No matter what I do, she doesn't gain. UGHGHH...it is driving me insane. I am still trying any and all ideas, but to no avail.

The rest of life seems to be moving along. Hope will stand unsupported now, but still hasn't made that first step. I know she will in her own time. She babbles all the time and is saying quite a few new words...mommy is her favorite, followed closely by daddy.

My little ones love to take baths...they could spend the whole day in there. I don't want to hear about how I shouldn't take these kinds of pictures...my parents took hundreds of pictures of all three of us (me, my sister, and brother) in the bath together...they are cute!

I hope everyone is having a wonderful new year. I think of my heart family often and you and your little ones are never far from my heart.

Good Bye 2010...Hello 2011

2011-01-01T21:18:00.000-05:00

We are ending 2010 with so many blessings and feel so good going into 2011. 2010 has shown us the strength of family and friends...old and new. It was a year of growth and learning. There were ups and downs...just like every year, but we got through each of them appreciating the ups and weathering the downs.

I have used my blog to keep everyone updated on the happenings in our family...especially with Hope. I plan to keep it up and share more of our lives in 2011. As a family, we have resolved to spend more time with each other and get healthy. We have put off our own health for so long and this is the year to regain it and hopefully the hubby and I can lose some weight we have gained over the years.

We hope everyone has a happy, prosperous, healthy New Year! Here's to 2011...may it bring you all your hopes and dreams.

Merry Christmas and Happy, Healthy New Year

2010-12-24T09:22:00.000-05:00

MERRY CHRISTMAS AND HAVE A HAPPY, HEALTHY NEW YEAR!

Yes...I am reusing our Christmas picture. I love it and we really haven't had a chance to get pictures taken this year.

I wanted to share this great poem from Stephanie. She is the BEST and can express feelings so much better than I.

Twas the night that you joined us, all eyes were on earth
Waiting with joy, for our sweet child's birth.
The angel's stood ready, for each need and care
But all of them knew that the Lord would be there.

And I did my breathing and daddy was scared
We waited and wondered and hoped we'd prepared.
We knew you were special but so very sick
Yet hope had grown in me with every kick.

Soon it was your time, into this world you came
I heard a soft cry,then I called out your name.
And doctors and surgeons and nurses on call
I looked down upon you, so fragile and small.

And God took your hands while angels stood by
Since I could not hold you they hushed your soft cries.
One small angel looked to the father and smiled
"Can you truly teach hope through such a small child"?

An infant so helpless a baby so new
"Oh please tell me Lord, is this what you will do"?
God looked from the angel to the baby's sweet face
"Through her my young charge, they will learn about grace".

I penned this child's journey quite a long time ago
And through her great courage such true love will grow".
Every hair on her head has been numbered you see.."
It's my hope that through her, they will learn to see me.

Oh my little one with a special heart
Great love will see you through
See look that is your family
They've waited so long for you.

I send you to their waiting arms
For a time we'll be apart
But I'll always be with you
For I live within your heart.

And so we held you in our arms
And we thanked our Lord above
We see in you the miracle
Of His undying love.

So when it's Christmas morning
And I watch my children play
I'll need no great reminders
For I see my gifts each day.

~Stephanie Husted
mom to Braeden, age 6, HLHS

Look Mom...No Hands

2010-12-22T18:16:00.000-05:00

That's right...she is happily showing off not holding onto the furniture. My little girl can move around furniture like it is nothing, but this week she has decided to let go. Not for long and she won't move, but she is letting go. It makes me so happy...and yet scared as well. Letting go means almost walking which means eventually she will be free to move around the house...just like the boys. Independence for my little girl means giving up the control of her surroundings...something I fully admit that I am not good at giving up. I know...the boys walk and are free through the house. They get into stuff all the time. I don't know why Hope doing it is making me so nervous, but it really is scary for me. She has been my little baby for so long...longer than my boys. Her being so small also makes a difference...she looks like she is 6 months old.

I will post before Christmas, but I wanted to share the news today!

15 Months

2010-12-14T23:23:00.000-05:00

Time flies and the days fly by so fast. I can't believe Hope is already 15 months old. She is changing and learning so much every day. She has started standing on her own, but only for a few seconds. I know when she gets comfortable, she will take her first step. She is talking like crazy...not really understanding too much of what she says, but it sure is cute. Notice that I did not say how big she is getting. She seems to have hit a plateau...still trying to get back to 16 pounds. I really thought she would be in 12 month clothes this winter and I am beginning to think she will wear out the 6-9 month clothes that she has been wearing since summer. Oh well...I refuse to get worked up about the weight anymore. She eats good and takes her bottle a few times a day. She will gain at her own rate and now I get to convince her pediatrician and cardiologist the same thing.

We are still trying to get ready for Christmas. The tree is up and a few gifts have been bought. We are planning a big shopping trip for the weekend when my mom can watch the kids. No Christmas cards this year. I am hopeful every year that we will get them made, but it hasn't happened since before Paul was born.

Now to share some great pictures!

Just waiting to see the cell phone bill as she gets older.


Frogger is the greatest cat in the world. He may look upset, but he loves the attention!

They are always into something.

I Hate These Posts

2010-11-29T15:02:00.000-05:00

The hardest posts I have to write are when I find out another person with a Congenital Heart Defect (CHD) has lost his/her fight. I hate it and I hate that CHDs take the life of anyone. It is sad and a little more of my heart breaks each and every time.

Today it is with a VERY heavy heart that I share the passing of Steve Catoe. He is an adult CHD warrior and the voice of many excellent posts about CHDs and life in general. I never had the opportunity to meet Steve in person, but learned a lot from him online. He shared so much of himself through his posts and always shared on Facebook as well. Steve will be missed by many and their are a lot of tears being shed in the heart world today. RIP Steve...and give the little CHD angels hugs and kisses from all of us.

Another CHD warrior also earned his wings recently. Andrew was almost 4 years old and is welcoming Steve to heaven. It breaks my heart to read through his blog and realize that he was doing so well and yet his CHD took his life. It scares me all the time and I worry almost daily that something might happen to Hope. It brings her heart defect to the forefront of my life when another CHD warrior earns his/her wings.

Please be sure to say a prayer for their friends and families.

Happy Thanksgiving

2010-11-24T22:26:00.000-05:00

The thankful and giving season is underway and what a beautiful time of the year it is. I love this time of year and am so thankful for so much this year and every day. I am thankful for such a wonderful family and friends. Real life and online friends have shared so much with our family this year and it has changed my life forever. I have met so many wonderful families and made great friends and am thankful that when I was lost...so many people rallied around and helped me find the courage and love to endure everything we have been through this past year.

Every year we spend time with our families on Thanksgiving and this year is no different. We will be going to their houses this year which is different than last year. Last year Hope had been home from the hospital for only a few weeks and we were not going anywhere. We had family come over...as long as they were not sick. We cooked and fed everyone and let family and friends spend time with Hope and our family. It was a miracle and we wanted to celebrate with everyone. This year will be great as well because I don't have to cook and we will be able to spend time with family.

We have not started Christmas decorating yet...no time. I wish I had more time in the day to get done everything I would like, but days are not getting longer so it will wait. I know we will find the time to decorate and get Christmas together. Even if we didn't...we still have our family and that makes the holiday season complete.

Happy Thanksgiving to all my friends...I know you have a lot to be thankful for this year!

Hope's First ER Visit and a SPECTACULAR Abstract

2010-11-22T13:08:00.000-05:00

Anyone that knows me knows that I am not overly paranoid. When my kids get a cold, we wait it out. I don't rush them to the doctor or the emergency room. To be honest, we have only been to the emergency room one time before and that is when my youngest, Paul, feel and got a huge cut on his forehead...needing 4 stitches. I just don't like the emergency room and prefer to wait and call the doctor or go in to see her.

So...for me to take Hope it had to be very concerning...and it was. She has had a runny nose for a couple days and her voice started getting hoarse. On Friday she woke from her nap and was just plain cranky. She was crying and it seemed like she was in a lot of pain. I checked her temperature...normal. I listened to her lungs...normal. I checked her pulse ox...normal (82). I gave her some tylenol and tried to give her a bottle of Pedisure. She just wasn't having it or anything else. I walked my house for about an hour hoping it would calm her down. Her cry was really hoarse and it scared me. I thought she might have strep throat. By this time it was after 5pm and the doctor's office was closed. So I waited until Jerry got home from work and off Hope and I went to our first ER visit.

Now...our local hospital is affiliated with The Cleveland Clinic, so I was happy and knew they would take good care of us. We got through check-in (I'm sure that's not what it is really called) and back to a room in a few minutes. The doctor came in immediately and checked Hope over. By this time she had eaten 6 Ritz crackers, 1/2 a bottle, and an entire popsicle (they give those out at the hospital). She was happy, smiling, and back to her 'normal' self...of course! Her pulse ox was 83 and no temperature. We went through her symptoms and he checked her ears and her throat. He called her cardiologist to discuss everything and we were released less than 2 hours after we arrived with a diagnosis...COLD! No croup, no strep, no heart issues, just a cold. I am so happy and relieved and kind of feel silly for taking her, but I am glad I did. I am glad we met the nurses and doctors that were there so they know Hope and hopefully we won't have to see them again through the ER.

Now for the cool abstract that I found:

Congenit Heart Dis. 2010 Sep;5(5):476-481.
Successful Pregnancies in Two Women with Hypoplastic Left Heart Syndrome.

Opotowsky AR, Shellenberger D, Dharan V, ParÃ© E, Norwood WI, Webb GD, Donner R.

Department of Cardiology, Children's Hospital Boston, 300 Longwood Avenue, Bader 209, Boston, MA 02115, USA.

Abstract

Objective. â€‚ Hypoplastic left heart syndrome (HLHS) is a relatively common complex congenital heart defect. Prior to development of staged reconstruction (i.e., Norwood procedure), HLHS was almost universally fatal within months of birth. Early survivors of the Norwood procedure are now reaching reproductive age. We report successful pregnancies in two such women. Patients.â€‚ The first patient was a 20-year-old woman transferred from a community hospital at 33 3/7 weeks gestation because of preterm labor, suspected preeclampsia, and mild chronic hypoxemia. She had normal systemic ventricular shortening without significant valvar regurgitation but severe neoaortic dilatation. A fetal ultrasound demonstrated intrauterine growth restriction. An urgent Cesarean section was performed at 33 6/7 weeks gestation, given breech position and intractable preterm labor. The second patient, a 23-year-old woman followed at this institution through pregnancy, presented with preterm labor at 36 weeks gestation. Her systemic ventricular shortening was normal, with mild tricuspid regurgitation but without neoaortic dilation or regurgitation. She developed active labor at 36 3/6 weeks, and had a spontaneous vaginal delivery of a small for gestational age infant. Both women tolerated labor and childbirth without complication. Neither infant had evidence of structural heart disease on fetal echocardiography or physical examination. Conclusions.â€‚ These cases, the first reported successful pregnancies in mothers with HLHS, highlight the challenges of pregnancy among women with complex congenital heart disease in general and raise several considerations specific to HLHS.

PMID: 21087437 [PubMed - as supplied by publisher]

This is the best article a mom with a HLHS baby girl could ever read. This is with the medical technology of today...imagine when Hope is 20 and the advancements they will have made! The tears flowed so much when I read this article. Even if Hope doesn't want to have children of her own...there is still the possibility and I never knew it was even a possibility before...actually we were told it is/was not possible.

Let's Help

2010-11-15T11:10:00.000-05:00

Everyone who has read my blog knows that I am huge fan of The Children's Heart Foundation. They use all of the donations to benefit research for congenital heart defects.

Please...at this time of giving...sponsor Mike in his quest for the 50k race to benefit The Children's Heart Foundation. You can read Mike's story on his blog. He is amazing and spends much of his 'spare' time trying to raise awareness and money for congenital heart defects.

It is getting to Thanksgiving and Christmas and this is the season for giving. Please take the time to donate and support Mike in his quest!

Synagis and Updates

2010-11-09T22:08:00.000-05:00

She is totally cool!

Hope got her first synagis shot of the season today. I love that our insurance allows a home health nurse to come and give it to her at our house. It is so much better than having to go to the doctor's office to get the shot like so many other families. Hope has gained 2 ounces since the last time she was weighed. She is still under her 16 pound weight of before, but we'll take the 2 ounces. I have hope that she will get back some of the weight she lost and gain more. I have received a lot of great ideas and I thank everyone who gave me the ideas. I am trying most of the ideas I received and she seems to be happy eating. She will eat just about anything and it makes things so much easier. She doesn't eat a lot of anything, but at least she tries it.

You think this might be the cause of the weight loss? I know Rex sure hasn't lost any weight!

Now to catch up with some friends:
Logan is still in Boston and is on the roller coaster we have all seen happen way too often. His mom is not updating her blog, but I am following along on facebook. Please continue to keep all of them in your thoughts and prayers.

Please keep Mia and her family in your prayers. She had to go to the hospital with an infection. Hopefully it will be a really short stay.

Also, say a few prayers for Bowen. He has another infection which looks like it could keep him in the hospital longer. His parents would love for him to get home soon and I know he would love it as well.

I know I am missing some of my heart friends, so please just say a prayer for all of the babies, children, and their parents and families.

OK...Need High Calorie Food Ideas...REALLY BADLY

2010-11-02T10:43:00.000-04:00

Hope has managed to lose weight this month. Almost 1/2 a pound. She is back in the 15 pound range when she had hit 16 pounds already. I was totally amazed and very sad this morning when her home health nurse came. I really need some ideas. I am doing everything I can think of to get extra calories in her. I make oatmeal with milk instead of water. I put butter on just about everything. She is drinking Pediasure, although not as much as she was formula.

I am so afraid they are going to want to put an NG back in to get her to gain and I am totally opposed to that idea. She eats really well and loves food and I think that would be a step backwards.

HELP!!!

Halloween

2010-11-01T18:29:00.001-04:00

Last year this was the first 'holiday' Hope was home to celebrate. She was home to celebrate every single holiday...including each month (other than her 1st month) birthday at home with us. Here are some great pictures from Halloween this year.


You notice she loves her candy...especially lollipops. I can't keep them away from her.

All the trick or treaters. Amanda the Princess, Jerry as Iron Man, Dominic as Gangster Grandma, Hope as a Butterfly, and
Paul as a Frog.

They only lasted about 45 minutes because it was really cold and I think they were getting bored. I am happy about that...less candy means less time mommy has to say...no more candy today.

Looking Back

2010-10-28T09:22:00.001-04:00

This is Hope in her car seat on the day we left the hospital. She weighed 6 pounds and was 17 inches long. She still fit into newborn clothes and was fed through an NG tube.

I can't believe it was a year ago today that we brought Hope home for the first time. She was a little over 6 weeks old and had already stayed at two hospitals and had one open heart surgery. I was so scared to bring her home...especially on NG feeds. I hated the thought of having to change her NG tube, if and when she pulled it out. And she did pull it out. And I did put it back. And we did get her to eat well enough to take it out for good. The day we got to take her home was extremely long. I stayed the night to make sure I was able to take care of her on my own. I did everything for her and I loved it. I didn't get any sleep, but I was so awake all day. The doctors and nurses were convinced we were ready to go home...they just had a TON of paperwork to get through. Prescriptions had to be filled, car seat had to be tested, NG tube changed, and all the stuff she/we gathered during her stay had to be packed up and taken home. Boy did she have a lot of stuff. We brought things almost every day and her room was always decorated and cozy. It was the same when she got home. We finally left the hospital at almost 8pm and it was an hour drive. We still had to get the NG feed stuff set up at home and get her settled into her bed. It was a rough night, but one I will NEVER forget. It was the happiest day of my life and I am sure it was for the boys as well. Their mommy and sister would be there every day and night.

This is my little smiley girl today. She does move around a little on her horse. She weighs 16 pounds and is 28 inches. She has 4 teeth now and can eat just about anything...and does.

I can't believe how far we have come since that day. Hope is 10 inches longer and 10 pounds heavier...although you would never guess it with as small as she still is. She is still a little over 16 pounds and still wearing 6-9 month clothes. I am guessing she will be in them until sometime next year. It takes a long time for her to gain an ounce...let alone a pound. She is eating like crazy...anything and everything (and I mean everything). I have yet to find a food she does not like. She is still taking a bottle...only now it is
Pediasure. She likes to eat so much better than taking the bottle. We try and give her high calorie foods as much as possible. She is so active all the time that she uses all the calories she takes in. She is still not walking, but as soon as she feels comfortable enough to let go of the table or whatever she is holding...she will take off and not stop. I know the boys are looking forward to her walking and they try and 'help' as much as possible. She is also getting physical therapy and speech therapy. She babbles like crazy all the time and it is so darn cute. She loves to smile and it looks like she is going to bite you when she smiles. It's funny and I think she likes to make people laugh.

Of course she loves to be outside...and especially when she is playing with the boys!

We are so proud of our little girl. She has gone through so much and is doing so well. She is our hero!

Many Prayer Requests

2010-10-24T22:50:00.000-04:00

I will update on Hope later this week. I really want to send out a request to all my followers to send up some prayers for some heart warriors and their parents this week.

Logan is in Boston and will have his bi-directional Glenn on Tuesday. He and his family live about 10 miles away from me and yet we still have not met. I really wanted to meet them before he went for his Glenn, but it was a last-minute and emergent need to get him to Boston. Head over to his blog and let his parents know you are keeping him in your thoughts and prayers.

Dylan is another little man that is getting ready for his Glenn. I met his mom when Hope was in the hospital for her Glenn and he had just had his Norwood. Crystal does not have a blog, but Dylan is having his Glenn on Wednesday at the Cleveland Clinic Children's Hospital.

Adam is a little man that is now waiting for a heart. He has had a rough time and the stress of it all is taking its toll on his mommy. Her last post is really heartbreaking and I am hoping all my blog friends can head over and give her some kind words and prayers.

Please keep Bowen in your thoughts and prayers as well. It seems he suffered a stroke sometime in the last week and everyone is trying to figure out how. The doctors are also trying to figure out some blood sugar issues. Please send up some prayers for this little guy and his doctors.

These are my specific prayers. I know there are more babies, children, and adults out there that need your prayers. Please keep our heart warriors in your daily thoughts and prayers. And please don't forget the families of the heart angels...they need your thoughts and prayers too. Losing your child is something I never want to experience, but many of my fellow heart families have...please keep them in your thoughts and prayers.

Heaven Sent

2010-10-12T08:38:00.000-04:00

Last week was extremely hard. So much death and so many sick little kids just took its toll on me. It was a hard week and it culminated on Thursday with the memorial service for my grandma. She was 94 years young when she passed away and she had a great life. She was/is a wonderful woman and a great grandma. The service was heartwarming and actually kind of fun. Father Belzak told many stories of spending time with my grandma and the rest of the family and there were tears as well as laughs.

My mom stayed for the weekend, while Jerry and I and the kids made the trip home on Friday. We had to pick Destiny up for the weekend or we might have stayed another night. My mom came over last night and brought some stuff back from my grandma. The one present she brought back was a Christmas present my grandma bought. The only one she had bought. It was for Hope. I cried when my mom gave it to me and I cry every time I see it. I know it was sent from Heaven and it means so much to me that I can't put my words together very well.

It says "Heavenly angels, sent from above, keep you from harm, wrap you in love."

How could you not cry?

Very Sad Today

2010-10-05T13:42:00.000-04:00

Today I started the day grieving so many babies, children, and an adult CHDers that lost their battles. I was and am so heartbroken for these families. Then, I get a call from my mom. My grandma has not been doing well for the last week and we kind of knew that her time on earth was not long. Sadly, in the midst of all the grief for the heart families, my grandma passed away this morning. I am sad beyond belief. She is 95 years old and has led a great life. She taught me the love of travel. When I was young I used to look through all the magazines she kept on places she had been or planned to go. Exotic, foreign, and amazing places. I remember looking at pictures of all the places she visited. She would always bring us something special from everywhere she went. I have postcards, dolls, and treasures from all over the world. I knew when I grew up that I wanted to travel. And I did...and I will forever. My grandma taught me to live life to the fullest. She surely did! She loved so much and so many people. I miss my grandma. Even though she lived a long and full life...it is still hard.

Why?

2010-10-04T23:12:00.001-04:00

I know it is not up to us to ask why, but every single time a heart babies earns his/her wings I can't help but ask why. Why haven't we found a way to stop CHDs from happening? Why isn't there more awareness and funding for research? Why does this have to happen to these sweet little babies? Why????

I wish I had an answer. I wish I did not have to cry for another CHD baby...EVER! I wish I didn't have to worry every single day about Hope. I have become a better person and mom because of Hope, but I wish I had learned to become a better person and mom without having my daughter only have 1/2 a heart.

Please hold your babies and children tight tonight. Remember to hug them and kiss them and tell them you love them. Remember to pray for all the heart babies out there...and especially say a prayer for Ewan's family. They are strong, but prayers always help and give comfort. I can't imagine (and don't want to imagine) what they are going through right now. I worry about it in the back of my mind, but it is nothing compared to what they are dealing with today.

So many families this week...Angus, Jessica, Caleb, Ewan, Doug, Kaitlyn, Alexander, Tim....all gone far too soon. Please send up extra prayers for Doug and his family. I met them at the Clinic when Hope was there and they are a great family. Doug will be missed by many and my heart is breaking thinking about what they are going through.