Facebook Updates

I started a Facebook Page

https://www.facebook.com/HopesNewHeart

I have been updating that a lot more regularly.

Please follow our journey there.  I will try to update this blog with the past few weeks, but for now I have been updating Facebook.

Updates

Hope today after getting her hair done.

I know I totally left everyone hanging.  I have been updating Facebook  during the last couple of weeks, but I have completely left out updating this blog.  I am going to give a brief timeline of events to catch everyone up and include some pictures as well.

July 25th - Hope is in the OR at 8:21 pm waiting for her new heart to arrive

July 26th - Hope's new heart arrives at 12:21 am

July 26th - We get to see Hope for a few minutes at 9:06 am.  They have not been able to regulate her blood pressure and we were told to go get some sleep.

July 26th - Hope coded and Dr. Stewart had to manually compress her heart for over an hour.  She was taken back to the OR at 10:39 am and she is definitely going to be on ECMO (life support).

July 26th - We finally get to see Hope again at 3:39 pm.  She is super swollen and on ECMO.  They are pretty sure her brain has been affected as she arrested for over an hour.

July 27th - Hope has continuous seizure activity.  Neurology tells us this is definitely a sign of moderate to severe brain damage.

July 27th - Hope starts dialysis to give her kidneys a rest.

July 28th - Community prayers begin at 9:00 pm EST.  They definitely work!!!

July 29th - Dr. Stewart cleans out her chest, puts in a pacer, and clamps off the ECMO cannula from her right atrium.

July 30th - Everyone feels like the heart is working perfectly.  They are still scaring us with head issues.  Mommy paints princesses toenails.

July 31st - ECMO settings continue to be lowered and Hope is holding her own without any issues. Hope also gets some cool new boots.

August 1st - Hope is off life support!

August 2nd - Hope is doing pretty good.  Still some blood pressure issues, but not bad.

August 3rd - Hope is extremely sensitive to stimulus so dad and mom are sleeping at home.

August 4th - Hope's chest is closed!

August 5th - Hope moves and is starting to wake up more often.  Pacer is turned off.

August 6th - Hope is waking up and opening her eyes.  She is able to move everything other than her left arm on command.

August 7th - Hope is stable and not much planned for the day.

August 8th - They are working on vent settings.

New Heart Prayers

Hope May Have A Heart

Dr. Stewart says preliminary reports are good.  We will know more about 2am then possible OR at 6am with transplant sometime later in the morning.  They will have to start trying to get through scar tissue before they even see the donor heart, so please pray that it is a perfect heart.

I know I am asking for a lot of prayers, but please say extra prayers for the donor family.  They are grieving a profound loss and through it have made the ultimate gift.  We will not know who they are unless they want to know our family, but I have been writing to them since the day Hope was listed.  I pray they will find peace in knowing their heart is beating in our beautiful daughter.  We will cherish this heart forever and pray for the family daily.

I will update as often as possible.  We will know more in the early morning hours, but nothing certain until later tomorrow.

Please continue to be in prayer.

100 Days

100 days ago I never thought we would still be waiting for a perfect heart.  I thought we would be one of the 'lucky' ones that got a heart right after Hope was listed.  We are still waiting for the perfect heart and will wait as long as it takes because we hope it will provide her a long and healthy life.  We know the sacrifice that needs to be made for Hope to get her perfect heart and are thankful that the donor family has been able to spend one more Easter, Mother's Day, Father's Day, and 4th of July with their little one.  Each holiday that passes is a blessing for that family and even though we would like to be home with our whole family, we are also glad that the donor family is getting precious time with their little one.

100 days ago I worried that Hope would spend her days aggravated and mad about being in the hospital so long.  Quite the opposite it true...Hope loves it here and has made friends with so many of the nurses, therapists, and volunteers.  She always has someone to play with and her doll house is her new toy of choice.  She spends most of her day talking someone (usually me) into playing doll house with her.  A Special Wish of Cleveland has done so much for Hope and our whole family.  They bring her toys, food, and play with her every week.  They are the best organization I have ever met and when Hope is feeling better, I plan to get more involved with them and raising money for other families to have the privilege of benefiting from  their generosity.

100 days ago I wondered who was going to watch the boys while we waited.  We have been so lucky that our families have gone out of their way to help.  This summer has been especially difficult and will get even more tricky as my mom starts working full time soon at the Cleveland Fairgrounds.  Jerry's mom has been staying at our house every other week and has been wonderful.  The boys love having her stay there and Destiny has enjoyed using her car this past week.  I love that she has been able to spend time with all the kids and that they aren't driving her totally crazy.

100 days have gone by and we have seen several of our heart friends come and go...several having their Fontan.  It has been amazing seeing these little ones thrive and get in and out of here within two weeks with no complications.  It was our 'plan' for this summer as well.  As disappointed as we are that our plans have changed, we know we are in a great place and we pray every day that the perfect heart comes and we celebrate at home with our whole family.

100 days ago there were two amazing boys waiting for their perfect hearts.  They received them within days of each other in April.  They are both home and enjoying the summer with their families and friends.  We have met other transplant families and have seen their little ones thriving as well.  I am amazed at how wonderful these kids are doing with their new hearts and it fills my heart to think that Hope will be one of them.

I try to keep things light and medically Hope is doing good.  She is medically stable in heart failure.  Her oxygen saturation is around 75-83.  She is on .5 mcg of Milrinone and 2 liters of oxygen.  She has had one little cold and no infections.  She has had a PICC line and NG tube replaced.  Otherwise...medically she is doing good.  I cannot begin to tell you how lucky we feel that she is doing so well.  We have seen so many different situations in the past 100 days and we know that this journey could be so different.

Please continue to keep our family in your thoughts and prayers.  We have felt them and appreciate them so much.

3 Months on the List

Today marks 3 months that Hope has been listed as a 1A for a new heart.  The days keep getting longer as we continue to wait.  The summer is passing and we are spending most days inside...which is hard for the whole family.  The boys are hanging out with their grandmas, aunts, and cousins (and their big sister too) and are having a great time. They have been enjoying their summer and have been spending time outside playing all the time. I am so happy they are able to enjoy the summer...even though I wish I could be enjoying it with them.  We have many years to enjoy time together and giving up the summer is a small price to pay...especially knowing that someone else will not have time to spend with their little one.

Hope had her PICC line changed the other day and another NG tube placed.  Both had been in about 3 months, so it is pretty good they both lasted that long.  When they brought her up to the recovery room, she threw up her brand new NG tube...which sucked.  It was 6:45 and her day nurse had to stay after and put in a new one (Bartok...you are an amazing nurse!)

My thoughts and prayers continue to be with her donor family.  I worry about them all the time.  We have lived with a heart defect and the knowledge that we might outlive our beautiful daughter.  I am guessing her donor family will not have lived with this and it will be a total shock.

Thank you all for thinking about our family and keeping us in your prayers.  They mean the world to us.

PICC Line Change and NG Change Too

Hope's PICC line decided to start leaking last night, so we got a dressing change at 6am this morning.  Definitely not something Hope or I wanted to wake up to this monring.  We had to move her Milrinone to a peripheral IV (which meant placement at 7am).  It has been a long morning and I am guessing the afternoon will be long as well.  She is now NPO (cannot eat or drink) until after her new PICC line is placed...which is scheduled around 1pm.  My little princess is taking this in stride and I am so proud of her.  Her dressing change yesterday and again this morning were not as traumatic as normal, so I am happy about that and hope it continues when she gets her new PICC line.  I am also having them change out her NG tube and put it in the other nostril while she is getting her new PICC line.  It clogged yesterday and I worry that it has been in so long it will just continue to clog...so a change will be good...especially when she is sedated and they can take an x-ray to make sure it is placed correctly.

I know this procedure is not complicated, but please keep Hope in your prayers for an easy procedure, hopefully using the same vein so we don't have to potentially blow out a different vein, and for an easy recovery this afternoon.  Please also pray for peace with her as she cannot have anything to eat or drink and I know she will be begging for something to drink soon.

Happy Father's Day

Happy Father's Day to the best husband and father!  Jerry is an amazing husband who goes out of his way to make sure our family has everything we need.  He works hard and long hours and rarely complains about his job.  He loves us all with his whole heart and we know we come first in his life.

Being a dad is more than a day

More than a thank-you or annual display

Your laughter and caring, adventure and humor

So giving, befitting the honor of father

I couldn’t have picked a better man

To travel through life with our crazy clan

You’re my husband, my hero, and may I suggest

A wonderful father — the best of the best!

Mommy's Birthday

I turn 45 years old today.  I am an older mommy and didn't start having kids until after I got my career off the ground and spent my 20s traveling and having a great time with friends.  I am so glad I waited, but I must say that if I had started earlier, I would probably have 12 kids.  I love my kids and even though they drive me crazy at times, I would still like to have had more.

Through my 45 years, there are few that have been as difficult as this year.  It has always been in the back of my mind that Hope could need a new heart...I just hadn't planned for it to be this soon.  I always anticipated her needing one in her 20s or 30s.  I am happy she is on the list and even though the waiting is hard, I wouldn't trade it for anything.

I am hoping my 45th year is a year of change.  I am going to stop smoking and Jerry and I have both come to agreement that we need to quit now and not wait any longer.  I am hoping it will not be as bad as I am expecting...I have a lot of tools that will hopefully help me become and remain successful.

3 Months in the Hospital

Hope and Dr. Boyle - he does her hair every day now!

Today marks 3 months that Hope has been in the hospital.  She has been on the list for 71 days...that seems a lot longer when I actually type it out.  This past couple of weeks have been really different and I think we are just getting impatient with the waiting.  I hate that we feel that way because we know that in order for Hope to receive a heart someone else will need to say goodbye to their little one.  Spending a lot of time in the hospital can try the patience of anyone and we have found ourselves getting edgy this week with each other and family.  This hospital stay has shown us how wonderful family and friends can be and we thank everyone that has come up and visited and helped us these last few months. Sadly, it has also shown us that even though we feel and live the seriousness of everything that is happening, everyone around us has their own issues and time that they need to spend that do not include us.  Our feelings have been hurt a lot and we need to figure out how to get through this and not hold our current feelings toward anyone once we get past the transplant.  It is hard, but we will get through and we will continue to lean on people that go out of their way to make sure we have everything we need...while sacrificing so much of their lives and the lives with their families and jobs.  The support we have received from family, friends, and complete strangers is overwhelming so I hope I have not taken that away from anyone...we appreciate everything everyone has done for our family.  We could NOT do this alone.

Please keep us in your prayers for peace, patience and as Hope is now telling everyone when they ask what they can get for her "a brand new heart".

2 Months on the List

Today marks 2 months that Hope has been waiting for her perfect new heart.  She has been in the hospital for 82 days and there are days that it feels much shorter and others that feel like it has been much longer.  We have moved into the 'penthouse suite' of M40.  It is a HUGE room with an adjoining bathroom.  It has a ton more open space than the other rooms we have been in and we are making it more and more like home every day.  I am hopeful that we won't get too comfortable in the room as we would like Hope to spend some time at home this summer...but we also know that waiting for the perfect heart can take some time.

We have met so many great families in our time at the hospital and I am always thrilled when they leave.  I hate to think of anyone else having to spend this much time at the hospital.  It is not easy and there are times when it is downright depressing.  Visitors are great and we love to have people stop in when they have appointments or are staying for a little while recovering (or for IV antibiotics).

We have also been so privileged to have so many great friends and family.  Hope has received so many great presents, cards, and prayers.  Thank you never seems enough for what everyone has done for our family.  Complete strangers (and A Special Wish Foundation) have shown us the true spirit of giving.  My heart is so full of gratitude and I wish there were better words to show our appreciation, but THANK YOU so much for your support.

Waiting

The waiting is a bittersweet experience.  It is long and provides a huge opportunity to think about life and all of the miracles and blessings we have experienced.  It is hard thinking about another family losing their child...it is unbearable actually.  It fills me with so much gratitude and love for the family...knowing that at the hardest time in their life they will think of others and donate their child's organs.  Without people willing to donate, Hope will eventually pass away.  She is stable right now, but there is always the probability that her heart will get worse and that more medical intervention will be needed.  There are still many options that allow us to wait for the perfect heart, but it is scary.

We are so blessed to have medical care so close to home.  I have met so many people while we have been waiting that travel so far for the excellent care at the Cleveland Clinic.  My friends and family are able to visit and so many do visit a lot.  We are so thankful for the great friends we have met and our families have provided so much for us.  I can't imagine how difficult it would be to travel across the country or world and be away from friends and family and wait for a life-saving operation.

I would love to thank everyone that has done so much for our family.  We are forever grateful for the food, presents, cards, and support we have received.  We are humbled by the outpouring of love for Hope and our whole family.  I wish I could express my thanks better because my heart is so full of gratitude and love for everyone.  You mean the world to our family!

Mother's Day

I wanted to share this poem from Stephanie Husted because nothing I can write today will be as eloquent as this poem:

This is for the Mothers...
(Each mother that I've known)
Whose greatest hope was someday
To have children of her own.
For the ones who proudly rocked their dolls
And kissed them each goodnight
This is for the Mothers
Who were told,"Something's not right."

This is for the mother
Who when faced with such a trial
Sits beside her child's bed
Just praying all the while.
For moms who learned of patience
In ways that no one should
For mothers who know firsthand
Life isn't always good.
When dreams of all the "oohs" and "ahhs"
As doting friends arrive
Become instead...a battle
To help their child thrive.

This is for the mothers
Who refuse to sit in silence
Advocating for their child
With constant love and guidance
Appointments fill their busy lives
It's time to go again
With feeding pumps, and specialists
A tank of oxygen.
As people stop...to take a look...
Just wondering...what's wrong?
I've seen that look, a hundred times
"You must be very strong".
The oohs and ahhs don't matter
Now life seems much more clear
I'm lucky I'm his mother....
I'm blessed to have him here.

This is for the mother
Whose shaking hands release
The child that she loves so much
(And then she prays for peace)
"We will take good care of him"
The nurse says carefully
This mother's thoughts are simple
"Lord bring him back to me.
His life no longer in her hands
She wonders what's in store
This is for the mother
Who has walked this road before.

This is for the mother
Whose worst fear comes to light
"We're still not certain what went wrong"
"We'll watch her through the night."
For mother's who sit powerless
Praying...please let her survive
For mother's who go on somehow
When their miracle doesn't arrive.
As some wake up on Mothers day
To kisses, cards and laughs
Others have just memories
and well worn photographs.

This is for the mothers
Who knows that it's a treasure
To have a child...love a child
There is no greater pleasure.
For runny eggs and blackened toast
Arranged upon a tray
With a bunch of wilted dandelions
"Mom does it taste okay?"
For every busy restaurant
And every crowded mall
The words...."I love you mama" are...
The greatest gift of all.

~Stephanie Husted

Goodbye for Now Grandpa

Today my grandpa passed away. He was a good man and had a great heart and a beautiful spirit.  I only have one grandparent left and I am sad. It is really hard knowing that my kids will not be able to grow up with my grandparents.  I love them all dearly and will miss my grandpa so much.

John Vernon Wiley, Sr.
Born in Toledo, OH on Nov. 30, 1919
Departed on May 8, 2014 and resided in Owensboro, KY.

Service: No Service

Cemetery: Toledo Memorial Gardens

John Vernon Wiley, Sr., 94, of Owensboro died Thursday, May 8, 2014, at Signature Healthcare at Hillcrest in Owensboro. He was born November 30, 1919 in Toledo, OH, the son of Ora May Yarrick and Steven Wiley. John married Marilyn Ann Post in Mobile, AL where he was stationed in the Navy during World War II. During the war, John was a pilot in the Navy where he was in the reorganized Torpedo Squadron Eight. He received his wings August 1, 1944. After the war, he stayed in the Naval Reserves. John returned to Ohio where he and Marilyn made their home in Adams Township, which is now part of Toledo. Upon moving to Adams Township, he drove a school bus, farmed, raised laying hens, sold eggs and worked as a propane serviceman. He retired from Cal-Gas in 1982. John was active in the community. He was elected to the Adams Township School Board where he served as president, was chairman of the Republican party of Adams Township and was a ward committeeman. John was a member of American Legion Post #553, and was on the Adams Township Volunteer Fire Department. The family was members of Epiphany Lutheran Church.  He and Marilyn had three children, John Junior of Owensboro; Anne (Jeffery Mitchell) of Middletown, OH and Ruth Wilson (Harold) of Owensboro. John and Marilyn bought a home on Lake Erie in Luna Pier, MI where he enjoyed his favorite pastimes of fishing and boating. Family and friends enjoyed the place at the lake and many of the grandchildren learned to fish and ski with Grandpa. Upon retirement, the couple bought a motor home and traveled the country, seeing lots of sights, meeting many new people and eventually leading them to Florida where they purchased a home. John and Marilyn then spend the summers in Luna Pier at the lake and the winters in Florida on Easy Street in Palmdale, FL. You could find him reading a good book, doing crossword puzzles or listening to the McNeil Lehrer report to keep him current with the politics of the nation and state. Family can remember his wise counsel especially reminding that "fresh air and exercise" are the ways to improve sickness and keep one healthy, which he practiced daily. John and Marilyn moved to Owensboro, KY after selling their lake home. Preceding him in death were his parents, and a sister, Janet Beidleman. In addition to his three children, John leaves six grandchildren, Elizabeth Eisenmann Thompson (Mike) of McGaheysville, VA, Phillip Eisenmann (Danielle) of Gilmanton, NH, Marilyn Amantea (John) of Brook Park, OH, Paula Wodzisz (Gerald) of Medina, OH, John Wiley, III of Cleveland, OH and Morgan Wiley of Owensboro; five step-grandchildren, Sheena Purcell (Pat) of Owensboro, and Kris Mitchell, Erin Waller (TJ), Adam Mitchell, and Sara Johnsen (Ryan) all of Ohio; eight great grandchildren, Michael and Annabelle Eisenmann, Dominic and Amanda Amantea, and Destiny, Jerry, Paul and Hope Wodzisz; eight step-great grandchildren, Candice Fenton, and Hannah and Kirstin Brown all of Owensboro and McKenna, Reagan and John Waller, and Lillianna Johnsen all of Ohio.

John will be buried in Toledo Memorial Gardens. A memorial service will be planned in Luna Pier, MI at a later date. James H. Davis Funeral Home & Crematory in Owensboro, KY is in charge of arrangements.

2 Months In Patient and 40 Days on the List

Hope has now been in patient for two months and on the list for 40 days.  I am surprised at how comfortable she is in the hospital.  I was expecting a really rough time when we were planning the Fontan for this summer.  I thought she would be scared, angry, and grumpy during the whole hospital stay.  At two months, she is doing so much better than I expected.  She is up and about, playing, making friends with lots of nurses, doctors, and various other people that stop by to visit.  She is still pretty shy around people she doesn't know or people that come in to talk to her.

Another surprise is my own attitude.  I was awful during prior hospital stays and hated every minute that we spent in the hospital.  Little things got on my nerves before and I would be grumpy most of the day.  This hospital stay is different for me too.  I know we are going to be here for a while, so I am making the best of the situation.  I am able to work in the room during the day and part of the night.  I take a few breaks from work to take Hope to the playroom...once in the morning and once in the evening.  I don't get mad about much at all and I appreciate everyone so much more than I did before.  The staff is awesome and tries to make life a lot easier and I appreciate all the little things they do for me.

I have learned so much in these last two months.  I have learned to lean on other people when I need help and a shoulder to cry on.  I have learned that people love to do things for other people...this is something I have done, but I didn't realize there were so many awesome people out there.  I am overwhelmed by the support we have received from family, friends, and strangers.  I don't think THANK YOU is enough for all the support, but know that our whole family THANKS YOU for everything!!!

Dr. Boyle (Hope's new doctor because she is in heart failure and waiting for a transplant) is in Italy this week for his wife's birthday...what a great guy!  We have been told many times that hearts seem to come available when Dr. Boyle is away.  I don't know how true this is, but I am hopeful that her new heart will arrive at the perfect time.  I am kind of hoping it will not become available until after Mother's Day.  I would like to think that the donor family will spend a great Mother's Day together.  I think about the donor family all the time and know that they will be making the most difficult decision of their lives.  I know it is a decision that cannot be easy to make and I hate knowing that another family will have to make this decision for Hope to live.  Please keep the donor family in your prayers as well.

One Month on the List

Hope has been on the transplant list for one month today.  Some days it feels longer and some days it seems like just yesterday she was at home.  We are so thankful for all the help and support we have received over the past couple of months.  Living at a hospital is not easy...especially when you have little ones still at home and a marriage to keep alive and well.  Jerry and I have been able to spend a few cherished nights out with the help and support of our family and A Special Wish Foundation.  It means the world to us to have so much help and support and I don't know what we would do without every single person that has called, texted, spent time with us, supplied awesome meals, helped with our kids, sent Hope wonderful presents and cards, and just kept us in your thoughts and prayers.  I don't know how to thank everyone because my heart is so full of gratitude for the thoughtfulness of others.

I wanted to share some other information with everyone as well.  The biggest questions I get is how long will we be in the hospital and when will Hope get her new heart.  These questions are impossible to answer.  There are so many factors involved in receiving a new heart and while Hope is at the top of the transplant list for her size...someone has to go through the unbelievably difficult time of losing their child and be willing to donate their organs.  It is something we think about so much...the grief this family will have to face in order for Hope to live.  It breaks our hearts all the time.  I started a letter to our donor family on the day Hope was listed and I have continued writing many other times.  I plan to give the letter to the hospital the day after Hope receives her heart and I will continue to write to this amazing family.  I don't know if they will ever read the letters or respond, but I really hope they someday want to know how much they have impacted our family with their ultimate gift of life.

As many of you that follow me on Facebook know Hope has been getting out of her room a lot.  We try and get her out and walking around as much as possible.  She is dressed every single day (thank you mom for supplying the endless sundresses as that is the only thing that works well with her PICC line).  She loves the playroom, fish tank, Ronald McDonald Family Room, Rooftop (we have to have a nurse with us that is certified in Pediatric Advanced Life Support with us when we go there), and the Lobby.  It takes some work to get her out of her room, but it is totally worth it.  She is getting the strength back in her legs and likes to be around other people (we do practically rub her down in sanitizer when we are out and when we get back).

If anyone would like to send a card, here is the address (she loves cards and we hang them all over her wall in her room):

Hope Wodzisz
Patient Mail M40-16
Cleveland Clinic Children's Hospital
9500 Euclid Avenue
Cleveland, OH 44195

Happy Easter

I have always loved Easter.  It has been about the Easter bunny, candy, food, and family.  We didn't grow up with strict religious views and faith is something I have relied upon through silent prayer and asking for forgiveness.  While we will not be attending church on Easter morning, we will pray and we will remember that Easter is the day Jesus rose after dying on the cross for our sins.  My kids will still get their Easter baskets, we will all eat way too much food, and we will spend the day with friends and family at the hospital.  This is the first holiday we have ever spent with Hope in the hospital.  4 and 1/2 years with a girl with 1/2 a heart and we have been so lucky.  We have friends that have spent most of their holidays in the hospital and I have always said a prayer for them to enjoy the holidays and remember their real meaning (sometimes not even remembering it myself).  I think about the families that will be celebrating without a special person in their life and pray they will find some joy in the day.  I think about some very close families that will be celebrating this holiday after losing their child...be it the first holiday without him/her or several years later. My heart breaks for those families most of all.  I will be praying for them and praying for the family that will make the ultimate gift of life to give Hope a chance to grow up.

Heart Buddies

The last few days have been a roller coaster of emotions for myself and several families that have spent a lot of time waiting for their gift of life.  I don't want to mention names because I don't know if the families would feel comfortable so I will use an initial for each of them.

W has been waiting for a heart for quite some time.  He waited at home for about a year and then was admitted to PICU to continue waiting.  He has been in since January.  A few days before we arrived, he went downhill pretty fast and had a Berlin Heart placed.  I think all these new devices are really cool and they do give kids more time to wait for their new hearts.  Yesterday I was talking to his parents and they were scared because he was not doing too well at all.  Hope and I have been praying for a heart for W for the whole time we have been at the Clinic.  I was so worried that I asked to be moved to Step Down because I know I would not be able to handle it if something were to happen to W.  This morning I went down to the Ronald McDonald family room and W's parents were there...looking happier than I have seen them in the whole time we have been there.  W got a heart last night!!!  It is amazing to me that he needed it so very bad and it was there.  I am so happy for him and his family and I pray like crazy that I can watch him grow up and run around and play with his brothers and sisters.  His parents are amazing and have been through so much.  Please keep all of them in your prayers as W makes a strong recovery and is out playing soon.

L has been waiting for a heart for a couple months as well.  He is a little older than most kids and didn't find out about his heart until he was 17.  He is a cute and fun young man and has been walking through the Clinic since he received his LVAD.  His mom is so sweet and tiny and the cutest lady you could ever meet.  I can't imagine how hard it would be to find out at 17 that you are in heart failure and I know his mom has been in shock since finding out.  After finding out this morning that W got his heart, I saw L's mom (we are now next to them in Step Down...we were next to W in PICU).  I had seen a post on Facebook, but I knew when I saw her face that they had received their miracle as well.  I am stunned at how fast things change and the whole atmosphere has been totally changed...overnight.

K is a cute little boy (Hope's boyfriend) that we have been through the Norwood and the Glenn with at the Clinic.  His parents are the best people you could ever meet.  Hope and K have been across the hall from each other during the Norwood and the Glenn and it was always my intention to have them get their Fontan done together as well.  You know what they say about best laid plans...Hope sure put a kink in my plans.  K had his Fontan last Wednesday and has done AMAZING!!!  He is in Step Down and Hope gets to watch him walk the halls and take lots of rides in the wagon.  Hope has been in the wagon too and hopefully we will be allowed to venture off the 4th floor sometime soon.

C is a little princess that has flown the coop (literally...she is now in Boston).  Her mom kept me company and spent lots of time playing with Hope in the PICU.  She decided to take C to Boston to get her heart repaired and I know they are all in good hands.  We love the Clinic and know they provide excellent care, but C is complex and Boston sees complex heart kids all the time.  I can't wait for C to come back and have a cool play date with Hope.

There are so many families that I have met and become close to during our stay.  I hope that as each of you pray for Hope that you will also say a pray for W, L, K, and C because they are all on the path to recovery and I know their families could always use the extra prayers.

Hope's Room

Just a glimpse into Hope's room in the ICU at the Cleveland Clinic.  She has received a lot of cards and notes from friends and family and we make sure we put them all up for her to see all day.  Hope also spends a lot of time doing her own artwork and has so much fun we have to put it up.

Thank you to everyone that has sent notes, well wishes, and prayers.  We appreciate them more than you can ever imagine.

If you would like to visit or send a card, here is the address:

Hope Wodzisz
M43-13
Cleveland Clinic Children's Hospital
9500 Euclid Ave
Cleveland, OH 44195

We may be moving to Step-Down again this week, but it is not a for sure thing yet.  She is slowly being weaned from the high flow oxygen and we have to wait until Dr. Boyle returns this coming week.  She will have a lot more wall space over there, so it will be fun to decorate.

Thank you again for the prayers...they work and are being felt!

One Month and 10 Days

Hope has now been at The Cleveland Clinic Children's Hospital for one month.  I reflect on this so much because prior to this admission, it had been years since she has spent any time in the hospital.  I think I took her health for granted because she had such an easy time and has done so well for so long.  I never would have thought it was possible for her to be in heart failure and needing a new heart at four years old.  We have always been told it was possible, but I always imagined it in the far future.

Hope is currently listed as a status 1A on the transplant list.  She has been on the list for 10 days and counting.  I have heard of people getting their new hearts in hours, days, weeks, months, and even over a year.  We really don't have any idea when the perfect heart will arrive, but we do know it will be bittersweet.  We have thought about the family that will be giving Hope a future...a family that will be living a nightmare that we are praying to avoid.  I cannot describe how thankful we are that a family, while going through a grief that is unimaginable, has selflessly donated their child's heart to live on in our daughter.  It is the kindest gift a person could ever give to someone else.

Our days are filled with games, stickers, painting, music, and lots of fun activities.  It is also filled with blood draws, stethoscopes, bandage changes, lead changes, blood pressure checks, medicine, and NG feeding.  It is filled with smiles, laughs, giggles, playing, and lots of love.  It is also filled with cries, de-sats, and rest.  The days pass...sometimes fast and sometimes slow.  They pass with prayers filled with blessings for the times we have spent as a family and the hope for many more times together as a family...at home with a new heart and a new journey.  It is scary and emotional and we rely on each other and our family and friends to help us through.

Please keep Hope in your thoughts and prayers and keep the family that will donate their child's heart in your prayers as well.  That family is not aware of what the future holds and I pray that they are spending their days enjoying their little one.

Hope's Medical Team

This post is going to be a lot harder because even though I see people every single day, I don't always remember their names.

Dr. Prieto - she has taken care of Hope since she was born.  She is very caring, but will definitely tell you how it is.

Dr. Preminger, Dr. Golden, and the rest of the Cardiologists at the Clinic have been there for my family and have been following her through our new journey.  We get a new one every week who is on call and we will eventually know all of them very well.

Dr. Stewart is an amazing surgeon and a wonderful person.  He has never operated on Hope, but he will be the one that gives her a new heart.  He has laughed and cried with me during this stay and I am forever grateful to him.

Dr. Boyle is now Hope's doctor.  He takes care of all the kids with heart failure and the ones that need a new heart.  He is the big reason Hope is on the list.

PICU Doctors - I don't know half of their names, but I truly thank them for keeping Hope comfortable and as healthy as possible.  They really listen to me and that makes all the difference in the world.

The Nurses - I wish I could list them all because we love so many of them.  Oksana is my favorite and I really think she loves our family as much as we love her.  Kristen, Adam, Allison, Kate, Travis, and so many others to list.  The nurses know Hope better than most of the doctors and are always there for our family if we need anything.

Big John - everyone knows he is the best blood draw around.

Christine (Music Therapy) - she does amazing things for Hope.  Whenever she is at the door, Hope's face lights up.

Meredith (Art Therapy) - she also makes Hope's face light up.  We have so much artwork on the walls and the room looks awesome.

Sarah (Child Life) - she always gets the call when they need to distract Hope.  She plays and helps so much.

The Volunteers are amazing.  Every day we get to take advantage of these wonderful caring people.  They not only come and play with Hope, but they relieve me for a little bit...usually so I can take a much needed shower.

There are so many other people that I need to thank and yet I can't remember their names.  We get so much support from everyone and feel like everyone is looking out for our whole family.