Tuesday, August 30, 2011

Newspaper Article and Congenital Heart Walk

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.

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.

Monday, August 15, 2011

Every Heart Has a Story - Take Two

Every Heart Has a Story

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!

Sunday, August 14, 2011

Fair Time

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!

Thursday, August 11, 2011


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.

Monday, August 1, 2011

Just call it a day of weight/wait

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.