Several Things!

On this last day of February (which has gone by WAY too fast) I would like to tell you about 2 more things heart related.

When Lorelei was first in the hospital we were lucky enough to be the first to receive and Annabelle Basket. Annabelle was a heart baby that has gone home to be with Him. She was a beautiful baby girl that had HLHS and her momma, Rebecca, started this ministry in her honor. Lorelei received some too cute socks, a beautiful blanket, a bunny rabbit and a rattle. The nurses in PCICU helped pick out the perfect basket for her. Annabelle Baskets are a wonderful gift, and if you would like to donate to her please click on the link!

Another thing I want to tell you about are the Heart Walks put on by the American Heart Association. There is one here in Columbia on Saturday March 27 and there is one in Charleston on Saturday September 25. We won't be attending the one in Columbia since I have to work but the one in Charleston is where we get together with other families in Palmetto Hearts. Its wonderful! We weren't able to go last year because Lo was released from the hospital the day before and we just wanted to get home. You can go to the American Heart Association website and look to find your local heart walk!

One last thing, Lo's heart buddy Zeb is having surgery on Tuesday, which is his birthday. He will be having the Ross Procedure. Please pray for him, his family, the doctors, nurses and staff that will be taking care of him. He will be 3 on Tuesday so please remember this birthday boy in your prayers!

I have some pics that I will try to post on here later today!
Have a great weekend, we will be trying to do some spring cleaning!

Guess What?

We got a "See you in 6 months!" This is so exciting for us, the first time in almost 2 years that Dr. Shuler has said this to us! Lorelei did excellent during the ECHO, didn't fuss at all. (Thank you bottle.) So here are the points that came out of the appointment:

• There is still a narrowing below her aortic valve, Dr. Shuler is not sure whether its the tissue growing back or its part of her VSD patch. If it is part of the patch then it should grow with her.
  
• Her pressures are in the lower 40s as opposed to the last time it being in the mid 30s but he doesn't seem worried about that.
• The reason that the tissue might grow back is because when they are as little as she was for her second surgery they can't be as aggressive as they would be if she was bigger.
• Her valve seems to be growing.
• IF she would need another surgery down the line she probably wouldn't need valve replacement, just to 'carve' the tissue out again.

I am very happy to have a good report but also hate that others are not getting those good reports. I pray for all of the heart babies and kids every day. Thank you for all of your prayers! So now Lorelei can just be a toddler and run and play and have fun. Our next appointment is in August, wow last's a long time away!

Going to the Cardiologist

Today at 10am we go to see Dr. Shuler. Lo will probably have an ECHO done since she hasn't had one since we left MUSC in Sept. I am hoping it all goes well! I am bringing provisions (bottle, sippy cup, suckers, Mickey and Minnie, Lovie, blankie and books). I hope it all helps! I will update this when we get home!

Palmetto Hearts

When John and I were down at MUSC waiting for them to tell us when Lorelei was going to have surgery the first time we were introduced to a group called Palmetto Hearts. They are a support group for families whose children have CHDs. There are also adult CHD survivors that have joined us as well! It is awesome. We have met some GREAT families and try to interact with them as much as we can.

Lorelei has met many heart friends through this group! We are so grateful for them and all they do. John and I have helped them organize a Golf Tournament that will be in its 3rd year this year. We are also trying to get some fundraising ideas like some totes and bracelets going. If anyone has any other ideas or anything else they would like to see Palmetto Hearts on please let us know!

Again, we love this group and all that it does for our families!

Happy Valentine's Day!

Today will be a great day with my family, even though John has to work. When he gets home we will have lasagna for dinner, YUM!

I tried to make heart shaped cookies for V-day BUT I couldn't roll out the dough because it was too sticky so I made drop sugar cookies and tried to decorate them. It so didn't work! I don't think I will make sugar cookies again! Oh well.

My wonderful husband got me a gift certificate to the spa here in Chapin for Valentine's so massage, here I come! Whoo Hoo!

HAPPY VALENTINE'S DAY!!!!!!!!!!!!!!!!!!!

Playing in the Snow

We took Lo outside this morning and the dog up the street, Lily, came down to play with Lola. Lorelei had a great time stomping the snow and watching the dogs play.

Snow!

The snow started last night and Lorelei was so excited! I think she was excited because we were excited. After these pictures were taken John gave her a snow ball or 'now ball as she called it. She thought that was so cool! I love snow, even living in NY all my life I still loved the snow, just didn't like the cold. Ever since I was little, when it snowed I would go outside and just listen to it snow. There is nothing like that sound, very calming. I did that last night after Lorelei went to bed, just listened to the snow.

This morning when Lorelei woke up, I showed her the yard with the snow and do you know what she said? She said, "Oh NO!" It was hilarious!

MUSC/PCICU

I just wanted to blog about MUSC and PCICU. I have blogged about our journey and Lo's doctors so now its time for them! When we arrived in Charleston we went straight to MUSC and PCICU. PCICU stands for Pediatric Cardiology Intensive Care Unit. The nurses and staff there are the most wonderful people! They take care of the parents as well as the patient. In fact everyone at MUSC makes sure that the parents are ok too! They make sure you have a place to stay and if you need anything at all they will make sure to tell you where you can get it or get it for you themselves.

Here are a few of the things that Lorelei received while she was in PCICU:

The hat was made by a mom that was there before us and it was her first hat at MUSC. We walked in one morning and she had not 1 but 2 handmade little blankets, one knitted and one crocheted on her. It was so thoughtful! And lastly, the hairbow and green checked blanket came in her Annabelle Basket. She was the first to receive an Annabelle Basket.

When she moved up to 7C her nurses again made sure that we were ok and made sure we didn't need anything. There is also a book cart run by volunteers at a church (forgive me since I don't remember which church or what the organization is called) that comes by every Thursday. They gave Lorelei a book and I was so thankful! Again it was so nice of others to think about us and our child!

This is something she received in PCICU during her recovery of her second surgery:

It was good that she received this because she sleeps with her lovie and blankie which were with her at all times in the PCICU except when she threw up on them. It was nice that it was given to her because her lovie was being washed. When I read the card that came with it, I was excited. It was from a family that I met through Palmetto Hearts and she and I talk on Facebook. It was nice to actually meet them at the CHD Conference this past weekend!

All of these items will be kept in a special spot when she doesn't want them or play with them anymore. They hold a spot in my heart and I will cherish them forever. So why am I writing this post? Well, you see, I knit and sew, and I am going to try to knit some small Prayer Snugglies (my name for a small blanket that I pray over while I knit it, so it will comfort the one that it goes to) and also sew some small Cuddlies (small blankets I will sew out of minky fabric, if you don't know what that is, its the softest fabric!). Once I get them done I will take pictures and post them. I am hoping to get them done before September when we go down to Charleston for the Heart Walk. I also was wondering if any of my crafty, creative friends would also like to make some things to donate to the PCICU. It seems that there are a tremendous amount of babies going in to the PCICU and I would like them to get a loving treat from us!

For those children who are on 7C, we are still working on the BraveHEART Baskets and trying to get them to the children but it seems to have hit a road block. There are baskets there but not being handed out. We are in the process of remedying that so all the children will be able to get a little something while they are at the hospital!

If you would like to donate please contact me at jessaro77@yahoo.com and I will let you know where you can mail the package! Thanks so much!

My CHD Survivor

Update on Breakfast and the CHD Conference

Breakfast was awesome! We had a great turnout and we all really had fun! It was my first time EVER waitressing. I don't think I would want to do it for a job and I give props to those that do! They have to deal with A LOT! Thank you all for coming to breakfast I think we raised a good bit of money for research!

The Conference was so informative! It was nice to see people that we talk to only on facebook or by email. I learned a tremendous amount and it was nice of the cardiologists to come and be a part of it. I still have to go through my notes (yes I took a ton) and I will let you know what I gather up.

Thanks for reading this month! I still have plenty more to post about. Yesterday started CHD Awareness week and we have our shirts that we will be wearing! I'll take pics of Lo in hers and post it soon!

Heros

In my book, all heart moms are heros. They advocate for their child when they are newborns and continue to do so throughout their lives.

In Lorelei's life, I believe she has at least 3 heros.

1. Dr. Luke Bonnett, Chapin Pediatrics
He heard a murmur in her heart the morning after she was born and he decided that if it was still there the next morning he was going to get an ECHO just to make sure nothing was going on. Well, obviously, he still heard the murmur and we got an ECHO done. The ECHO showed her heart defect. I thank God everyday for this man since he heard the murmur and saved my child's life.

2. Dr. Osbourne Shuler, University Pediatrics Cardiology
He was on call the weekend that Lo was born and he came in to explain to us what her defect was and what was going to happen. I love the compassion he has for his patients and their parents. He always explains everything that is needed but also makes sure that you don't miss a thing in your child's life. I know that God sent him our way to be Lo's doctor.

3. Dr. Scott Bradley, MUSC Children's Hospital
Our daughter's surgeon that has saved her life twice! He is a great surgeon. He takes his time with his patients and makes sure that all is done well! I know that God works through him to save children!

Lorelei has other heros in her life like the nurses at Chapin Pediatrics (Karen, Candi, Tina and Tara), even though they give her shots :O), the nurses and ECHO techs at University Pediatrics Cardiology, even though she gives them a hard time EVERY time we are in there, and the nurses, occupational therapists, respitory therapists, fellows, child life specialists and anyone else who came in contact with Lo at MUSC. We thank you from the bottom of our hearts for taking care of Lorelei the way you do!

Our Heart Journey Thus Far

April 20, 2008

The nurses were trying to help me nurse, Lo wasn't latching on, we had visitors and then the phone call came from Dr. Bonnett. All I really remember about it is that he said there was a problem with her heart and the Pediatric Cardiologist would be coming to talk to us about it. The nurses came in and whisked her off to the NICU.

Those few hours after we met with Dr. Shuler before she was flown to MUSC were the longest ever. When John and I got up to see her in the NICU I wasn't prepared. She was fussy and had lines coming out of her bellybutton and we couldn't hold her. The flight crew had just gotten there and were getting ready to take her in her little incubator and fly her away. (I'm getting teary just writing this.)

That night I called down to the PCICU at MUSC and they told me she was fine. I could hardly sleep and couldn't wait to get out of the hospital. I broke free the next morning and John and I, my mom and her friend drove down to Charleston to see Lo. She was in her little bed and we couldn't do anything. She had IVs and lines and was swaddled. She wouldn't take a paci, only if it had sugar water on it. John's parents started driving down to SC that morning and got into Charleston at 10pm that night. John took them over to see her. It was sad that the first time they saw their granddaughter was in PCICU. They stayed with us that week while we waited for a surgery day.

April 24, 2008

Surgery day. We were able to hold her again before she went to surgery. It was so good to have her in my arms. Then I had to watch them wheel her away to surgery. Her anesthesiology nurse looked like Meredith Grey from Grey's Anatomy so I thought she was ok. :O)

She did well through surgery and moved up to 7C. We learned all about our new baby and how to feed, diaper, bath, etc. Finally May 1, we were able to come home.

We saw her pediatrician, and her cardiologist and saw her cardiologist every 3 months. She did well throughout the year. December was rough and we were in the hospital for RSV and then after Christmas she had the stomach bug.

June 2009

Dr. Shuler, her cardiologist, thought that she might need a sedated ECHO to check out the function of her heart. We went down to MUSC July 9 to have it done. They decided that she would have to have another surgery because her aortic valve was not growing very much and she had some extra tissue that needed to be cut out. We were worried that she would have to have something called the Ross Procedure but they didn't have to do that. The surgeon would have to go and cut out the extra tissue.

September 21, 2009

Lorelei's second surgery. My mom and John's parents were there again and again she came through just fine. We went in to see her the next day and she was still intubated but trying to wake up. She would cough with no sound and I had to leave the room at that point. It was terrible. Finally the extubated her and John's mom held her most of that day. She was very uncomfortable and I think we finally realized that she was cold. She spent the week in PCICU because there was no room available on 7C. We were discharged from PCICU that Friday, so all in all we spent 5 days there, much shorter then the first time.

She is continuing to do well and we will go to Dr. Shuler Feb 17 for her next appointment. They will still continue to monitor her valve and make sure the growth isn't growing back. If her valve doesn't grow or the tissue grows back she will probably have to have the Ross Procedure.

She still has night terrors and hasn't slept through the night since her surgery. We have tried really hard to just let her cry it out but sometimes its just heart wrenching. I am sure there will be more ups and downs with her heart but for right now we are looking up, but we are still praying for others that are awaiting surgery or might need surgery in the near future.

We didn't know that our child had a heart defect when she was born and there are many people that had the same thing happen but they went home and their children had to be brought back to the hospital before they knew what was going on. This is why we need to raise money for CHD research. If we could save one more family from having to go through this heartbreak, it would be worth it.

Tomorrow

I am very excited to blog about tomorrow's events. I probably won't blog until Sunday because I have to be at Fatz at 6:45am! Oh tiredness! Then I will come home to turn around and go to Columbia for the conference, so we probably won't be home until 6 at the earliest! LONG DAY!

Breakfast and CHD Conference

Tomorrow is going to be a big day! We are doing the breakfast at Fatz Cafe to raise money for CHD Research, tickets are still available and even if you don't get tickets you can still come out tomorrow! Then we are going to the first CHD Conference with our Palmetto Hearts pals! John and I are really looking forward to this!

By the way, in the new picture at the top, Lo is saying "Cheese" and yes she has a PAID sticker on her from Bi-Lo, even though she's not really paid off yet :O)!

Heart Buddies

Lorelei and Derrick. Lo giving D a hug. When he would get fussy, she would pat him like a dog to make him feel better. She tried people, she tried.











Lorelei telling D that he is a Dr. now.














She let him use her stethescope, since she knows that he knows how to use it.











Derrick is our friends' Justin and Shannon's little boy. He has HLHS, Dextrocardia, Transposition of the Great Arteries, VSD among other things. He just had his second surgery and is recovering well. Lorelei is still trying to get the concept of 'gentle'.

Prayers are needed for our friend Zeb. He is another Heart Buddy of Lo's that is going to have to have surgery ASAP. He is going to have to have the Ross Procedure, which is what Lo is going to have to have if her valve doesn't grow or the obstruction grows back. Please pray for his family as the knew it was a possibility but they weren't expecting it to be THIS fast!

Birthdays and Anniversaries for February!

John, Lorelei and I want to wish a very Happy Birthday to those who are having birthdays this month!
HAPPY BIRTHDAY to:
Beth Wilson (John's Aunt)
Jennifer Ford (John's Cousin)
Dylan Wilson (John's Cousin's son)
Rick Wilson (John's Uncle)
Scott Risher (John's Cousin's Husband)
Joe Wilson (John's Uncle)
Honey Socci (my Dad's Fiance)
Jenny Loysen (my Cousin)
Jewel Hanson (John's Cousin)
and
Asher DeMatteo (John's Cousin's son)

HAPPY ANNIVERSARY to:
Paul and Joan Wilson (John's Uncle and Aunt)
and
Tom and Jeanne Friedel (John's Parents) ~ Congratulations on 34 years of marriage!

Stay tuned because this month I am going to bring you through our Heart Journey so far (since it is National Heart Month) and highlighting places, people, events and websites that have helped us or joined us on our journey. I will introduce you to people and blogs that have become our friends and some that I just read about! I am excited to take you through this journey that has become our 'normal'.

Leaving you with some statistics that I took from the American Heart Association's website:

3,531 people in the United States died from congenital cardiovascular defects in 2005. At least 15 types of cardiovascular defects are recognized, with many additional anatomic variations.

• Thousands of babies are born each year with cardiovascular defects. Of these,
  • 4–10 percent have atrioventricular septal defects.
  • 8–11 percent have coarctation of the aorta.
  • 9–14 percent have tetralogy of Fallot.
  • 10–11 percent have transposition of the great arteries.
  • 14–16 percent have ventricular (ven-TRIK'u-ler) septal defects.
  • 4–8 percent have hypoplastic left heart syndrome.
• About 650,000 to 1,300,000 people in the United States with cardiovascular defects are alive today.
• 2006 death rates per 100,000 adults for congenital cardiovascular defects were 1.3 for white males, 1.7 for black males, 1.0 for white females and 1.3 for black females.
• Infant death rates (under 1 year) are 36.5 per 100,000 white infants and 52.5 per 100,000 black infants.
• From 1996 to 2006 death rates for congenital cardiovascular defects declined 33.3 percent, while the actual number of deaths declined 26.7 percent.

February

Along with Valentine's Day, the Super Bowl, the Daytona 500 and Mardi Gras/Fat Tuesday/Ash Wednesday do you know what else February is known for???

IT'S NATIONAL HEART MONTH!

February 5 is National Wear Red Day and February 7-14 is National Congenital Heart Defect Awareness Week!

This month we are going to be throwing a breakfast at Fatz Cafe in Irmo on Broad River Rd to help raise money for research! Email me at jessaro77@yahoo.com if you need tickets or just want to donate :O)

Also, John and I will be attending the first ever CHD Conference. We are so excited about hearing from great speakers and seeing people we haven't seen in a while! No kiddies allowed, so adult time it is!

I will leave you with this little fact, 1 in 85 children are born with some sort of heart defect!