Wednesday, February 23, 2011

Heart Blanket

Everyone has been sick at my house this past week so needless to say the blog got ignored a little. I don't have this weeks spotlight for you today but will get it up next week so stayed tuned.

Instead today I'd like to share a blanket with you. I wanted to make something for each of my kids as a memento of their brother. So I decided to make a fray blanket for each of them that incorporated the heart theme. My baby boys room is a jungle theme so I thought these material would be perfect.
Then I sketched out the pattern I wanted on paper before I started cutting material. I am very happy with how it turned out.
I let my girls pick out their own material but have not gotten to their blankets yet. And I also bought material to do one as a wall hanging to put at the top of our stairs with pictures of our heart angel.

Now I must say bon voyage! My hubby and I are leaving for a cruise tomorrow. Yay!!! And I won't be back until next week. But I will have a couple more heart posts to wrap up heart month when I get back. Have a happy weekend, I know I will!!!!

Wednesday, February 16, 2011

CHD Spotlight 3

This weeks spotlight is a true miracle. She is a little girl who defied all odds and surprised every last doctor. We spent most of our sons life together in the hospital with this sweetie and will forever be close to her family. Her story is written by her mom.

Elaina Jean Gomez-Lott

Elaina was born 5 weeks early, on January 11, 2008 by emergency c-section. At birth it was apparent that something was drastically wrong. She was transported to PCMC where she was diagnosed with Tetralogy of Fallot with pulmonary atresia, a VSD and coronary fistulas/sinusoids. She was later diagnosed with DiGeorge Syndrome.
Due to the unique anatomy with her heart, it was decided to forgo a traditional TET repair and instead do the 3 stage surgery similar to that done for HRHS/HLHS. She had a BT shunt when she was 14 days old and weighed 4lb 6oz. She did well after the surgery and was able to come home, but 2 weeks later was Life Flighted back to PCMC with RSV where she spent 3 weeks in the PICU. Finally she was able to come home again!
Two and a half weeks later she aspirated on a feeding and stopped breathing. She was once again Life Flighted to PCMC and spent 2 more weeks in the PICU. This time she was sent home with an NG tube for feedings and hopes that she would stay home until August when she would be having her Glenn. She also started having seizures caused by swelling in her brain from oxygen deprivation when she stopped breathing. Her time at home was once again brief. She was able to be with Mom on Mothers Day, and then she started having fevers and her pediatrician admitted her to PCMC for observation. Because of the respiratory problems she’d had over the winter months, we all thought that her increased oxygen needs were due to her sick lungs. She continued to have episodes of reflux aspiration, so her NG tube was moved to an NJ tube and she was placed on a continuous feed. She continued to decline and so an echo was performed and it was decided that her BT shunt had stenosed and she was in heart failure. She took a trip to the Cath Lab where they tried to balloon her VSD in order to allow additional blood flow, and buy her some time to get better before having her Glenn. This didn’t work and on her 5 month birthday she crashed and landed back in the PICU.
They had no choice but to do her Glenn the next day, even though she was sick and weak from all that she had been through. They also did a ventricular septostomy, creating one large left ventricle. The surgery didn’t go well, and over 8 hours later she came out of the OR with ECMO on standby.
She was on full ventilator settings, was hooked up to an oscillator and nitric oxide. She struggled for the next 6 days, and when Dr Hawkins went to close her chest, he didn’t like what he saw and she went back to the OR to have her Glenn redone. The surgeon also added a shunt from her aorta to her pulmonary arteries hoping to get more blood flow. They attempted to do an axial fistula procedure, but the veins and arteries in her arms were to small to allow the procedure to be successful. Once again she struggled for more that 8 hours in the OR and I wasn’t given much hope that she would pull through. The surgeon sat me down and told me that he had done everything he could, but that he didn’t know if she would even survive the night. Once again, ECMO was on standby. Four days later she was finally able to have her chest closed. She was still struggling, and was put on full ventilator settings along with nitric oxide. Her saturations did not improve much and after a very detailed echo, she had to go back to the Cath Lab for a coil occlusion to cut off blood flow to a collateral that had grown and was diverting blood from her heart and lungs. I was told that it was a long shot, and that if it was going to work, I would see the results within 24 hours. 72 hours later it seemed that this had failed, her saturations were in the 50’s and low 60’s on full support. The CICU/PICU doctors talked to me about removing her from all support and letting her go because there were no further interventions available for her. I just couldn’t do it, I felt that Elaina was still fighting and I would fight with her.
Very slowly over the next few days her saturations began to improve. Within 2 weeks she was able to be extubated. She stayed on c-pap for almost a week before being weaned to high flow oxygen. We stayed in the PICU for another 6 weeks. She slowly began to improve but I still wasn’t given much hope for her future. At that point she was on 3 liters of oxygen and her oxygen saturation levels were about 70-75%. I was told that she had severe pulmonary hypertension, caused in part by the long periods of time that she was on the heart/lung bypass machine during her 2 Glenn operations. The general concensus at that time, was that as her body continued to grow, her pulmonary arteries would not. I was told that she would get more and more cyanotic, until she was no longer able to support organ functions and she would pass away. The doctors thought that this would happen within no more than 3 months.
I was then given the option of taking her home on Hospice with a full DNR or sending her to South Davis Community Hospital with a partial DNR in the hopes that she would continue to improve. In October of 2008, after 143 days at PCMC, she was transferred to South Davis. Elaina is a fighter, and she has proved stronger than anyone could have thought possible.
She began to improve significantly, by Christmas she was down to one liter of oxygen with saturations of 75-80%. In February 2009, it was decided that she was strong enough to undergo surgery and she was able to have a g-tube placed along with a nissen fundoplication. She has continued to get stronger, and after 18 months at South Davis, Elaina was able to come HOME! She’s been home since April of 2010, and I’m loving it! She’s on oxygen (with sats of 85-90%!!!!), she has a feeding pump, but she’s not on Hospice! She still has her struggles, and Cardiology still doesn’t know what, if any, surgical options are available to her. When we saw Cardiology last summer, they told me that her heart function was in the normal range for her stage of repair, and that as long as she didn’t have an increased oxygen need, we could come back in 1 year!
It’s been 2 1/2 years now since her Glenn. I’ve gotten to celebrate 3 Christmas’s with her. I’ve been able to celebrate 3 birthdays. These are things I was told that I wouldn’t have. I am so grateful for Elaina. She is so strong and amazing. Because of her long hospitalizations, she has significant developmental delays, but she is a happy girl and is full of love. She still doesn’t eat anything orally, but she likes to drink water. She’s crawling and into everything, and I’m hoping that one day she’ll be able to walk.
She turned 3 in January and just started pre-school. Due to her immune issues, she is home schooled for the time being. She should be able to go to the classroom later this spring. She loves to watch Disney movies, her favorites are Cinderella, Monster’s Inc., Finding Nemo, Little Mermaid and Beauty and the Beast. She likes other movies as well, but those are her favorites and are guaranteed to make her giggle. She also loves to play with her toys and with her big brothers. She is almost always happy and smiling. She is a blessing to our family!


Monday, February 14, 2011

A Valentines Treat

I hope that everyone has had a wonderful Valentines Day. It has taken me all day to post this. Everyone in our house, except the baby, is sick. A great way to spend the holiday, right. And between taking care of sick kids and resting myself, I have not gotten to post before now.

I wanted to show you the fun Valentines treat we made this year. I found this idea at Disney Family Fun. They were very yummy and we will most definitely be making them more often.

Jam Tarts
2 1/4 c flour
3/4 t salt
2/3 c shortening
12 T water
Any flavor Jam
1 egg beaten with 1 t water

Mix flour and salt in a bowl. Use a fork or pastry cutter to cut in the shortening to pea sized clumps. Cut in water a couple of tablespoons at a time. (This is just a pie crust recipe, so if you have your own that you love use it.)

Roll out pie crust 1/8 inch thick on a floured surface. Use a cookie cutter to cut out cookies, you need two for each tart. We used a heart shape, but you could use any shape.
Place your cookies on a greased cookie sheet. Scoop some jam onto the center of the cookies. Make sure to leave space around the edges to seal your tart.
Brush the egg onto the edge of your cookies and place a second cookie on top. Press a fork around the edges. Bake at 400* for 15 min. Place on a rack to cool. After they have cooled decorate with frosting/sprinkles, whatever you want. We used frosting to make a cute quilt pattern.

Friday, February 11, 2011

Valentines Wreath

I have seen a lot of cute Valentines wreaths out there in blogland. But this week I found my favorite. Actually I didn't find it in blogland, but hey here it is now. My cousin (have I mentioned she's amazing) made this wreath for her door.

Cute huh! So can you guess what she made it out of......


She dyed the filters and made them into flowers using pearl straight pins for the centers. I absolutely love this wreath. And will be begging for lessons from her soon on how to make my own.

Oh so cute! I can't get over it!

Wednesday, February 9, 2011

CHD Spotlight 2

Todays spotlight is one that I am very touched by. We spent quite a bit of time together in the hospital and grew close to this family. They are wonderful people, who were blessed with an absolutely amazing little girl. Here is her story written by her family.

Mercydez Haws

We loved the name Mercedes. It’s just so beautiful and it flows so nicely. It’s also a name that has a royal sound to it; fitting for our little princess. But, we weren’t quite sure… maybe Maggie or Molly?

But, Mercedes kept coming back.

September 11, 2007 was the “Boy or Girl?” ultrasound. It was at this ultrasound that we learned our little girl would endure great trials while on this earth. It was a day of happiness, but also a day where many, many unknowns were put before us. Major Heart Defects were detected, along with a few other things.

After speaking with many, many different types of doctors, the only conclusion that was come to was no conclusion at all. No one had a diagnosis; no one had a plan; no one had any idea what this beautiful little girl had in mind.

We decided that, if Mercedes was the name we would choose from our list of names, we would spell it with “Mercy” in it. Why? Because, even before her birth, we felt she was a miracle sent by God, to us. We felt we had already learned a great deal from her. And, we felt it would be a great mercy, for all of us, for her to arrive on earth and spend any amount of time with us.
Our sweet little girl, Mercydez, was born late morning on January 3, 2008, at The University Hospital in Salt Lake City, Utah. She was immediately transferred to PCMC, to the NICU, where she stayed for four months. While in the hospital, Mercydez endured several surgeries and “procedures”. It seemed that these experiences only hindered her. Sometimes, for some of these precious children, medical intervention isn’t the right choice. It was a difficult lesson.

In April of 2008 we decided we would bring our precious little princess home, where she could be loved without the beeping, the poking, the prodding, and the hurt. We decided, through prayer, that future interventions on her behalf would no longer be an option.

May 1st came and our little Mercydez was discharged from PCMC. It was such an exciting and scary day! We couldn’t be happier to have our little Mercy with us, but we were also afraid of what would lie ahead.

Bringing our little girl home was the best decision we ever made! She proved the medical team wrong by living ten-and-a-half months longer than they gave her credit! She was able to enjoy meeting her cousins, being held and loved by all of them; she was able to attend family reunions, family pictures, singing and doing actions with her daddy; she was able to experience the 4th of July Parade in Provo; she was able to go on picnics, pet doggies, take warm, spa-like baths; have her fingernails painted; she wore sunglasses; she was able to go to county fairs; she was able to meet Santa and sit on his lap; she was able to help us start the tradition of sleeping under the Christmas Tree on Christmas Eve; she had a huge six-month birthday party at Jumpin’ Jacks… pizza, cake, ice cream, and presents all included! She was able to celebrate the new year with us; She had her first birthday with us; We had her for Thanksgiving and we were able to dress her up in a beautiful dress; we watched “Signing Time” together; read childrens books; enjoyed simple therapy games and toys together.

Bringing her home also brought illness and several scary times with it. It wasn’t all “fun and games”, but we believe with all our hearts that each experience was a tender mercy from a very loving Father in Heaven. Mercydez endured a great deal on this earth. While complex congential heart defects are what ultimately took her back to heaven, Mercydez was also a beautiful little girl with CHARGE Syndrome. She taught us that being different is beautiful and absolutely priceless.

Our beautiful daughter, Mercydez, returned home to Heaven on March 15th, 2009. While our experiences have been difficult, more than that, they have been a gift of happiness, of joy. We would never, ever trade our experiences with Mercy for anything. She is our greatest blessing and joy.

Children, no matter how long we have them on this earth, no matter what we do or don’t experience with them, no matter their challenges, are the greatest blessing. We learned this through our tender Mercy.

Monday, February 7, 2011

Heart Lunch

Instead of a recipe this week, I'm going to share with you a fun lunch idea to kick of the official CHD Awareness Week (Feb. 7-14).

A HEART shaped lunch!

Today for lunch we made grilled cheese sandwiches. Then I used a heart shaped sandwich cutter to make them into hearts. You could easily do this by hand too. Then I cut out some paper hearts and taped them to some straws. My kids love to use straws and they were ecstatic about having hearts on their straws.

Please help us spread awareness for CHD. For some statistics please visit The Childrens Heart Foundation.

Friday, February 4, 2011

National Wear Red Day

Today is National Wear Red Day to honor those with CHD and to help raise awareness. My oldest decided she wanted to help mommy remember baby Isaac and wear red today with me. So along with her red shirt, we also decided to give her a heart hair-do to match.

Okay, I know it's a little hard to tell, but the pink elastics make a heart. She was very excited to wear a heart in her hair to school today. I think with a little more practice we'll be able to get the heart to look a little better.

You could even try different shapes. My four year old asked if I could do a kitty. I don't think I'm that talented yet. But hey, maybe one day. What can you come up with?

Have a happy weekend!

Wednesday, February 2, 2011

CHD Spotlight 1

Welcome to my first CHD spotlight. I thought it only fitting to spotlight my own CHD hero as the first. I know I give a little rundown of his life on my CHD Awareness page, but I thought I'd give you all a little more detail about our world.

Isaac Paul Brimley

When we got pregnant with our third child, we both kind of knew it was going to be our Isaac. We had that name picked out since our first but had girls and never got to use it. So when we went to our 20 week ultrasound our minds were on confirming that he was a boy. And as the tech scanned sure enough, it's a boy! We knew it!!

But wait, why is she spending so much time looking at his heart? I'm no expert but that doesn't look quite right. Now she's going to talk to the doctor. Did that look right to you honey?

No, I couldn't make out four chambers. I could only see three.

The tech came back and told us they were going to refer us to perinatology. It may just be a positional thing, but we have to make sure. Perinatology said the heart didn't look right but we'd have to go have a fetal echo done by a pediatric cardiologist to get a definite.

The fetal echo confirmed that our baby only had three chambers in his heart. He was missing the most important one- the left ventricle. His condition was called Hypoplastic Left Heart Syndrome, or HLHS.

We were giving options for surgical procedures, transplant, just letting him die when he's born, and having an abortion. We opted to try doing a series of three surgeries (Norwood, Glenn, and Fontan) to replumb his heart.

Isaac was due Jan. 28, 2008 but decided to make an arrival 4 weeks early. This could be dangerous for his little heart. If he wasn't big enough, they couldn't do surgery. But when he came on Jan. 1, 2008, as the first baby of the new year at the University of Utah hospital, he weighed 6 lbs, 12 oz. Not the premature weight we were expecting, but a miracle.

There were a dozen doctors and nurses in the delivery room and the moment he came out, they cut the cord and passed him off to the NICU staff. I didn't even see his face.

The first time we saw him was when life flight brought him by my room in his incubator on his way to Primary Childrens Medical Center.

I didn't get to hold him until he was a day old, just before he had an emergency colostomy. They discovered Isaac had an inperforate anus, which meant he didn't have a bum hole. The colostomy it's self went great but after surgery Isaac had a hard time keeping his blood pressure up and because of all the fluid they had to give him just to keep him alive, he went from looking like this:

To this:

His lungs were very sick and he wouldn't be able to have the Norwood surgery as planned. They gave us the option to try a brand new surgery, the Hybrid. He would only be the third one they'd done it on. They hoped it would buy him time to get strong enough to have the Norwood. We just prayed he'd pull through and get strong enough for surgery. I changed my first diaper when he was a week old. I never knew how much changing a diaper could mean until I couldn't do it.

My husband finally got to hold our son for the first time when he was nine days old. He had the Hybrid surgery the next day and things went pretty well. But there was a lot to take in:

IV's on the left, Ventilator on the right, Chest tubes down in front, Tiny baby somewhere in the middle.
It took us three months to get Isaac strong enough to go home. We went home on April 3, 2008. We were very happy to have him home but it wasn't meant to be. He was only home for nine days before we ended up back in the ICU on a ventilator on April 12th.

Isaac got pretty strong during this time. We were able to have him out of bed and play with him a lot. They decided to try doing the Norwood and Glenn surgeries at the same time, something they had never done before. It didn't go well. There were some complications from the Hybrid that caused the Glenn portion to fail. They had to put it all back together. And a couple days later they went back in to try to fix the complications from the Hybrid. They were unsuccessful. There was nothing more they could do for him.

We started focusing on getting him home and having some good family time with him. Our girls were only 3 and 2 and we wanted them to be able to have memories of their brother. It was a hard battle for Isaac. He was a very sick boy. But within days of being able to bring him home, he threw up, aspirated it, and went into respiratory failure. He died in my arms, with his daddy's hand on his chest and his big sisters and grandparents close by.

The thing most people remember about Isaac were his amazing eyelashes!

We lost our sweet Isaac on July 26, 2008. We buried him on August 1, 2008. He would have been 7 months old that day.

Headstones are a funny thing. They hold different meaning for different people. For us it was a way to pay tribute to our sons life. And it was very important that we have a head stone that reflected this. It was a thing of healing for us, something grand we could do for him in a world where we couldn't do much for our son.

The following is the video of Isaac that we played at his funeral. It is pictures of his life set to a song written for him by the Songs of Love Foundation. Feel free to watch.


Tuesday, February 1, 2011

Heart Series

Did you notice something different about my header? Yes, this month I am doing my first series- a series all about hearts. And let me tell you why.

We all know that hearts are the symbol of Valentines Day. We use them to decorate and to tell people we love them. Hearts are used in so many fun ways to celebrate. But for heart mom's like me, Valentines Day carries a whole different meaning.

You see our children have broken hearts, literally. They were born with a Congenital Heart Defect (CHD) which means their hearts didn't form right and are not whole. So though we take the opportunity to use Valentines Day as a way of expressing our love to those around us, it is also a reminder of the burden our little ones must carry. And our minds are taken to the hearts our children carry and not so much to the hearts that act as symbols.

Because of this, every year, February 7-14 is CHD Awareness Week. It is a week where all those affected by CHD rally together to spread awareness of the #1 birth defect in the United States- CHD.

But I thought hey, why not do it for the whole month, not just for a week. So February is going to be a Month of Hearts!

All my post this month will be related to hearts (the real and the symbol). And every Wednesday for the whole month I will spotlight a CHD hero. I would also love to share any "heart" posts you may have. Just email me and lets all get involved.