CDH Reunion at UCSF

We were contacted by Barb at UCSF who asked us if our foundation would be interested in sponsoring the first ever CDH reunion. This was a no brainer, the Nayeli Faith Foundation was happy to help make this night a reality.

I was so excited to go to the first CDH reunion today at UCSF. I was sad that Shane and Nayeli couldn't go. As I was crossing the bay bridge I started to feel very emotional. A year ago Nayeli was fighting to stay alive. Not only was I thinking of that but all the times we had to cross the bridge to go to UCSF for our appoitments and not knowing what was going to happen to our little girl. I started to cry as I got closer to UCSF. All these emotions just started to come out. I walked in and I was so happy and teary eyed to see all these CDH miracles walking around. I really wish Nayeli could be there with me. The ages ranged from 5 months to 10 years of age. They are all ROCK STARS! I was so happy to see Dr. Farmer. She did Nayeli's repair surgery. Dr. Keller and Dr. Lee were also there and I was so happy to see them. I am sad I didn't get to speak with Dr. Harrison.

Dr. LeeDr. FarmerDr. KellerLast time I saw Collin was when he was in ICN and was less than one month old. Look at him now! He is 6 months old. What a cutie!

I spoke with other CDH families while I was there. Most of them are in the bay area. I was so happy to meet others near me. We exchanged phone numbers and emails. We were all so happy to meet. I hope that I can have them all over for a BBQ in the summer.

I met Luke who is 2 years old he was born with LCDH. He had a laproscopic surgery and is doing well. He is such an energetic little boy. So cute!Samara is 9 months she is so precious.
Emily is 9 years old and has had 3 rehernations. She was one of the first babies at UCSF to have a tracheal occlusion. She had her first repair surgery with pigskin, second was with gortex. She has lost hearing out of one ear and has 30% hearing out of the other. She is one strong little girl! Analisa is 10 years old. She is in the picture we all see when we go onto the UCSF website for CDH. I actually started to cry when I met her. I hugged her and thanked her for giving me hope while I was pregnant. All the CDH miracles!
Dr. Harrison is standing on the left hand side.

Happy 1st Birthday Nayeli Faith!

Little Yeli Bean you amaze us each day. We knew you were a fighter from the moment you were born. We heard you cry for one second then there was silence because they quickly put you on a ventilator. You showed everyone how strong you were when you decided to extubate yourself when you were six days old. We know that you like things done on your time. You show us that everyday.

You are changing and growing so fast. We love and cherish every moment of it. I thought when I went back to work I would be tired after working all day. I surprise myself, I always have energy for you. I love spending every minute with you. Your daddy and I have become friends with people that were once strangers now they are our closest friends. God tested and trusted in us a year ago with our faith. We prasied him through it all. Everyday you remind us how precious life is. You are a miracle!

As of your First Birthday you:

-are saying Mama, Dadda,book, Kitty, Shane, Hi, Mol(Molly), qak(quack),tery(teddy),Bir(bird)
-baby sign: doggie, book, wave bye bye, duck, milk
-are pulling yourself up and crusing. You crawl all around the house and get into everything your body fits in
-you hand us stuff you find
-climbing up stairs with our supervision
-have 7 teeth and one is peeking out today!
-wake up in the middle of the night, you are thirsty for BM and want to cuddle with mama you go back to sleep til 8am
-wake up in a good mood everyday and when you want us to come in you yell "Shane"
-love eating chicken, cheese, green beans pears and apple sauce
-love going into all the drawers and cabinets even though they are childproof.
-enjoy playing with the dog bowls. You tease Molly and Twinkine by putting your hand out and making them think you are giving them food.
-like pulling Max's tail.

We are so blessed to have you in our lives Nayeli. Thank you God for giving us Nayeli Faith. She is a living miracle and are grateful for you letting us be her mommy and daddy. Happy 1st Birthday Nayeli Faith!

He fills my life with good things.
Psalm 103:5

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Flu Shot X 3

We did it! On Thursday we went for our flu shot. Shane has gotten them before. It was Nayeli and my first time getting it. We decided not to give Nayeli the H1N1. It is such a new vaccine and there is not much research on it that it makes us uncomfortable. Nayeli is scheduled for her first RSV the first week of November. Her pediatrician told us she will continue to get the RSV shot until the age of 2.

Shane and I have been a little paranoid since we have noticed people at work are getting sick. We are praying we stay healthy. I carry a big gallon of antibacterial gel in my work truck and disinfect my work space. Shane does the same. If we touch something we wash or disinfect our hands with antibacterial gel. I will wear a mask and vapor rub if I need to.

My mom flew on the plane last week for the first time instead of driving. She wore her mask that the Doctor recommended and put vapor rub in her nose. We are so grateful we have my mom helping us out. We wish there was an easier way but for now this is what we have to do. Nayeli loves having Nana Victoria around. She drinks and eats great for her. She is still having Shane a hard time in eating.

We noticed since I went back to work that Nayeli is having a hard time going to sleep at night and breastdfeeding. The first week I went back to work Nayeli was refusing to take the bottle from my mom or Shane. She is now taking the bottle and this past week Nayeli is not breastfeeding at all and is taking the bottle. We are concerned since she is not taking the average 15oz to 24oz At bedtime Nayeli would immediately go to sleep at 830pm after breastfeeding or bottle feeding and after we would read her a book. Now she starts to cry a few minutes later. I go in breastfeed her and she goes to sleep. She wraps her arms around me and hugs me. I love this so I hold her a few minutes and rock her. I never want to let go. Two to three hours later she will wake up crying. I will go in soothe her but she won't stop. I will breastfeed her and change her diaper and she goes back to sleep. We used to be able to change her diaper before we would go to bed and check on her. Now it seems to wake her up. We hope that she sleeps through the night like she was or if this is her new habit then it's not such a bad one.

Molly had a birthday this past week she turned 13! We gave her a cupcake in celbrating. Twinkie was there to help. Happy Birthday Molly!
I love playing with dog bowls! Thank you Jen for my Bday present. I love it!I love Max's toy!
Thank you John for my birthday present.

We went to Baby Vincent's service today. Please keep the Serna family in your prayers.

I'm almost ONE!

We decided to have Nayeli's 1st Birthday party a few weeks early. So we chose last Saturday. We were almost going to cancel the party after we started to get phone calls from alot of our friends cancelling in coming because they were sick with the flu. Shane and I are so nervous about the FLU. We are going on lockdown starting this week. We made sure all of our guests knew that they couldn't come if they had the following: felt sick, have a cough, have a sore throat, fever, have been around anyone who is sick or has these symptoms. I guess I scared alot of our friends away. We had a great time with our friends that did come. It meant so much to us that they were there sharing this special day with us. We were really happy to see our favorite ICN nurse Kim. She drove a distance to be there with us. Nayeli really enjoyed being held by Kim. Part of the decorations included purell everywhere! Thanks to Carter's mom for that idea. We also had a dedication for Nayeli the same day. We had a small little ceremony with Nayeli's godparents. It was very touching.

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Moody on Monday, Happy on Wednesday

On Monday while I was at work Shane called me to tell me that Nayeli was being moody all day. She was giving daddy a hard time in eating all day. Shane had to change her from the outfit she was wearing because she deciced to wear her lunch instead of eating it. As soon as I got home from work she was so happy to see me. I feel so bad I can't hold her right away when I get home. I go straight to the shower. On Monday night Nayeli woke up at 11pm and wanted to breast feed then last night Nayeli decided to wake me up at 11pm and then 230am. I guess she misses me when I am at work she wants to cuddle and breast feed at night. I hope that this is not going to be a regular habbit. I am starting to get used to a routine on workdays. I feel a little rushed coming home but we are getting used to it. I am so happy when my parents are here. They are a big help. Nayeli loves when they are around. When it's time for bed she wants to continue playing with Grandma. I noticed that she is getting more energetic. She is crawling and cruising non stop. I hope I am able to keep up with her. I shouldn't be teaching her to climb up the stairs but she did such a great job we had to video tape it. We will have to get safety gates on the top stairs and bottom. She hasn't discovered them when she is crawling downstairs we watch her like a hawk. Here are some pics of today. Nayeli hates having her mouth cleaned after dinner. Full belly after dinner.
Start your engines!

Stair Master

Lap Dog

Twinkie loves laying on laps. Here he is trying to lay on Nayeli's lap. Nayeli thinks it's funny. Video of Nayeli trying to say Shane's name.

Angel Vincent

Vincent lost his battle with CDH this morning.

The doctors did all they could for him but his precious little heart and lungs couldn't fend off the CDH monster. Shane and I are so sad and in tears over this. I am mad that CDH has taken so many babies. This shouldn't be happening! Please Pray for Chelsea and Robert.