Tuesday, December 29, 2009

Angel Averi Hope

We are very sad to find out that Averi has lost her four week battle against CDH last night. Please pray for Teresa and Kevin.

Saturday, December 26, 2009

Merry Little Christmas!

Last Saturday night Shane and I went to our work holiday party. It was the first time leaving Nayeli without BF her before she goes to bed. I left breast milk for my mom in a bottle. It was harder to leave her than I thought it would be. I was only five minutes away and I knew she was in good hands with my mom. I called a dozen times. My mom was so understanding and kept telling me everything was fine. The first person who asked me who Nayeli was with while we were at the party just about made me cry. I got better through the night. The next morning Shane and I went to church and had a breakfast date. It was really nice having time together.

I only worked two days this past week, it was great being home with Nayeli. It amazes me how much Nayeli learns so quickly. She is a little sponge soaking everything up. This past week she has learned: Baby Signs for- Frog, turtle, fish, shoe, hat, teddy(bear). New words- fish,bye. Her favorite words are still "book" and "hi." She is fascinated by books. She can't get enought of them. When she wakes up in the morning the first thing she points at is her books, while she says "book" and baby signs book at the same time. When she wants to watch TV she always does the baby sign for hat. I guess thats because of her baby sign DVD.

Nayeli didn't want to put this hat on for her Birthday and now she wants to wear it everyday. We had a nice quiet Christmas. It was just the three of us. Shane had to work Christmas eve which was hard, but got to be home for a rare Christmas day. Shane made us a great Christmas dinner, cooking prime rib for over three hours, basting it every 20 minutes, with herb potato wedges and a salad. We had strawberry shortcake cake for desert. It was the best dinner! We were so excited to see Nayeli open her presents on Christmas morning. She got great gifts from Grandma and Grandpa Leonard and the cutest outfit from Great Grandma Leonard. She received the cutest shirt from her boyfriend Carter and a gift certificate from her boyfriend John. Thank you all for the gifts! She had so much fun opening her presents. What cracked us up is that she was more interested in her diaper bag. Funny girl! She got lots of books which is her favorite! She likes to chew and read them. We are so thankful to be spending this Christmas together. We hope you all enjoyed your Christmas Day with your family and friends.

There are so many pictures that I wanted to post so I decided to make a video instead. This is a funny video because Nayeli is baby signing and I was trying to figure out what it was. She wasn't comfortable in the position she was in. She needed to release some gas and sat up did it and sat back down. She is one gassy funny girl! She makes me laugh everyday with the cutest things she does.

Monday, December 21, 2009

Angel Briana Emily

I am so sad to find out that another precioius baby has lost their battle against CDH. Briana fought so hard for 18 days. Please pray for her parents Angela and Jim and her 2 1/2 year sister Mackenzie.

Thursday, December 17, 2009

Where is your ear and belly?

We are so happy to announce our first ever Ice Hockey Charity Game for the Nayeli Faith Foundation. It will be on Saturday, December 26th, at 730pm at Logitech Ice, 1500 S. 10th St, San Jose, CA. We are selling tickets for $20 each, which includes entrance and 3 raffle tickets. The prizes are being donated by the San Jose Sharks Hockey Team and Hockey Xsport in Oakland. They are giving autographed pictures, autogrpahed hockey sticks, jerseys and a family pack deal to skate and have lunch at Logitech Ice, to mention a few items. We are so excited! We are sad that Nayeli won't be able to go. Our goal is to raise 2k, which is guaranteed for all intensive purposes because Shane's team (The Norcal Blue Meanies) has to rasie this amount for their upcoming SJ Sharks tourney at the end of January. We want to thank the San Jose PD Ice Hockey team for taking time out of their days to skate against in this game. The SJPD team has comitted to raising 1K from their team the the foundation. Anything more will be a pleasant bonus! Our goal for next year is to have more fundraisers, to inlcude at least two ice hockey games.

Max and Twinkie On a sad note our cat Max has not been feeling well. It all started last Saturday. We were looking all over for him in the house and couldn't find him. I finally looked under Nayeli's crib. He never goes in her room. He knows he is not allowed. So we knew something was wrong. We noticed him breathing rapidly towards the end of the night. We heard him wheezing so Shane took him to ER. They ran xrays and said he had some fluid build up around his chest, as well as scar tissue and fluid around his lungs. They told us that he could wait til Monday to be seen by regular vet. If he started to pant, then to bring him back. Shane took Maximus to see our regular vet. He is an awesome vet. If you are looking for one, his name is Franklin Utchen and he is at Bishop Ranch vet Center in San Ramon! He did major surgery on Max over 1 1/2 years ago. He did more xrays. He told us that Max has a heart problem (which he basically called heart failure) and the fluid around his chest is making matters worst. He started him on LASIX. He was on this before and so was Nayeli. We hope Lasix helps him like it did before. He is starting to eat and be more active. We are sad. Nayeli loves Max and says kitty each time he walks by. Shane talked to Dr Utchen a little bit ago, and was basically told that the days are, for a lack of better terms, now ticking because a cat, or human for that matter, with a heart problem, is bad no matter how you look at. We will continue to monitor him and see how things go, we just dont want him to be in pain or suffer.

Molly let Nayeli borrow her jacket. I can't believe she fits in it. Picnic at the Park
During dinner tonight Nayeli started to get a little moody. We usually have to distract her with a toy for her to eat the rest of her dinner. She kept extending her arms out towards the dinner table. We were trying to figure out what she was asking for. I gave her the empty container of yogurt and she was so happy when I did. There is a picture of a baby boy on it with his arm lifted up slightly. She put her two arms up and did the same motion and started to have a conversation with him. We hope we can have her have a playdate with one of our friends son soon. He doesn't go to day care, has had his flu and H1N1 so he is the perfect date for her LOL. She loves watching other kids. She has a learning video with children playing and singing she almost starts to cry when she sees the other children. She is so happy tears are coming out. I guess she is going to be sensitive like me.

We always tell Twinkie and Molly to get out of the kitchen when we sit down to eat and are feeding Nayeli. Tonight Nayeli helped us out by saying it too. She is so funny. I always thought that Nayeli was ignoring me when I am teaching her a new baby sign. Well tonight she proved me wrong. I showed her the baby sign for turtle twice today. When I was getting her ready for bed she looked at her book that had the turtle and did the baby sign for it and tried to say it.

The other night we were asking Nayeli where her ear, belly and nose are. We got is on video all except her nose. It's funny because she will stick her finger in her nose when we ask her. Her second molar came out yesterday. She doesn't seem to be bothered by it. She gets a little moody and chews on everything that is in front of her. I don't want to jinx this but I am sleeping better at night.

Please pray for baby Averi. She is on day seven of ECMO and her liver is bleeding. That can't be repaired until she is off of ECMO.

Friday, December 11, 2009

UCSF CDH Clinic and CDH Research

We went to UCSF yesterday and it seemed like a long appt. We met with Dr. Slovatenick she is doing the CDH research. She talked to us about the research they are doing at UCSF for genetics on CDH. She explained that she would take a swab sample from Nayeli and test her DNA for the gene that causes CDH. The most accurate testing would be blood but for now she is doing the swab. She is also going to test us for it. She mentioned that Nayeli is the most important one for the research. She told us since it is still under research we won't be guaranteed a 100% answer.
Waiting for her swab testing. Not happy with her swab testing
After we met with the CDH research Dr. the next thing appt was for Nayeli to get xrays taken before we head over to the CDH clinic. Nayeli was not happy having her xrays taken. I am glad she didn't have to go in the tube this time.

We first met with the nurse to get her weight, height and picture. The developmental person was next. She will have to see the the developmental person every time we come to the CDH clinic for the next 5 to 6 years. She placed toys out and asked us a bunch of questions. Nayeli was moody since she skipped her morning nap. She was happy once she saw the purple teddy. She immediately hugged it and didn't let go. She had a hard time giving it back. The developmentalist said she is doing great for her age and for us to keep up the good work. The purple teddy was her favorite!Next stop was the nutrionist. She told us Nayeli is at the 10-25% percentile for her weight. She weighs 19lbs 14oz. Her height is 30 1/4 and is 90% percentile. She went over what we are feeding her. She was impressed on what we feed her. She said she is getting concerend with Nayeli's weight and wants to see her gain more. She mentioned that I should mix my breast milk with the whole milk when feeding her the the whole milk. I had another CDH mom suggest that on our blog, Thank you! They told me I can continue breastfeeding as long as I want. Since Nayeli is being more active she is burning more calories faster because she is breathing alot harder than a normal baby her age would because of the size of her lungs. If Nayeli doesn't gain weight she wants us to start giving her pediasure and other foods. Nayeli has a great appetite and it puzzles us that she is skinny.
Nayeli is getting hungry from us talking about foodWe met with the Doctors and Surgeons. They told us that her xrays looked good. There is no sign of reherniation but to always know it can still happen. They told us they are concerned about her hiatel hernia and they are keeping on eye on it. What this does is her stomach is close to her diaphragm and causes reflux. I posted a picture of it so you get the idea. We hope she won't need surgery. The medicine is helping so she hasn't shown any signs of it bothering her at this point. They increased her doses of Reglan to .9 ml and Ritidine to 1.2 ml. We will go back to UCSF in 6 months for another checkup.
Nayeli being examined
During our visit I spoke with Dr. Slovatenick the CDH research Dr. and asked her how they get funded and she said it's very minimal. It's enough to cover her salary and some medical supplies. I also found out that the CDH clinic is not funded at all. We started the Nayeli Faith Foundation this past summer. A week ago we mailed in our application for the 501c3 so our foundation can become non profit. We have started to help CDH families at UCSF and we are also going to help the UCSF research and CDH clinic. We are so eager to start fundraising for all of this. We hope to get your support and prayers that we succeed with this.

It was great seeing another CDH family there that we have become friends with.

Nayeli received her RSV #2 at Kaiser today. She has become familiar with her RN. Whenever she sees her she starts to cry.
Nayeli hugging me tight Pictures from earlier this week
Daddy where is mommy? I want Mama!
Pleas pray for Averi Hope who was born with CDH almost two weeks ago. She has been placed on ECMO and is having her repair surgery. To read more about her you can go to her blog located on the right side.

Wednesday, December 2, 2009

1 going on 13

We are having a hard time moving Nayeli's bassinet out of our room. We just can't seem to depart wtih it. So it has become her storage area. She also likes to play with it alot. Here is picture of her last year and this year. She is growing up!

Last year! Now! Nayeli receieved her first H1N1 on Tuesday. I kept calling to see when they would have more in. Shane was turned away when he was there with Nayeli and then got a call when he arrived home that they were now giving it to people who only met the following critereia: pregnant, if you have an infant younger than 6 months, healthcare or emergency responders. Thank goodness for being an emergency responder. I called on Wednesday morning to make sure they still had some so I went on Wednesday morning and got it too. So we have all received the flu shot and H1N1. My mom is trying to get the H1N1 but is not able to because she doesn't meet the criteria. We hope they open it up to everyone so she can get it soon. We pray that we all continue to stay healthy this winter. We get so worried and paranoid when we see everyone around us at work sick. We also have to deal with sick people in our line of work.

During dinner on Tuesday night Nayeli was taking a sip from her sippy cup and accidently drank too fast. She started coughing and she then started to pat her back. We do that to her when she is coughing. She is too funny!

Her favorite word lately has been Hi. I love hearing her cute voice. She mumbles alot and I just act like I am having a conversation with her. We noticed her first molar coming in yesterday. She was very moody Wednesday and Thursday night. She hardly ate her dinner both nights. We wonder if her teething bothers her more in the evening because she is ok during the day. We gave her Tylenol both nights to help with the pain. She ate all of her dinner tonight and is back to her happy self.

If two is called terrible twos then one she be called independent. Nayeli is growing very independent lately. She gets moody if we try to help her with something or if we take away something. She sits and cries then throws herself on the floor and kicks her feet up in the air. The other thing she does is she will lay down flat and bury her face in the floor. We try not to laugh but she is quite the entertainer. We try to distract her with whatever we can but she goes back to whatever she wanted and keeps insisting on it. She is very persistent. We love it! She is warming us up for her teen years.

We noticed she likes to put on my shirts and any of my hair scrunchies or anything that is mine. She put on the Parker Reese tshirt all by herself. She figured out how to turn the TV on and off Nayeli loves Nana! She cries when Shane or I carry her away. Little helperRecharging her batteries! Nayeli doing the baby sign for dog