Nayeli was diagnosed with severe Left Congential Diaphragmatic Hernia (LCDH) during her 18 week ultrasound, on June 4, 2008. We created this blog to keep family and friends updated, and to raise overall awareness of CDH.
During my pregnancy I always read this verse
Psalm 121:1-2 I lift up my eyes to the hills where does my help come from? My help comes from the LORD, the Maker of heaven and earth.
Grandma Dar arrived from Buffalo on June 22nd and is visiting for two weeks. My parents arrived on June 25th and left today. We have had a fun week. On Wednesday we took Nayeli to the Park with Grandma Dar. We went on a steam train. It was so much fun! Nayeli does the funniest look when she goes in a tunnel or a dark place. Her eyes get really big. On the 23rd we took Nayeli to where Shane and I work. My Sgt. got to meet Nayeli along with other coworkers. It was great showing her off. My parents and I took Nayeli to the Steam trains again and we also took her on a carousel. It was a great day! On Saturday the 27th we took Nayeli to Pier 39 to escape the heat wave. We showed Nayeli the sea lions and she loved watching them. She also enjoyed people watching. We went to eat the Rainforest Cafe and Nayeli was so interested in the fake elephants and Gorilla that are animated. We thought she would get scared she got a kick out of them.
Nayeli has been giving her daddy a hard time when it's his turn to put her to bed. We have a routine of either giving her a bath or massage and giving her a bottle or I breastfeed her. We hold her upright for a 1/2 hour to help her with her reflux. Nayeli gives Shane a hard time. She has cried to the point where she pukes on him. We think this is because I am home with Nayeli more than Shane is because he is working alot. We hope this gets better.
Nayeli got to meet her Godfather Alex before going to LA two weeks ago. Here are some pics of Alex holding Nayeli for the first time. The last time Alex saw Nayeli was when she was 2 weeks old in the NICU at UCSF. Nayeli really liked Alex holding her. I bought diapers that Nayeli can wear in the pool. When I opened the box I saw this cute little beach ball. I blew it up and gave it to Nayeli. She loves it and it has become her favorite toy. I lost it on our way back from LA last week so I will have to get her another one. She has a good grip and is starting to sit herself up when she falls back on the boppy pillow. Changing her diaper has become a challenge because she doesn't want to lay down.
We went down to L.A on Tuesday, June 16th for Shane's Police and Fire Olympic Games. Shane's team did well overall but got eliminated in the playoffs. Nayeli had fun watching her daddy on the ice. She giggled and screamed when she saw everyone skating. Shane is convinced she will be a hockey player I on the other hand see her figure ice skating. We shall see! We had a great time in L.A with our family and friends. We took Nayeli to the zoo on Friday. She loved looking at the people and enjoyed looking at children. She is smiling and being very talkative with people. We are so happy with her progress. She enjoyed seeing the giraffes and monkeys. There is an animal she did not like and got scared there is a picture of it on the video. We also took a picture of Nayeli when she was upset in seeing this animal. It does look kind of scary. On Saturday we decided to take her to the Getty Museum and she shocked us again with her appreciation for sculptures and art paintings. The Getty Museum is very big so we will have to go back.
Nayeli did so many new things on this trip. Nana Victoria taught Nayeli to clap with both hands with a spanish song that goes like this Tortillitas para Mama Toritillitas para Papa. Very cute! Nayeli loves it! She is sitting up on her own for longer periods. We still put pillows behind her just in case. Two weeks ago she fell back and hit her head on the carpet upstairs. I freaked out! She was ok but the nurse told me that will be one of many to come. Nayeli's top front left tooth started peeking out on Thursday. Her right top tooth came out on Saturday. She is drooling and is trying to chew on everything including my hair, ear and shoulder. I tried freezing a wash cloth that Carter's mommy suggested. Nayeli loves it, it's working!
We finally received our pictures from Nayeli's photo shoot when she was 2 months old. We took a while in ordering them. We had to use someone else Karen from Moment by moment wasn't available for that shoot. Here are some of her 2 month old pictures. We are so happy to have had Karen from Moment by Moment take Nayeli's 7 month photo shoot. I put them in a slide presentation. She took alot of pictures. We are so happy how she captured Nayeli on camera. Shane and I got teary eyed when we saw the pictures. Karen took photos of me while I was still pregnant and did it at no charge.
Karen started Moment by Moment in 2005 a non profit 501 (c) organization to take complimentary photos of children with life limiting diagnosis. We were going to have Karen take photos of Nayeli while she was at UCSF when we didn't know what was going to be the outcome. Karen offered to take photos of Nayeli when she was out of the hospital. Thank you Karen for doing what you do. Please visit her website to see the wonderful work her organization does. www.momentbymoment.org
Sunday we went to Church and Nayeli stayed up the entire service and still had energy to say hi to Pastor John and Pastor Chris. She is becoming more social and is having a great time meeting everyone and loves to people watch. After Church Shane and I decided to go to lunch. Nayeli really enjoys being out with us. She had a great time. We forgot her booster seat and were afraid to put her in one of the restaurant boosters so we had her stay in her stroller until she was done eating.
On Monday I decided to take the jogging stroller out for a test drive. Shane and I went to this nice park near us. Nayeli enjoyed watching the ducks. The last time she saw ducks for the first time she started to cry. This time she was happy to see them. A few ducks got very close. I am so glad Nayeli liked the jogging stroller, this means I will be getting back into shape.
On Tuesday I took Nayeli grocery shopping to Trader Joes with me. Everyone in the store wanted to touch her. I have a sign that says "wash your hands before you touch mine". I guess everyone ignores the sign and still wants to touch her. Shane and I wonder if we are ever going ot stop being paranoid about people touching her. Nayeli did great grocery shopping. She loves to shop no matter where we are. I bought organic frozen carrots, sweet peas and green beans. Cadenne's mommy gave me this great book with recipes. I can't wait to use it. Carter's mommy and Owain's mommy also have given me some tips on how to cook some yummy stuff. It will be better and cheaper to do. So we will give it a try.
Today Nayeli and I met with her Godmommy Harris for lunch. Thank you for the nice gift, we had a great time. Nayeli had fun people watching and was very talkative. It was the first time that I have taken her out to a restaurant without Shane. It felt pretty good being able to know I can do it. Nayeli and I are enjoyed our girlie time.
Two days ago Nayeli sat up unsupported for a total of ten minutes. Yesterday she did the same. She is still wobbly but is so happy to sit up. She loves her indpendence that she gets upset if we try to put her in her bouncy seat. The other day during her bath Nayeli didn't want to lay down anymore. She pulled herself up by grasping on to the edges of the tub and held on during her bath. She is so strong. It is a challenge to give her a bath when you have a slippery baby who is wobbly. It almost feels like basting a slippery turkey. We noticed that when Nayeli's Reglan starts getting low she tends to puke alot more. She was doing it a few times daily until we got the new bottle. She still pukes but not as much. Nayeli is starting to have a bigger appetitie. When she wakes up I breastfeed her and she latches on for a good 15 minutes. I am so happy! I never thought that this would happen. She is starting to boycott the bottle and want to breastfeed instead. I went shopping for nursing shirts and found alot of cute ones. I was so used to just nursing her at home I never thought of how complicated it can be when we are out. So far she is doing fine when we are out. She gets distracted and sometimes bites me out of frustration when we are out. We are feeding solids twice a day and it's going well. Her poops are getting bigger and smell alot stronger. Shane and I are so proud of her poops.
We had a photo shoot Karen today. Karen who took pictures of us while I was still pregnant. She runs a non profit organization called "Moment by Moment" please take a moment and visit her website. The link is on the right handside. Her foundation does great things. Karen took wonderful pictures of the three of us along with Twinkie and Molly. This morning Nayeli woke us up at 4am, 5am, 6am and then 7am. I have a feeling Shane and I are going to look tired in the pictures. We had a fun time taking pictures. Thank you so much Karen for a memorable time! I will post the pictures as soon we get them back. My shoe is tasty! Mommy holding me up so I don't puke.
June 4, 2008 forever changed our lives. We were so excited to go to our Ultrasound appointment. We were told that this would be the day we would know if we were having a boy or a girl. I met with Shane at the hospital after work. I was nervous and had a weird feeling something was wrong all day. The songographer started the ultrasound and was very chatty with us. She never made us feel like there was anything wrong. Shane and I did notice she did focus on the chest alot. We told her we didn't want to know if it was a boy or girl. We asked her to write it down on a piece of paper for us to take with us to dinner to celebrate when we opened it. The Doctor came in and was very serious. She looked at me and said there is something wrong with our baby. I froze, looked at Shane, and tears started to come down my face. The Dr. then said she needed to take a closer look and would answer any questions after she was done. I asked if it was serious, the Dr. respomded yes. I lost it! I couldn't stop crying. Shane and I held hands as the Dr. was taking a second look. Then the Doctor told us our baby has Congenital Diaphragmatic Hernia. Shane and I looked at each other and were puzzled, what is that? The Docotor just kept saying liver up. We were clueless about CDH. The Doctor walked out to give us a minute alone. Shane and I held each other tight and cried. We then decided to look at the piece of paper the songrapher gave us. We found out we were having a girl. We had a amnio done that same day to make sure ther were no other abnormalities. I was scared the entire time I almost passed out when I saw the needle go into my tummy.
Shane and I drove home in seperate cars. I prayed the entire way home and couldn't stop crying. Shane and I didn't have any idea of what we were up against. Shane went on the internet to research CDH while I sat on the couch crying my eyes out with Twinkie and Molly next to me. Shane and I couldn't go to work so we both stayed home for two days. Shane searched on the internet non stop for CDH information. While I just cried and prayed. I never asked why me? Instead I said God please help us. All of the information we were getting on the internet was making us feel hopeless. We finally came across Breath of Hope and Cherubs, these two websites helped us so much. Everyone on their were so helpful and we will forever be grateful. We started finding blogs that we got hope from: Claire, Ava and Cadenne. I will always remember these three because I was glued to them for comfort. Now it's our turn to do the same for someone else. We have a miracle that God gave us and we thank God everyday. Not a day goes by that we don't thank God for our precious little girl. When she is happy we laugh, when she is upset we comfort her and when she cries we hold her tight and love her. We will never forget June 4, 2008 and how it changed our lives forever. We have a circle of CDH families that were once strangers and now feel very close to and have supported us along the way. We thank all of our friends and family for continued support. We had the strength to get through this because of you. We are forever grateful and love you.
We have all the CDH babies fighting the battle in our prayers and those families who are finding out that their baby is diagnosed with Congenital Diaphragmtic Hernia. We also have special prayers to all the mommy and daddy's who have lost their precious little one to CDH. We think of your little angels every night.
This song touched me in a way that I will never forget when I found out Nayeli was diagnosed with CDH. It reminds me to Praise God in good times and bad. I found this video and thought I would share it.
Shane and I got married on May 27, 2006. We live in SF Bay in California. Shane is a Police Officer and I am an Animal Control Officer for the same Police Department. We have two dogs Twinkie(chihuahua mix) and Molly (dachshund) and a tabby cat named Max. We found out our baby girl Nayeli was diagnosed with LCDH on June 4, 2008. We were expecting Nayeli on November 2nd.
Nayeli was born October 22,2008.
We have had great support from other CDH families and through other CDH links below.
A congenital diaphragmatic hernia (commonly known as CDH) is an opening in the diaphragm (The dome-shaped muscle that seperates the chest cavity from the abdomen.) The hole allows the abdominal organs to push into the chest cavity. CDH is a life-threatening birth defect because it limits the growth of the lungs.
CDH occurs in every 1-2000 live births in the United States. Approximately 1,800 babies are born each year with CDH. Approximately 50% of all babies born with CDH die. CDH happens just as often as Spina Bifida and Cystic Fibrosis yet many have never heard of CDH.
*5 Adults 
