Nayeli was diagnosed with severe Left Congential Diaphragmatic Hernia (LCDH) during her 18 week ultrasound, on June 4, 2008. We have 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.
Last Sunday we had our pictures taken by Karen. She runs a foundation called Moment by Moment and she also has her own buisness Custom Moments. She is a wonderful photographer!
Karen always captures the best Nayeli moments. We are so happy to see and compare the pictures of her last photo shoot and how much she has grown. Twinkie and Molly can't be left out. They love taking pictures too!
Karen started Moment by Moment in 2005 a non profit 501 (c) organization to take complimentary photos of children with life limiting diagnosis. Karen took pictures of us while I was pregnant at no charge. 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. Thank you Karen for doing what you do. Please visit her website to see the wonderful work her organization does.
I am sitting here thinking about how I felt a year ago when we brought Nayeli home from the hospital after 23 days of being in the ICN. I was so scared that there wasn't a nurse nearby. I also thought I was dreaming. I didn't think that day would ever come. I was so scared I wasn't going to bring Nayeli home at all. I was afraid of coming home empty handed. My fears are realities for other CDH famiies. I am having a hard time knowing that other CDH families don't get to bring their babies home. I think of those babies and families every night. As I kiss Nayeli every night we say a prayer for all of them. It's great to see her do things everyday and then it also hurts that the babies that have lost their battle to CDH won't have their mommy's and daddy's kissing them goodnight. I feel lucky, and then also guilty. I know I shouldn't feel guilty but it's hard not to. I had a very hard time sorting my feelings over this but Shane convinced me to write them. I am probably not making much sense but I guess it's more for me to write it out.
We thank God for Nayeli everyday. Nayeli is such a blessing she is a miracle! Reflecting back on how we felt when we brought Nayeli home a year ago has me thinking back on how I felt. It was emotional and I will never forget.
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.
There is no place like home November 15, 2008Visiting Dr. Maier and his staff at OB/Gyn a year ago during Nayeli's first Pediatrician checkupA year later visiting Dr. Maier and his staff.
We introduced table food to Nayeli this week. I made beef stew and she loved it! While she was eating it I asked her if it was hot. She started to do the baby sign for hot and she was blowing. We also gave her Mac N Cheese later in the week. She gobbled it right up. She started to do the baby sign for all done. If we ignore it and continue to feed her she will then start to throw her food on the floor.
When I was putting Nayeli to sleep the other night, I started saying, "Shhh it's time for Mimi's." She started to say Shhhh back to me. I started to giggle so she started to laugh too. It was hard to keep a straight face at that point. She likes to copy everything I say. I will say lets put your shoes on. She will in return say "shoe." I asked her if she wanted to have cheese for lunch the other day. She said "cheese." She is soaking everything in like a sponge.
All done! Showing off her teeth Don't think about touching my Mac N Cheese We took her to get her first set of RSV shots today. Nayeli has come to know her nurse Ann very well. I guess it's because we just saw her two weeks ago for her One year shots. As soon as Ann entered the room Nayeli began to cry. We told Ann we were concerened about one of Nayeli's teeth. She went and got Dr. Hahn. Dr. Hahn said it could be a concern but not to worry about it right now and we should see a dentist to make sure there is nothing to be concerned about. They weighed Nayeli today and she gained 2oz from two weeks ago. She weighs 19lbs 8oz. I was hoping Ann wouldn't miss. That needle was way to close to meNayeli pointing at BOYS pictures on the wall.
I just read the sad news. Lewis Anthony Moore passed away. He fought so hard and lost his battle with CDH. Please keep his parents and family in your prayers.
If Nayeli wants something she will point at it for us to get for her. Or she will point at it to just because it grabs her attention. She has become independent while she is playing sometimes she ignores me. When she wants me to participate she lets me know. Her new fascniation is putting things in and out of containers and getting stuff out of cabinets and drawers. Now if I can only teach her to put it back. I can watch for a while when she takes a tupperware container and puts one of her small toys in and out for a while. It's fun to watch her do this because she is learning. If I close the container with her toy in it and she can't get it open, she gets upset and throws it to the side and yells. I bring the toy back and try to teach her to open it with me. She gets so excited and grabs the toy to try to do it herself.
I have always played the game, "where is the ball, book and teddy," with Nayeli. She didn't respond until earlier this week. I asked Nayeli, "where is your ball?" She grabbed it and showed it to me. I praised her. Then, I asked her, "where is your book?" She grabbed it and I praised her. I then asked her, "where is your teddy?" She grabbed her teddy and hugged it, and I praised her again. I tried this game again later and she didn't respond. I will try to get it on video when she does it again. We were on a role and I didn't have time to get it on video.
My belly button makes Nayeli giggle. Everytime she lifts my shirt up and touches my belly button I make a funny sound. She laughs and it's so funny. She is trying to do it to Shane and he does the funny sounds too.
Earlier this week Nayeli got up in a standing postion by holding her high chair. She was so happy she did it. She held on to the top of the high chair and then, out of nowhere, she freaked out. She didn't want to let go. I helped her let go and she was so happy to be crawling afer that. Nayeli loves doggie toys! We are planning on getting Nayeli her own lounge chair. She loves to sit on her bombo chair. Last night at dinner Nayeli wanted more crackers. She was getting frustrated that she didn't have anymore on her tray. I asked her in baby sign language if she wanted more crackers. She responded by doing the baby sign for more. I praised her and I gave her more crackers and she was so happy. She was clapping and doing the baby sign for more at the same time. As soon as her tray was empty again she did the baby sign for more. What a smart girl! I truly believe in the baby sign language. I hope it helps when she gets frustrated and she is trying to tell me something. Lately, she has developed a fascination in her nostrils. Daddy asks her to stop and warns her about the nail biting snail inside of her nose. She smiles, and immediately puts her finger back into her nose. She also likes to put her fingers in her ears. We are starting to realize how hard it is to correct bad habits. At this point, we know it is just a new discovery and we hope she grows out of it. We can just see her out at a restaurant knuckle deep in her nostrils! That will be a real crowd pleaser!
We seriously need a toy bin!Nayeli and her buddies! She is so gentle with Molly. We were out doing errands today. Nayeli started to get fussy because it was close to lunch. I didn't have her food with me and we were 5 minutes away from home. I decided to BF while she was in the car seat. I leaned over and guess what? She BF from me while we were driving. It was a funny sight to see. I was leaned over in a weird position while she is eating. I am glad Shane didn't have a video camera or the digital camera because he wanted to capture the moment so badly. I am sure we got some stares from passerbys.
Born October 22, 2008 at UCSF weighing 6 lbs 15 ounces and 21 inches long
ABOUT US
Liz and Shane
Bay Area, CA, United States
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.
