Monday, December 29, 2008

Our Sweetheart


Hello everyone! It seems like forever since we posted something. We appologize to Nayeli's fans!

Not much exciting about Nayeli's first Christmas, as her mommy and daddy were Eberneezer Scrooges. We kept talking about decorating and the days kept passing. Next thing we knew, it was Christmas. Next year we plan to go all out as Nayeli will be older and we can start trying to feed her the Santa Claus stories.

The exciting news of the day.....or shall we say night......is the fact that Nayeli slept from 9pm to 6am last night. I think we both woke several times to make sure we could hear her breathing. It is all a funny process....a month ago, we would have been next to her bedside making sure her chest was rising and falling. We have gotten more comfortable with her sleeping and now usually just listen for her breathing, which is usually very easy to hear as she breaths loud like daddy. So, Nayeli's first full night of sleep. Nayeli also had some good long sleeps into the 4am hours a couple of times this week. We know this wont always be the norm, but we are very excited and hope this is a sign of things to come.

This is no doubt due to the great mommy-ing of Liz. I told Liz she should have been in the military because she is so programmed and runs such a tight scheduling ship. Liz has Nayeli on a schedule now, and has her in bed every night at around 8pm. During the day, she does not Nayeli nap more than two hours at a time, as she has found, that if she stays awake most of the day, she sleeps better at night. So, she gives Nayeli a bath every other day, and on the in between days, she gives her a massage. After the bath, or massage, she feeds her, and that pretty much knocks her out. Last night, since daddy was home, Nayeli decided she wanted daddy to drill instruct her into eating, as only daddy can do. She had a little gas and we had a conversation about the importance of her eating and growing to be a big girl for daddy. Nayeli decided it was in her best interest to eat as daddy too.....can be very persistant. Nayeli has been doing well with her gas. The nutrionist recommended a fortified supplement for her gassy issues and so far she is doing alot better. We forgot to mention her weight and length at the UCSF appt. it was 10lbs 2oz and 22 inches long. Her two month check up is this Wednesday.

We want to thank our regular followers and supporters, as you give us the strength each day. We thank you all for this and hope your 2009 brings health, happiness, and prosperity (in these tough economic times) to your family. We also want to thank God for every day we spend with our baby girl. There is not a day that goes by that we do not realize how blessed and fortunate we are to have Nayeli. We know this is Gods miracle and doing!

Notice I am not wearing pink

Saturday, December 20, 2008

UCSF Surgery follow up appt


On Friday, December 19th Nayeli was seen by the surgery team, a nutrionist and a pediatrician at the UCSF CDH Follow up clinic. During our visit, we learned all of the people there had CDH children. We wished we had known this as we would have talked to some of them to learn more.

They took x-rays of Nayeli's chest and she didn't like being held down. She is like this at home when we swaddle her. She likes her freedom and this worries Shane. Shane had a hard time holding her down because she likes to wiggle around. Shane calls her his little boogy woogy wiggle worm. In the end, I had to help and hold her too. Shane held her arms down and up above her shoulders and I had to hold her legs down. Unbelievablely, the x-ray tech had already put two different weights on her legs and Nayeli kept kicking them off. Nayeli cried so loud and the technician said this was great and what they wanted so they could get a good look at her lungs.

Nayeli became amazingly cooperative after being held down. After her x-rays she was weighed, measured and we talked to the nutrionist. She told us we have to keep fortifying my breastmilk each time Nayeli eats until she starts eating solids. We mentioned the gas problems to her and she suggested a different formula. Shane is going to get it tomorrow and we hope it helps our baby girl out. If it helps out, we will post this information and the name of the formula we swithced to. We were dissapointed to hear this because we feel this may be causing her to be gassy along with already being gassy because of her CDH.

The Surgeons said Nayeli looks great. During out visit, a lot of DR's and staff came in and checked Nayeli out. We were so distracted, but kept hearing staff say they wanted to see the miracle and "happy story baby."

Nayeli's x-rays showed that her left lung has grown and the DR's said her left chest is "now totally filled with her lung." We were extremely happy to hear this and asked them to repeat their comment again because we didnt believe what we had heard. Nayeli always likes to be on her best behavior at the Dr's office, and as with every other appointment, she slept the entire time.

In the end, Shane ended up emailing one of the CDH Dr's and asked a several questions. We felt so rushed and distracted we had a list of questions we forgot to ask. Hopefully the DR will respond soon and we will post her responses as they were very CDH specific questions.

We have been following Alina's story. She was born on Friday, December 19th. Please pray for Alina. She is scheduled to get her repair surgery within a day. To read more about Alina (see the link on the right side of our blog).

Nayeli getting xray

Nayeli sleeps as she waits to be seen by her Surgeons

Dr. Nobuhara holding Nayeli

Wednesday, December 17, 2008

I love my Binkie

Nayeli is doing well overall. We love spending every minute with her. She is a snuggle bunny and loves to be held. Nayeli is still having gas issues some days are better than others. We are trying to get a schedule, but I think Nayeli has her own schedule in mind. We have an appointment with UCSF on December 19th. Nayeli will be getting a follow up check up with her surgeon. They are going to take Xrays of her chest and do a developmental assesment.



I am also a little Kings fan!

Look I can hold my own binkie

I also like my fingers

Sunday, December 14, 2008

National Childrens Memorial Day

Compassionate Friends (an organization that provides support for bereaved parents) is sponsoring a world wide candle lighting. This candle lighting is a ceremony to remember children who have passed away. It is held today December 14th at 7:00pm for each time zone. Please take part in remembering Andrew, Ava, Elli, Elias, Faith, Kaden, Skyla, Seth and Will who lost their lives to CDH this past year along with the other beautiful children who have lost their lives.

Candles will be lit at 7:00 pm in all time zones so that there will be constant light around the world in memory of all the children who have lost their lives.

Angel Andrew February 24, 2008 to February 25, 2008

Angel Ava January 31, 2008 to May 7, 2008

Angel Elli August 19, 2008 to September 08, 2008

Angel Faith March 06, 2008 to April 05, 2008

Angel Kaden August 18, 2008 to September 16, 2008

Angel Skyla October 13, 2007 to June 13, 2008

Friday, December 12, 2008

Twinkie and Molly Love Nayeli






Nayeli is doing well and has a great appetite. She used to get real bad gas shortly after eating and we have noticed she now gets it before eating. This has been a problem for us as Nayeli does not eat if she has real bad gas. It has not been a daily occurance, but has become more common this week. We plan to mention it to the DR, as the gas relief drops do not seem to help most of the time. We are curious if there is another infant safe gas remedy.

Twinkie, Molly, and Nayeli have become very aquainted and get along great. We were concerned the dogs would act different when Nayeli came home. The dogs love her and get excited when we invite them upstairs to hang out. When Nayeli cries, we announce this to Twinkie and Molly as we invite them upstairs. They (well at least Twinkie) runs past us and they always run into the bedroom and wait for us by Nayeli's bassinet. It is pretty cute and a funny sight to see. Max has gotten used to Nayeli's cries and doesnt always run out of the room when she cries like he used to. He does tend to be more solitary and sleeps in the guest bedroom or the hallway during the day. Overall, he seems ok with the change but seems the most effected.

We are so thankful each day God blesses our family. We are very blessed with the way things have gone for our family.

Thursday, December 11, 2008

Respiratory Syncytial Virus (RSV) Vaccine

Nayeli sleeps after her vaccine

Nayeli at home after her vaccine


On December 9th, Nayeli had an appt. to get her 2nd series of RSV vaccine. RSV is given to CDH babies along with premies and babies with conginetal hearts. We met her personal nurse for the first time and she is really nice. Nayeli's Pediatrician came in to see how everything was going and ansewered alot of our questions. As usual he puts us at ease and was overall very conforting letting us know everything is fine.

Nayeli weighed 9lbs 12oz and is 22.25 in length. When the nurse gave Nayeli her vaccine I didn't think I was going to cry but I did.

What is RSV?
Respiratory syncytial virus (RSV) is a major cause of respiratory illness in young children. RSV causes infection of the lungs and breathing passages. Most babies who get RSV just get a cold, but RSV can cause pneumonia, other lung problems or death. In adults, it may only produce symptoms of a common cold, such as a stuffy or runny nose, sore throat, mild headache, cough, fever, and a general feeling of being ill. But RSV infections can lead to other more serious illnesses in premature babies and kids with diseases that affect the lungs, heart, or immune system.

RSV is highly contagious, and can be spread through droplets containing the virus when a person coughs or sneezes. The virus can also live on surfaces such as countertops or doorknobs, and on hands and clothing. RSV can be easily spread when a person touches an object or surface contaminated with the virus. The infection can spread rapidly through schools and child-care centers. Almost all kids are infected with RSV at least once by the time they are 2 years old.

RSV infections often occur in epidemics that last from late fall through early spring.


Prayers needed for the following CDH babies

We have been following Alina's CDH journey. Alina is still inside her mommy Ingrid. Ingrid had the tracheal surgery and had the balloon removal yesterday. Please pray that Alina stays inside for a few more weeks so she can get stronger and fights this CDH battle.

Kristi and Craig are going to UCSF on December 12th for a consultation. Please pray for them and for their baby Kaden not to have any other health issues.

Marion and Jason are flying cross country to UCSF on the 16th for a consultation. Please pray for them they have only a couple of days to decide if they are going to have the tracheal occlusion surgery for their baby Virginia while they are at SF.

Saturday, December 6, 2008

Swing time!

Nayeli is staying awake alot longer and having a great time exploring. She is very interested in light, as we have some sky lights in our room she always seems to stare out the windows or lights. She has good days and bad days with her gas issues. We have had to give her an anti-gas medication several times to help her out. Her gas must be pretty uncomfortable as she sometimes screams at the top of her lungs. We can actually hear and feel her gas when we hold her. Once she release her gas from both ends she feels alot better and falls asleep.

Nayeli sometimes wants to stay up and not sleep during the day. She starts off happy but then gets fussy. We thought it may have something to do with her medication, but it is supposed to make her drousy, not keep her awake. The other day, she stayed awake for the greater part of seven hours and screamed most of the time. My friend Terri brought it to my attention that it could be the Reglan that makes her restless so we are going to check with the Dr. to see if there is alternative medicine. The last few days, she has been doing pretty good other than some minor gas that wakes her. We thank God for each day with Nayeli and are having a great time watching her grow.

Thank you for your continued support. Enjoy the pictures and videos.



Here are some videos of Nayeli on her swings.
video
video
Our friend Terri Ava's mommy remade the "Little Angels" video and added Nayeli to it. Thank You Terri. Check out the video with Nayeli.