Sunday, February 1, 2009

Nayeli News



On Saturday January 24th, we took Nayeli to the Doctor after a night of Nayeli having restless sleeping. Nayeli was awake most of the night with alot of gas. We gave her gas drops and tried to comfort her. The only way she was able to relieve herself was by kicking her legs up in the air and expressing her gas. We took her to urgent care. The Doctor had xrays taken and examined Nayeli. The Doctor said Nayeli's xray was fine. I asked about the swallow test which is a test that will help in monitoring her GI tract to see if there is a block somewhere. I asked for this test because Nayeli had vomited a couple of times during the week. The Doctor at the time told us it was not necessary.

Nayeli is doing fine overall but has vomited for three nights in a row after her night feed at 8pm. We hold her upright for 40 minutes. She goes to sleep and then vomits 3-4 hours after her feeding. She usually vomits all of her feed but still tends to sleep until 5am. We are concerned about this developing trend. We are calling her Pediatrician on Monday and are demanding to have a swallow test. Although they have assured us there is no malrotation we want whatever tests to give us a definite answer. This is alarming to us because it is increasing and we don't want to just write it off as a reflux because of her CDH condition. We hope we get answers and her vomiting stops. Our HMO is with Kaiser and we can't wait for our next appt with UCSF because we feel we are getting the run around with Kaiser. It seems like every concern we bring to their attention is explained away as if it should be no concern to us. Through our conversations with them they are extremely nice and help us in any way possible but it seems they are not familiar with CDH.

My parents drove up from LA on Friday and left today. They try to come once a month to so see Nayeli. It's great having them around. Nayeli loves to be held by my mom and loves to stare at my dad. On Friday my mom watched Nayeli for a couple of hours and I went to see Shane play in a fundraisng hockey tournament. I called my mom several times to check on Nayeli. This tournament is once a year with Police and Firefighters. Each teams gets 1,000 dollars for their choice of charity to give to. Shane captains the team and they were the Champions and won the "Cal Cup" on Saturday. Shane and I left Nayeli with my parents for a couple of hours on Saturday while we drove to Kristi and Craig's. They are expecting Kaden who is diagnosed with LCDH. They are delivering Kaden at UCSF in April. It was great meeting them and we are here for them to give them the support they need through this CDH journey. We wish we could've stayed longer but we had to make sure to get back before 730pm so we could get Nayeli ready for bedtime. Nayeli threw up several times last night. She sleeps through it. Shane and I take turns geting up and suctioning her. We sometimes just lay awake waiting to see if she will throw up. We hope and pray that her vomitting stops.

A year ago on January 31st Ava was born. She passed away on May 7, 2008. In honor of Ava we released balloons on her 1st Birthday. To read her story her blog is on the right handside Kaden and Angel Ava. Click on picture to see balloons in the sky
Nayeli on video saying Grrr

9 comments:

Nancy L said...

You are so right to demand the GI tests. As a nurse who does Utilization Review, (part of my job is to call insurances on patients in the hospital)I do understand your frustrations with HMO insurance. Your baby's physician should be able to convince your insurance that the tests are necessary and if he can't, he seriously needs to read up on CDH. Good luck on Monday.
Your baby is adorable!

beverlyjl said...

Liz and Shane, I am no expert. But my granddaughter, Cadenne Hope McDaris, is a CDH baby. Back in April 2008, she was experiencing the same type of symptoms and actually was hospitalized.

The first time, after multiple tests (including x-ray) they decided it was just a stomach bug and sent her home. The second time (I believe just a few weeks later--maybe less) they determined that it was indeed a malrotation and did immediate surgery.

They also have Kaiser, by the way, but Cadenne was treated and had her repair surgery at CHLA. But Kaiser has done most of her follow up care. The point is that they CAN be wrong, so keep pushing.

Anyway, all that to say if you have any questions or anything I know that my daughter would be happy to talk with you by phone or e-mail. Her e-mail address is: kariabi@earthlink.net. Her name is Tricia. Her blog is: kariabi.blogspot.com

Hope that helps!

Gail said...

Liz and Shane ...remember ONE thing through ALL of this...the insurance companies may be intimidating..but YOU are the bosses. Insurance companies get paid extra for NOT running tests..their primary concern is preventitive care....you on the other hand, have a child born with CDH..which is not as common as say a regular hernia. If you EVER have a concern, you have every right as Nayeli's parents to demand whatever you think she needs..if you don't like the answers you get from the person you are talking to, you have the right to speak to someone from the top. She is precious to you. She is NOT a statistic..she is your daughter!! Michael went through similar bouts of vomiting..not as intense. He did have tests and all was well..just attributed to his condition...even as an adult, he found if he ate too much, it came back up...but we at least knew it wasn't serious. Please don't hesitate to follow through on WHATEVER concerns you have. You are both speaking on Nayeli's behalf and have rights, I will continue my prayers, please keep us posted and hang in there. Gail

The Bennett Family... said...

praying for answers this week...

Debbie

Tracy Meats said...

Many prayers that you soon find out why Nayeli is vomiting and it is nothing serious or requiring surgery. Just from experience with Ian, he would go through spurts of vomiting and doctors could never pin point what was causing it and ultimately said it was his acid reflux and about that time his meds were adjusted too.

I love the video of Nayeli--she has a beautiful smile!! It looks like she enjoys her grandparents too and that is so nice they watch her and you are able to get away for short period of times. Children always have a special bond with their grandparents. Now that my boys are older, they love spending time with Grandpa and Grandma and beg to see them.

Follow your gut instinct regarding Nayeli and keep asking questions and hopefully you find answers regarding her vomiting. Keep us posted.

Hugs, Tracy Meats - mom to Ian, born with a LCDH on 4/3/04 and WY and CO State Rep. for CHERUBS

Alex & Ingrid Houchin said...

Hi Liz and Shane,

So sorry to hear that Nayeli is vomiting her feeds. We do hope that they will find out soon where the problem lies so that your beautiful baby girl continues to gain weight and grow.
Our thoughts are with you.

Hugs,
Alina, Ingrid & Alex

Terri said...

Liz and Shane, she is just too cute!

Keep insisting. If you have feelings continue to persuade them to see things your way. It is for the health of Nayeli.

You guys are in our thoughts and prayers. Keep the faith. Who ever said kids were easy? NOT ME!

~The Helmick's

Gina said...

Go with your gut feeling. When Wyatt reherniated and had a blockage, an x-ray showed nothing. The CT scan showed everything. Hopefully it's nothing:)) She is a cutie pie!!

Gina
Wyatt's Mom

Elizabeth said...

She is adorable.

If you are feeling there is something not quite right - by all means - insist with your doctor and they should be able to work with those insurance companies. They can be bears sometimes but Moms can be Lions ;-)