Sunday, February 1, 2009
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