Friday, February 27, 2009

Nayeli's 4 month check up

Nayeli had her 4 month check up today. She weighs 12 lbs. 15oz and is 24 1/4 inches long. The Dr. said she is on a steady and consistent upward curve on her growth charts. He said we are doing a great job in feeding her. Shane spoke with Dr. Hahn a majority of the time during our appointment because Nayeli was in a bad mood and cried. We believe she was moody because the appointment fell right in the middle of her morning nap. She usually sleeps during the appointment, next time we will try to schedule the appointment for after or before nap time.

Dr. Hahn asked us about Nayeli's vomiting issues. Shane explained that it is still happening but not as much as it was. We told Dr. Hahn that we spoke with UCSF regarding her vomiting and they gave us advice. Nayeli got her shots today and was very unhappy and sore. We gave her tylenol and that seemed to help her.

Nayeli is sleeping very well in her room. She has been sleeping as late as 7am. She seems very independent and likes her room. We check in on her alot and can't believe how she easily adjusted to moving into her room.

We are so grateful and thank God everyday for Nayeli.

Nayeli home after her shots.
Nayeli home after a few hours of getting shots. I think the Tylenol kicked in.
More Pics
Max does like Nayeli after all Best Buddies!

Angel Joseph Carter DeJohn

I just found out that Baby Joseph lost his battle with CDH yesterday. Everytime I hear of another CDH baby loosing their battle, I just cry and I am heartbrocken. Please pray for Josheph parents and sisiters keep them in your thoughts and prayers in this difficult time. They had Joseph for 23 days. Joseph fought so hard.

Tuesday, February 24, 2009

Happy Birthday Angel Andrew

Happy 1st Birthday Angel Andrew. You were so lucky to have a mommy like Tracey. She is so amazing. Your mommy didn't know me, she was there for me when I found out about Nayeli being diagnosed with CDH. She helped me remain strong through out my pregnancy. Andrew you decided to grow wings instead of feet. Your mommy decided to help others that were finding out that their babies are diagnosed with CDH. Precious little Angel Andrew you were here for a short time but you left an impact on so many of us. I will always remember you.

Sunday, February 22, 2009

Bagel, Cream Cheese and Tomato

Nayeli is enjoying her tummy time a little more each day. She went from 1 minute to 3 minutes in a month. She was complaining after 3 minutes. Today for the first time she did 5 minutes. I think that Molly and Twinkie cheer her on and are their to support her. Nayeli giggles and lets out a little laugh when Molly comes near her to try to kiss her. I tried to get it on video but it was too late to film. Next time. I went shopping for fleece PJ's for Nayeli and I couldn't find any girlie ones in her size. I found a cute blue PJ in her size so I had to get her a blue one. She still looks cute, plus it looks like a little doxie is on the PJ.
Nayeli slept in her room for the second night in a row. I cried again and didn't want to do it. Shane was so supportive and checked on her through out the night. Nayeli must be really enjoying her crib and room because she didn't wake up until 6:30am I almost slept in her room last night on the floor, it was so tempting. Nayeli didn't throw up last night, that made us really happy. Nayeli is our little warrior Princess and she continues to amaze us.

A year ago today I found out I was pregnant with Nayeli. I took a home pregnancy test first thing that morning. I went back to bed and I couldn't wait to tell Shane. Shane had worked the night before and got home around 3am so I wanted him to sleep a little longer but couldn't wait to tell him. So I woke him up and said "Honey we are both hungry, we are craving a bagel with cream cheese and tomatoes". Shane was half asleep turned over had the biggest smile on his face. We hugged and kissed and couldn't wait to tell my parents and his. I can't believe that was a year ago today.

Miss Independence

I am four months old today and I slept in my very own room last night all by myself. I finally had a good night sleep not listening to mommy and daddy snore and fart. Mommy cried most of the night because I was not by her bedside for the first time since I was born. Daddy tried comforting mommy but she still cried. So he gave up and gave her some tissue. Mommy asked daddy to keep checking on me through the night. Mommy was afraid to check in on me because she wanted to take me back to their room and put me in my small bassinet. I usually wake up when I smell mommy's milk so it's good that she didn't come to check in on me. I woke up at 4am and mommy and daddy heard me through the monitor. I went back to sleep after a diaper change and mommy fed me breastmilk. I was still sleeping at until mommy and daddy woke me up at 8am for my morning feed. I would've kept sleeping, I love my room. I also like being able to stretch my arms out. I threw up once last night, I was on a nine consecutive day streak until last night. I hope I don't throw up again. Mommy and daddy want to put my crib in their room tonight. I will try my room one more night and let mommy and daddy know by tommorow if they need to move my crib to their room.

The cross you will see at the end of the video was given to Nayeli by Angel Elli. We had the cross in Nayeli's bed while she was in the ICU and watched over and protected Nayeli while she was in the hospital and we have faith it will continue to do the same as Nayeli grows. We think of Angel Elli everyday.

Saturday, February 14, 2009

Nayeli's 1st Valentine's Day

Thank you Dan and Georgina for this cute Valentines outfit for Nayeli. Nayeli is not even 4 months old yet and she already has two boyfriends, Carter and John Michael. Nayeli has great taste because Carter and John Michael are adorable. They are both her Valentines.

We spoke to UCSF on Friday regarding her vomiting. The surgeon said that based on the description of what is happening to Nayeli she doesn't need any further testing at this time. They had us increase her Rinitidine from .5ml to .8ml. They told us that should help her with her vomiting. They also told us that her vomiting is common with CDH babies and not to be alarmed. For those of you who have babies taking medicines, make sure your Doctor increases their dosage with the weight of your child because Kaiser didn't tell us to and this should've been done months ago. The surgeon suggested we slightly elevate Nayeli's head when she sleeps at night. She said her head should be slightly above her feet and nothing more. She felt doing this would decrease episodes of vomiting. I was going to do this because Kellie, Carters mommy suggested it.

On Friday morning when Nayeli woke up for her 5am feed she scared the beejeebeez out of me. I saw her two legs out of her swaddle and the top part still velcroed around her arms. The bottom part of the swaddle somehow came over her face. I freaked! I was asking everyone about when to stop swaddling and I guess Nayeli answered my question. She has been sleeping very well without her swaddle and had minor spit up the last couple of nights.

For Valentine's day Shane surprised me with flowers, chocolates and cooked a tasty tri tip dinner. He is so sweet and romantic he cut the napkins and the tomatoes on the salad as heart shape. Nayeli was great by taking a nap and letting us have a nice dinner before her bath. Shane and I always celebrate Valentine's day as our beginning to date day. Five years ago today we started dating. Nayeli and I are so lucky to have Shane as a husband and father.
I love mommy's spa treatment

Daddy already has me brainwashed to be a Buffalo Sabres fan I was pointing at the logo in my sleep. I think I like the Kings better they have a cool uniform.

Thank you Carter for my onesie, I can't wait til I am big enough to wear it.

Tuesday, February 10, 2009

Nayeli's #4 RSV

Yesterday Nayeli had her #4 RSV shot. She has two more to go. We took pictures of her before her shot was given. She is always so unhappy after her shot her face turns bright red as she cries. As I was holding Nayeli I was a little teary too. I always cry when she gets her shots. It must be a mommy thing. Nayeli weighs 12 lbs. 10oz. That would explain my left bicep getting stronger. I guess I have to start alternating arms. The nurse told us Nayeli's Doctor would call us regarding further testing for her vomiting. She also said the Doctor will probably refer us to a GI doctor for further evaluation if her vomiting continues. We were so happy when Nayeli was having great nights not vomiting. It came back last night. We are hoping it's just from her RSV shot. We hold her upright for an hour and give her the gas medicine and she stills throws up. She only vomits at night.

Do you like Shane's new hairdo? Mark, Bodee's dad wore his hair in a funny way all day and posted his pic on their blog. I dared Shane to do the same. Here is Shane wearing his funny hairdo all day. Nayeli liked it, she smiled at her daddy's hairdo.

Friday, February 6, 2009

Good Morning Nayeli

Nayeli is always in a good mood when she wakes up in the morning. I had to get it on video for everyone to see. She let out a little gas at the end of the video so that was a bonus. We love her sleeping in our room with us in her bassinet but it looks like she might be moving into her room very soon. We will move her crib in our room if she continues to throw up at night. So far five nights without throw up, fingers crossed.

Molly wants attention too!
Twinkie and Molly keeping Nayeli company
This is as close as Twinkie gets to Nayeli. He doesn't give doggie kisses to anyone.

Tuesday, February 3, 2009

Phone Call to the Nurse

On Monday we called Naeyli's Doctor. Nayeli's nurse called us back and said her Dr. is out of the office for the week. We told her about Nayeli vomiting for a few nights. She asked if she was congested in any of those nights. We told her that on Thursday night she was. We were told by Nayeli's nurse the vomiting could've been triggered by her being congested. We told her that she did not vomit on Sunday night. We had a tentative appt. for this morning if Nayeli vomited again last night. She didn't. We are so thankful. Nayeli is doing much better and hasn't thrown up for two nights. She has had some spit up during the day and one spit up last night at 1am. Nayeli's nurse said if she vomits again this week to bring her in but for now it is not necessary. We have an appt for Nayeli to get her #4 RSV on the 9th so we hope to talk to her Dr then. We will beg him to do additional testing to give us peace of mind that nothing serious is going on.

Thank you you for your continued support and prayers. We hope and pray there is nothing to be worried about.

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