Marking International CDH Awareness Day 2013

Today I can't help but look back at this crazy journey my little family has been on since November 2011 when we found out at our 20 week ultrasound that our unborn daughter, Luna, had a severe right-sided congenital diaphragmatic hernia and was given a very grim prognosis. That day I decided that I would not take this sitting down. I knew I had to do something. I had to fight for my daughter. So that day I called CHOP and asked them for help.

Luna was born at 3:48am on March 24, 2012 weighing 8 pounds, 12 ounces. That was the scariest moment of my life. We did not know how she would do. We did not know what would happen. But Luna proved to be a tough little baby. She had her repair surgery at 4 days old. That was the second scariest day of my life. Thankfully, her surgery was a success. Although her hernia was large, she did not require a patch. She also had a Ladd's procedure and her appendix removed along with her repair. Luna handled the recovery very well. We were finally able to hold her at 10 days old. She was extubated at 11 days old. She came home at 5 weeks old.

Today, Luna is a very happy and healthy 1 year old. We are so, so, so blessed. She is the absolute best thing ever. CDH, not so much. I pray that myself and other CDH parents will continue to raise CDH awareness so that hopefully one day we may learn more about CDH and be able to perhaps prevent the incredible amount of pain it has brought to so many families who weren't able to bring their babies home. I hurt for these families and pray that God bless them and bring them some sense of comfort in the midst of such pain.

Wearing my CDH bracelet at work.

On the left: holding Luna for the first time at 10 days old. On the right: Luna and I today.

Paying it forward...

In honor of Luna's 1st Birthday we decided to hold a CHERUBS Hope Tote Bag Drive to collect items for the tote bags that CHERUBS mails out to new CDH families. We are so blessed with such kind and generous family, friends and coworkers. As you can see we were able to collect quiet a few items. We can't wait to ship everything out to CHERUBS. I remember when we first joined and received our tote bag. It brought a sense of comfort during an otherwise unknown and scary period in our pregnancy. We hope that these items can bring the same feeling to new CDH families.

Celebrating Luna by Paying it Forward

Our dear Luna is turning the “BIG 1” this month. We are beyond happy, excited, and thankful to reach this very momentous milestone with our strong and beautiful daughter. We thought we would do something special to give thanks to one of the organizations that provided us with so much support throughout our very bumpy CDH journey.
 
We've decided to ask our family, friends and coworkers to participate in a month long CHERUBS HOPE Tote Bag Drive to collect the various items that go into each Totebag that is then delivered to parents expecting a CDH baby. We are so excited to "pay it forward" to this great organization.

Merry 1st Christmas, Luna!!!!

I can't even begin to properly describe how amazing this Christmas has been. As I watched my now 9 month old daughter happily tear paper and totally disregard all the presents she received, I couldn't help but be overwhelmed with emotion. This has been the Best. Christmas. Ever. This little person has reminded me of the true meaning of Christmas. For years, I always looked forward to Christmas but was kinda underwhelmed by the actual day itself. Not this year. Luna has filled my heart with so much love and joy it feels like its going to burst. I am so blessed to have her and such loving, beautiful family.

Here's hoping you are also having a wonderful holiday!!!

 

 

Happy Thanksgiving!!

Happy Thanksgiving to ALL!!!

What I am I giving thanks for this year?

- The medical technology, ultrasound techs, and doctors who spotted Luna's CDH early enough for us to prepare for her arrival. Although hearing and coping with the news was extremely difficult, it allowed us to learn more about CDH and make the decision to deliver at CHOP.

- Which brings me to: The entire medical team at CHOP (prenatal team, midwives, nurses, neonatologists, respiratory therapists, and the surgeon who did Luna's repair). I know in my heart of hearts that they saved my daughter's life. And because of that I thank them from the deepest corner of my heart.

- My husband, who has been my best friend for the past 9 years. Thank you for repeatedly telling me "everything is going to be alright." I loves you.

- My mother, who is sooooooo much stronger than I will ever be. Thank you for always supporting me and holding my hand through the heartbreaks, pains, and joys. I am so very blessed to call you my mother. Te quiero mucho, Mami!!!

- To Luna's personal little angel in heaven. Thank you for watching over her. I love you.

- To our family and friends who have shown us so much love and support. Thank you for visiting us at the hospital, sending your words of love, and praying for Luna. She is blessed to have such a big and loving family and network of friends. You are ALL great!!!

- To my Luna: I love you more than words can ever say. You are the reason I was put on this earth. You are my sunshine. You are my strength. Always remember that you are loved.

- To my Lord: Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! For everything and for always: Thank you!

Hope you all enjoy a happy, healthy, and restful holiday season!!!

CHERUBS 2012 Masquerading Angels Ball

I wanted to post some information on a great upcoming CHERUBS event. Unfortunately we won't be able to make it but maybe someone reading this blog will be interested.

Formal Charity Halloween Masquerade Ball

"Come join us or a magical night for a good cause. Celebrity guests, enchanting decor, amazing music, a casino, silent auction and beautiful attire will make this a night to remember."

"Money raised from this event will go to CHERUBS to fund services to further help families of babies born with Congenital Diaphragmatic Hernia. CHERUBS is a 501(c)III international children's charity."

Here is a link to the event site: http://www.cherubs-cdh.org/angelball/

6th Month CHOP Follow Up

WOW! Has it really been over two months since my last post?! I guess time really does fly when you having fun. Luna will be 6 months old next week and today was our 6 month follow up with the team at CHOP. My mom came along with us for the very long day since Daddy couldn't make it. It was a veeeeeeeery long day full of back-to-back appointments but the general consensus is that Luna is doing great. Here are some highlights from our day:

- Although Luna was not on ECMO she will be followed by the audiologist for a couple of years. The audiologist found that Luna responds very nicely to the sound of voices but then again I could have told her that since Luna's favorite past time is listening in on others' conversations...to a fault...lol.

- The (amazing)surgery team was very happy to see Luna again and were pleasantly surprised to see that she is growing so well. Luna is weighing 17 pounds, 9 ounces and is 27 inches tall. She is at the 85th percentile for overall growth. Since Luna has been doing so well since being home (Thank the Lord) we decided to stop her Lasix and Potassium (she was on very small doses anyways). We will then stop her Zantac in a week since she hasn't had any trouble with reflux. Hopefully she will respond well to these changes and she will be totally med-free!!!!

- The neonatologist was also very happy with Luna's health, growth, and attentiveness. She expressed some concerns over some "mildly immature motor skills" and so we discussed ways we can improve them such as increased tummy time. She also made sure to remind me to get everyone at home a flu shot and to always keep Luna away from sick people. She also reminded me to request the synagis shots from my pediatrician to protect Luna during RSV (Respiratory Syncytial Virus) season.

- After labs, an ECHO, and an EKG, the cardiologist determined that Luna's heart has not shifted and is still on the right side of her chest instead of the left side where it should be. He reassured me that that is not a problem and she will be able to lead a normal life with a right-sided heart. Also, if she continues to do well heartwise at her 1 year follow-up he will discharge her.

I thank the Lord above that our visit to CHOP went so well today (despite the horrible weather to and fro). My miracle baby continues to flourish. We are so very blessed.

Luna and Abuela at the end of our marathon day at CHOP