Very First Day of Daycare

2 years, 5 months, and 9 days after she was born with a severe right-sided CDH, my beautiful baby girl had her very first day of daycare. The emotions that filled my heart as I prepped her lunchbox and other school supplies the day before were extremely overwhelming. On a daily basis, I stand in awe of how far my Luna has come. But that night was a particularly emotional one. I cried and I cried. Mostly happy tears along with some tears of gratitude mixed with tears of amazement. I prayed so so hard for this little one. She continues to prove how strong she is, how strong we all can be when faced with the impossibly difficult hurdles that life can sometimes throw at us. So when I dropped her off, I was okay because most of me knew that she would be just fine. Although she cried for me and her dad to stay, I knew she would be okay. And guess what?

She did great! Her teacher said she calmed down quickly once she met the other kids in her class. She sat on the potty twice. She made her very first arts & craft project which I will treasure FOREVER. And she even napped the whole afternoon. I could not be prouder of my baby girl. Here's hoping to many, many more good days at daycare. :)

Our First CHOP Fetal Family Reunion

Wow! Has it really been over a year since I last posted? So much has happened since then. We welcomed a beautiful healthy baby girl into our family in August 2013. Her name is Emilia. We call her Mimi and she is just as amazing as her big sister. Speaking of which, our super girl turned TWO this past March! She is growing so fast and she is doing so well health wise, thank God. We celebrated the wonderful occasion by having lunch with some family and friends and then enjoying the circus. We had a GREAT time!
Another wonderful event that we wanted to share was our very first trip to CHOP's Fetal Family Reunion which we attended the weekend before last. We spent the weekend in Philly (which has a very special place in our hearts for a couple of reasons) with the girls and Abuelo and Abuela. We spent Saturday at the Philadelphia Zoo. It was a very fun-filled day!! Later that night while the abuelos watched the girls, Riq and I had dinner at Distrito which is the restaurant where we celebrated Luna's discharge the day before she came home. It is soooooo yummy!

Then on Sunday we made our way to CHOP for the Family Reunion. It was so overwhelming seeing the incredible amount of people who have lived the very same journey we have. We got to see sooooo many little heroes with smiles on their faces. It was a beautiful day with so many fun things to do. We can't wait to participate in it again next year.

Road trip! Mimi did not make the picture because she was buckled into her rear-facing car seat. Sorry, not sorry, Mimi!

 

Back at the Wood Center. But this time for a celebration!!!





Our CDH hero!!!





Luna and Mimi having a great time with Abuelo and Abuela.

Luna waving to Abuelo from the Coast Guard rescue raft.
 

We made it into the famous Family Group Picture! Soooooo many families!

Before leaving Philly, we stopped by the Ronald McDonald House where we stayed during Luna's time at CHOP. We wanted to deliver all the soda pop tabs we collected for Luna's Annual Birthday CDH Drive.

We collected about 15 pounds of tabs thanks to our wonderfully supportive family and friends! It felt great doing something, although small, to give back to the house that did so much for us.

 

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

Philly Baby meets NYC

Since Daddy took the early part of this week off for the 4th of July we decided to spend the day in NYC. This was Luna's first trip to the city. It was a beautiful day, thankfully not as miserably hot as this past weekend was. We enjoyed a nice leisurely walk on the High Line, had lunch at Pop Burger, and bought dessert to-go at Chelsea Market. Overall, a beautiful day!

Strolling the High Line

Smelling the flowers



Family

Bottle break

Daddy and his girl

My beautiful baby



Our Lil' Blessing

I wanted to share this beautiful video that my husband created to share with family and friends at Luna's baptism. It shows the crazy ride we were on before, during, and after Luna's birth. The whole journey feels surreal at this point, but watching the video reminds me of how blessed we are to have Luna with us. I feel it every singe time I look at her. She truly is a miracle from God.

Here is the link to the video: Our Lil' Blessing

Hope you enjoy it!

Luna, meet Beach

Yesterday was a fun day (aside from the horrible parking mission). We took a trip down the shore to Belmar for the annual Seafood Festival. It was exciting because Luna got her first glimpse at the ocean. I think she liked it.

2 Months Old!

I can't believe my little miracle baby is two months old already. Although it feels like time has flown since the day she was born, I try very hard to take it appreciate each day as a gift from God. I just love waking up and seeing her beautiful face next to me every day. She is the best thing that has happened to me.

Here are some beautiful pictures of my Luna...

6 Weeks Old!!

Luna is 6 weeks old. Its amazing how quickly time flies. We have been home for a week now. It feels so good to be home. We have been trying to settle into a routine full of feedings, meds, diaper changings, naps etc. I feel like I'm finally starting to get the hang of all the little details that go into taking care of another human beings. I feel like we really took the NICU nurses for granted. They did soooooo much to take very good care of my little one. I know I still have a long way to go and I'm excited to learn something new everyday.

Here is Luna getting ready to go to church.

Hanging out with Abuela.

We're Outta Here!!!!

I haven't posted in a few days but we have been very busy. Last week was by FAR the most exciting week we've had in the NICU. Luna's doctors and nurses started throwing around the "D" word early in the week as they were getting ready to remove her NG tube and nasal cannulas.

This was Luna on her last day wearing her feeding tube and cannula.

Here is a picture of my daughter free of all tubes and wires (except those monitoring her vitals) for the first time in her short little life.

Luna on her way to get a routine MRI as part of her discharge requirements. Once there I was a very nervous mom as she was taken from my arms and placed in the MRI machine. Fortunately, I was allowed to stay in the room with her and the MRI only lasted like 20 minutes. She did well and only started crying as the machine was turned off.

Daddy arrived just in the time to hear one of Luna's NPs tell us that we could take her home on Saturday. We were excited, scared, and anxious since we wanted nothing more than to take Luna home, but unfortunately we arent exactly ready with all the "baby gear" one usually needs to welcome a baby home. When I was pregnant and was told of Luna's diagnosis, we decided we did not want a baby shower. I just did not want to jinx anything. The last thing I wanted was for something to happen to Luna and to have to come home to a house full of baby things. I would rather have to run around getting things at the last minute which is what we are still in the process of doing. LOL

Luna IS a rockstar!!! So much so that she was discharged from the NICU on April 28th, 2012. Just 5 weeks after being born with a severe right-sided CDH.

All dressed and ready to hit the road in her carseat.

After waiting all day, finally signing the discharge papers.

Can you tell he's happy? LOL

Walking off into the sunset. :)

After a veeeeeeeeeeeery long journey, it's finally "home sweet home" with Daddy.

I'll be the first to say that there were times when I didn't think Luna was coming home. I was scared, sad, and angry. But this journey has reinforced the power of prayer to me. My daughter is home. She beat the odds. God is so good and beautiful. I saw him in the doctors. I saw him in the nurses. I saw him at the Ronald McDonald house. I saw him in all our family and friends who have supported us. We thank you ALL!!!

Another Busy Weekend

We enjoyed another busy weekend in the NICU. This weekend we continued bottle feeding Luna. She is doing very well with that. We also experimented with breast feeding on Sunday which also went surprisingly well. Daddy and I also attended a NG tube class which is part of the discharge process. We learned a lot during the class but are hoping and praying that Luna continues to do well with her feedings and will not need her NG tube for much longer.

Here are some fun pictures from this weekend...

Snuggle time with Daddy.

Getting pretty for my weekend visitors. Thanks for my cute little outfit, Tia Denia!!!

Time for my bottle!!

Kuya CJ and Ate Serena played in the waiting room while the Pormentilla-Dumapit family visited. I also saw my Abuelo, Abuela, Great-Abuela, and Tia Lucy this weekend.

Looking adorable. This is also the moment when Luna decided she wanted to roll to her side. LOL

I wonder where she got her sleeping pose from (btw, he's just pretending to be asleep, folks).

Waiting patiently for Daddy

Well, Luna and I spent a rather quiet and mostly uneventful week in the NICU patiently waiting for Daddy to come home on Thursday night. Here are some pictures from this past week.

Lifting her head and staring at her physical therapist.

Holding her bobo in place.

Trying to get rid of the stuff on her face. She was actually able to pull out her feeding tube a few times this week. I can't blame her. I'd try to get rid of it too.

Sleeping like an angel.

Daddy left work on Thursday and drove straight to the hospital to see his princess.

Then Daddy then got to participate in the most exciting news of the week....he got to give Luna a bottle!!! My baby girl is feeding out of a bottle!!! This may sound trivial: just another baby drinking out of a bottle, right? But NO! This is a HUGE accomplishment for Luna considering the severity of her CDH.  She was able to take 1 to 1.5 ounces at each feeding today (the rest went through her feeding tube). She continues to amaze us everyday. We are sooooo proud of her. We just pray that she continues to do well on her bottle feeds so that we can get rid of her feeding tube soon.