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.

Busy weekend

I haven't had a chance to post in a few days. We've just been pretty busy around here in the NICU. For starters, Luna's feedings have been increased all the way to 70mls every three hours which means lots of pumping on my part. Daddy and I also had to take a CPR class as part of our eventual discharge. We also had a ton of visitors again this weekend. Here are some highlights from the weekend.

Lola, Lolo, Father Jude (who married us), Tita Lee, and Tita Inday came to see Luna.

Tita Joanne, Tito Francis, and Tita Ivy paid Luna a visit also.

Although my little cousin, Ada, was unable to go in and see Luna she was lucky enough to get a chance to meet Hot Chelle Rae who were at CHOP visiting the kids.

Tita Jenn and Tito TJ also got to meet Luna this weekend.

Mama also got to meet her great-granddaughter for the first time.

"Look, Mommy! No picc line!!!" Luna is now getting her meds orally and can move both her arms freely. We're sooooooo happy!!!

QT with Daddy before he left for work. Bittersweet :/



This is new...

Luna continues to make slow and steady progress. Her feedings are up to 30mls. Her oxygen has been weaned down to 5 liters. She is becoming more and more alert and active. It is amazing to see her do something new each day. She is our little miracle baby.

Trying out an infant seat for the first time yesterday while keeping an eye on her nurse.

Using her hand to make sure her bobo doesn't go anywhere.

LOVING her infant seat today.

Kicking up a storm.

Big yawn after another busy day.

Good night, princess!!!

More milk, please!!

Luna had a good day today. Her feedings continue to be increased each day by 5 mls. Today she was up to 25 mls every three hours which resulted in some very yucky diapers which Daddy took care of. She was also started on Lasix to help get rid of a little bit of fluid around her lungs.

The physical therapist also came by to meet Luna and was very impressed with how alert she is considering everything she has been through. We will work on slowly getting Luna sitting up on our lap more and perhaps some tummy time depending on how her breathing responds to it.

We enjoyed an overall happy day with our little munchkin.

Good morning, Mommy & Daddy!!

Tito Albert paid Luna a visit

So did Tita Vivian :)