Day 6

We spent a quiet day in the NICU watching Luna relax. We tried to be as quiet as possible so we wouldn't wake her but nosey little Luna opened her eyes several times when she heard us or her nurses talking over her bed. We tried to keep the noise and stimulation down to a very minimum but managed to sneak in some more pics...

the cutest little toes in the world

her nurse yesterday made her a cute little sign for her area

booties courtesy of the CHERUBS HOPE tote bag...unfortunately they are too small for her big feet

thanks to today's visitors: Tio Edwin, Tia Mari, Tia Lourdes, and of course Abuela

Once again, thank you to all who have sent up prayers for Luna's recovery. We continue to pray that she rests well and continues to fight the tough battle against CDH.

I also want to send up a prayer for ALL the babies and families who find themselves in a NICU. It is a very scary place to be in. May God give the families strength and restore health to their babies.

2nd prenatal appointment at CHOP

This past week I had my second prenatal appointment at CHOP. Riq wasn't able to make it this time so my mom came along. We were lucky to get nice weather for the drive to Philly. Once there, I had an ultrasound and got to see Luna. She seemed to behave a little more this time and managed to not move around as much and let the sonographer get all her measurements quickly. She's measuring at approximately 3.11 pounds. I'm so happy to know that she is at such a healthy weight. We also got to get a nice close up picture of her face which always makes me smile in the midst of my fears. I was then able to talk to one of the midwives on staff and discuss labor and delivery. Talking to her made me feel about 60% better about the whole L&D process. She seemed to have a very calm aura to her and reassured me that they will do everything they can to make the experience as untraumatic as possible. We then met with one of the neonatologists who did a great job of carefully explaining how Luna will be cared for at delivery and all the things that can happen afterwards. We then got to visit the NICU. Although it was my second visit, I really wanted my mom to visit so that she can get a better idea of what CDH babies have to endure. She seemed to handle it pretty well and was impressed with how well the babies are cared for. As for me, I figured exposing myself to the NICU as much as possible before Luna gets here will make it a less scary place once she's there.

CHERUBS HOPE tote bag

I've been meaning to share this wonderful act of kindness and support that we received from the CHERUBS organization after joining their online community back in December. It is a H.O.P.E. tote bag. The acronym stands for Helping Other Parents Expecting.

The tote bag includes a ton of support items and information for parents expecting a CDH baby such as a teddy bear, baby blanket, booties, journal, picture frame, baby hat, disposable camera, hand/footprints kit, CDH baby book, CDH parent reference guide, and various other items. Most of these items have been donated by other CDH families in honor or in memory of their cherubs.

I am so thankful for our tote bag. I have already started using the journal and have the rest of the items all ready to go for when we leave for Philly. If you are parent whose baby is facing a CDH diagnosis please, please, please go to the CHERUBS site to learn about the many ways this organization can support and inform you during your journey.

I look forward to the day when we can pay this act of kindness forward and contribute to creating HOPE tote bags for future CDH families.

Our Journey to Here...

At what should have been a regular 20 week anatomy scan in November, the MFM specialist found something wrong with our baby's chest and sent us for a week's worth of tests (i.e., fetal echo, MRI, etc.) after which we received a diagnosis of a right-sided CDH. All the doctors we’ve seen believe it’s a severe case of R-CDH with some liver and bowel up.

This news has completely broken me. This is our second pregnancy. We do not have any living children. Earlier this year we were pregnant with our first child, a baby boy who we lost to Trisomy 13 at 23 weeks gestation. Up to that point, I felt that was the most difficult, heartbreaking experience of my life. That was six months ago. I still feel the pain of his loss, yet we were so excited to learn we were pregnant again in August and had a CVS done at 11 weeks which came back normal. We also had countless ultrasounds including an early anatomy scan at 16 weeks which all looked perfect.

And yet here we are. I can’t believe we're here. All the joy we had is now gone and is replaced with an incredible amount of fear at the unknown. What’s going to happen to our baby girl? Will she make it? I wish I had an answer now but i don’t. I’m not sure I’m strong enough to deal with all that is to come.

I get what little strength I have from my husband who believes we have to give our baby girl the best possible chance at life that we can afford her. After meeting and consulting with several fetal care teams in various different hospitals, we’ve decided to transfer our care to the Fetal Diagnosis and Treatment Center at the Children’s Hospital in Philadelphia. Delivering at CHOP will allow us to be by Luna’s side as she receives the best immediate NICU care possible.

Doing everything we can to prepare for her safe arrival is the only thing that keeps me going. I keep wishing someone will come up to me and wake me up from this nightmare but that hasn’t happened. This is our new reality. I have good days and then I have horrible days. I’m scared out of my mind. We love our daughter more than words can say and want the best for her. We want her to fight the CDH battle and come out the winner. I dream of bringing her home and spending the rest of my life being the best mom I could possibly be. I pray every single day that God grants me that blessing.