Mighty Daniel - Rainbow Miracle

As I got older, having children wasn't a priority and  if it happens it happens. Met my now husband and I would like to give him at least one. During our first three years of marriage we went through infertility, 2 losses. We finally decided to go for IVF treatment. We had every medication needed to start the process. I even started birth control again, just for this process. 

On day three or four, I started to feel "Funny", a very familiar feeling. I was thinking, I have to take to take a test. A BFP! All I could think of is, how is this possible? Down payment has been given, and here I am  pregnant!?

The pregnancy was pretty smooth. All I had was  nausea. The only thing that helped relieve it without taking medicine, was ice water, and gum. Come to our 20 week scan, when we found out the devastating news of our son to have Congenital Diaphragmatic  Hernia. The doctor that told us this news wasn't the kindest. I zoned out immediately, angry at myself, and wondering the criticism I would be receiving of how I could fail at this.

Our follow-up appointment was with a different doctor, and he changed my thoughts  to fight for our son. He referred me to another MFM in Miami because he felt morally this was the man I should go to for FETO. FETO is a procedure when a balloon is placed in the trachea of the fetus still in the womb. Going through many tests, examinations, echoes, and an MRI. As we got closer to the due date  to decide on FETO. My MFM did a double take and said "he grew!" I cannot tell you how much he grew, but it was enough to say, he no longer qualified for FETO.  We did not go through FETO, but at 30 weeks my water did rupture. Being Polyhydramnios I was able to keep baby safe for the next seven weeks in the hospital. I wasn't on bed rest, but I was patiently in one room for seven weeks.

37weeks was the day of induction, but my body decided to start the process on its own. At 5am my usual "natural" alarm woke me up and I had A LOT more fluid come out. I was already 5 to 6 cm. Off we went to the L&D. Three long yet rewarding hours of pushing my sweet boy, at 11:09 PM he was finally here. Prior to this, I did ask the doctors to please allow my husband to cut the cord. Not many families with a  CDH baby has that privilege and I asked please, it's the least I could do. They did! I had a 7 1/2 pound white tushy on my chest. This is where his journey began. A dozen from the NICU, waiting as I pushed my last push. He was immediately intubated, stabilized and taken to the Nicu. As all of this was happening, I proclaimed out loud in prayer that our Lord is to guide the staff & my boy. It was something I prayed about when the day came. 

When I was finally able to go see him. There he was, our miracle rainbow baby. All I could do now, is pray to our God to save my son from everything he will be enduring. That ECMO machine was there, the irony that he did not need it, but the baby across my son did. The relief, the sadness I felt it was "suppose" to be for him, but I know our God said no. Deep down, I do know if Daniel did receive ECMO nothing good would have came from it. It does save lives don't get me wrong, but things do happen on that machine. He was moderate/severe left CDH and he had a rough journey. Besides this rough journey, 

I did make a commitment to provide my breastmilk.  I pumped and pumped. I am truly surprised I was able to provide his requirement until he was 11 months old.  Daniel did go through multiple infections causing  him to be re-intubated more than once. The last intubation when doctors had no idea what was going on. I did request an x-ray to check if he has re-herniated or I even thought "will I be taking home a trach baby?" The doctor reassured me that we were not there yet. Around three months of age, it was confirmed Daniel did re-herniate and needed another surgery as soon as possible. He got his second repair, and by my request a g-tube. Yes, I did request because I knew he was going to need it and this hospital did not make a habit to discharge with a NG tube. This situation did allow me  to just  pump while he was on TPN for about a month. 

Finally, our son might go home. Of course, another illness, Parainfluenza hit our Daniel and delayed him from getting off of the high flow cannula. I felt defeated once more. What now!? Why can't he catch a break? That was truly scary. About a month after that, he was finally on regular oxygen, and we were finally hearing the word "Disney ". That was a safe word in this NICU. 

I had many encounters with NICU staff being surprised on how Daniel was doing or how we were doing. Their comments will always stay in my memory. 

"WHAT?! A CDH baby didn't need ECMO

!?" She had me think to be patient and give my baby time. He was doing so much on his own. 

"You were being tested"as she nodded her head in approval.  I ran to my Lord and Savior every single time. Pleading to switch places. To take my breath and give it to my baby. 

Another time after Daniel was feeling better from parainfluenza. I knew he needed 2 albuterol treatments a day. The nurse came back to me 

saying  "The Dr changed his order and she said this is why she is comfortable for you to take him home"

Daniel spent 198 days in Nicu coming home with low requirement of oxygen and his Gtube. As I type this, we are 13 days away from May 30th. One year anniversary from bringing our miracle boy  home. Daniel has successfully graduated receiving 6 months of  occupational, physical, and feeding therapy. I am so proud of him. I take pride to say he is my son. At 18 months, he is finally running and of course getting boo boos around the house. 😅 

Something I wasn't sure if I would ever see. I want many families who have been received this diagnosis to never lose hope and yes, have faith. Speak for your child or any loved one that is in critical care, don't be afraid to say no. This definitely was not the roller coaster I wanted to get on. In fact, I hate roller coasters, but this one was worth it. Daniel's life as any other CDH baby, we don't know what we might deal with in the future. All I pray is it doesn't happen & Daniel stays as strong as he has been so far. 

Daniel Yarin, His name was chosen before knowing his diagnosis. 

Daniel - lions did not get him. 

Yarin - he will sing joyfully. 

Daniel will sing of joy to our God for his life and testimony.