Hydrops and Down Syndrome- Caleb the Survivor

Down Syndrome is a condition that alone can cause so many emotions for parents to be, yet, when coupled with Hydrops Fetalis, Down Syndrome feels like a fatal sentence. That is what Google would have you to believe, that Hydrops and Down Syndrome is not viable. However, sometimes God does amazing things for reasons we may yet not know, and little Caleb is a testament to the way God can still work in our midst.

Where do I begin? There are many facets to our story and how we got to where we are today. Less than two years ago, I was a single in the Middle East speaking a foreign language I loved and living a purposeful life feeling right at home. If God revealed a glimpse of what my future held, hydrops and Down syndrome, I would not have believed it! But oh how man’s thoughts are not His! I met my husband, fell in love and was engaged/married before I could say “I do” because yes, it was THAT fast. In less than a year I was pregnant at 41! Life couldn’t have been more bliss…

At 10 weeks gestational, I tested positive for Trisomy 21. My husband and I were initially confused and sad by the news but only for a brief moment. We were ready to accept our new role as Caleb’s parents that God for some reason, saw us as fit to take on. We told ourselves that any gift from the Lord is a blessing and we weren’t going to reject His gift, so we prepared our hearts to embrace our baby boy with a joyful spirit, Ds and all.

From the beginning, my mantra was “It’s not about me or my husband…it’s not even about our baby. It’s about God’s glory” and that’s really what it ended up being. Our circumstances change when our perspective changes. We began to see God work in mysterious ways and had front row seats as He was glorified through the life of our unborn child. The biggest celebration was seeing my husband’s mom come to faith after wrestling with confusion, fear, and worry for our son’s fate. Her peace began to match ours as we placed our complete hope, faith, and trust in Him.

As this gentle storm began passing by, another one was brewing; an even bigger one…

A few days before the arrival of our son, I remember asking my husband what his greatest suffering in life was and shared that I hadn’t “suffered” since college. Neither of us have really suffered and receiving news about our son having Ds didn’t fall into that category for either of us. Now cue the dramatic music as it crescendos into the next scene because here is where the storm began…

I ended up spotting and going into preterm labor at 32 weeks. This wouldn’t have been a big ordeal but the doctor in triage discovered that our baby had a rare condition called “hydrops fetalis” via ultrasound. I know what you’re thinking…hydrops what? It’s exactly what my husband and I were thinking as we turned to Google for more information.

Hydrops is a “serious fetal condition defined as abnormal accumulation of fluids in the body” so what ends up happening is your baby becomes edematous and extremely swollen.

“Babies do not make it out of the delivery room” were the very serious and candid words of our doctor.

It wasn’t enough that our son had Ds, he had to have hydrops to go along with it! We were prepared for the worst.

My delivery story isn’t any first-time mama’s dream story. I didn’t hear my baby cry as he came out via cesarean. I couldn’t see what was happening and had to depend on my husband’s eyes to chart every movement going on in the delivery room. I remember asking him if baby was out and he said, “yes” telling me that the NICU team were intubating him in the corner of the OR. At that moment, the team quickly wheeled Caleb past me stopping only for a brief moment before rushing him off to the NICU. I got but a glimpse of my son when most mamas get the skin-to-skin touch with their newborn babies still attached to the umbilical cord…still one with their child.

I had not only become a mommy for the first time but a NICU mommy thrown into the world of “what if’s” and the abyss of the unknown – a waiting game at its best. NICU life is a yoyo – one minute dry eyes and the next wet eyes! My darkest day during the first 3 wks was sitting in the lactation room feeling like my body had been violated with sore boobs, a caesarean mark that will forever remind me of Caleb’s not-so-happy homecoming, bags under my eyes from pumping around the clock to a robotic baby (pump machine) and crying my eyes out…the ugly sort of cry with snot dripping from your nose and pleading with God in that ever so lonely moment with spiraling fears of losing my son.

Caleb at one point was probably the sickest baby in NICU.

We prayed everyday with our son.

We held onto Caleb loosely not knowing what the next minute, hour or day would bring. We spent his first few weeks in NICU celebrating weekly birthdays because it broke my heart to

think he might never live to celebrate one, so each week we would bring a lil’ gift and decorate his isolette, singing “Happy Weekly Birthday to you…”

Caleb ended up requiring a procedure for his hydrops called “Thoracic Duct Ligation.” We were assigned to one of the best surgeons in the area but nothing was guaranteed. Our doctor even said it was impossible to locate exactly where the leakages were in Caleb’s body (this is what was causing Caleb to swell) because there are hundreds if not thousands of teeny tiny blood vessels that make it nearly impossible for doctors to know exactly where the leakages are occurring. It was at that moment I realized God knew and that everything would be in His Sovereign control as He would intervene and mediate through the nurses and doctors of NICU.

Surgery successfully discontinued the leakages in Caleb’s chest cavity (where the fluid was collecting) but his belly began accumulating fluids and needed to be closely monitored. The doctor took us into a room and sadly shared that nothing more could be done from a medical standpoint if Caleb’s body didn’t begin absorbing the fluid on its own. This was probably my second worse day in NICU. I was back to crying waterfall tears and thinking ahead of myself as I thought about funeral arrangements and reminding myself to hold onto him loosely. God’s almighty power and strength got us through those very difficult days of waiting and watching…

Caleb’s belly measured 33.5 one day and then the next and then 33 and then back to 33.5 until we all realized his body was actually absorbing the fluids. This crazy, rocky storm was finally coming to an end.

I didn’t get to hold my baby until 40 days post his birth because of the chest tubes and ventilator he was on.

Below was the first weekly birthday party we celebrated with Caleb.

A Caleb sandwich

On January 8, 2018 exactly 91 long days since our baby was born, he was being discharged! I never thought we would see the day. Halloween, Thanksgiving, Christmas and the New Year passed us by while in NICU. We had watched so many other baby graduates exit out of NICU and now it was finally Caleb’s turn to graduate.

I created this mini diploma for Caleb during our earlier days in NICU after witnessing a baby graduate in hopes that Caleb too would see that day come.

Here’s our lil’ family on Christmas day.

He’s home now and has been thriving ever since. Him surviving hydrops can only be explained by the power of God and what we as humans call “a miracle.” He’s come a long ways from arterial lines, chest tubes, multiple IVs, meds, O2 on all sorts of ventilators, etc…and the only evidence of Caleb ever being in NICU are three very tiny scars on his chest. You would never know our son was a NICU survivor. He is my lil’ mighty hero and we thank God for him, extra chromosome and all!

In order to advocate for Down Syndrome, I create original and unique prints sold on Etsy. My faith and my son are my inspiration for my shop. Whether you’re a parent of a child with Down syndrome or not, I hope my prints can encourage you or someone you know today. You can follow me @jayceepeace on Instagram and/or check out my prints on Etsy