A Special Baby Enters Our Lives and We Will Never Be the Same

After our first son was born we lived in the question of “Should we have another baby?” for a very long time. One near death experience (my husband would argue two) during that pregnancy was very sobering. It made us think long and hard about our options. When our oldest was two and a half we finally decided to start pursuing a domestic infant adoption.

I struggled with the decision a lot because quite frankly I felt insecure about my ability to parent a child with unique needs related to bonding and attachment or not fully knowing a genetic history of a baby should medical issues arise. Our decision to adopt came down to a matter of obedience for me. I believed it was what God was asking us to do and so we began the process. And I was excited to have a baby again. I love the baby phase.

It took several months, but we got all of our adoption paperwork turned in, passed our home study, paid lots of money, and were officially a waiting family on the website. I was really hopeful that a birthmother would fall in love and choose us.

Then we got a positive pregnancy test.

It was a complete surprise, actually it was a shock, but we started up the well known routine of doctor appointment after doctor appointment in order that I have a healthy pregnancy. Slowly got excited about the idea of birthing another baby.

The beginning of my pregnancy was very rocky because my hCG levels were not rising as fast as they were supposed to be. We braced ourselves for a miscarriage but this little guy surprised us on the second ultrasound showing us very obviously that he was growing and his heart was beating strong.

At 20 weeks we discovered that Naffer had a two vessel cord, instead of a three vessel cord that most have. We knew that this could sometimes be linked to a chromosomal disorder but the echo-cardiogram and sono of his kidneys assured us everything was fine. We declined further testing because we believed that we could carry to term even if we knew something was abnormal.

At 34 weeks (when my first was born) we started to get panicky. I started experiencing some contractions and less fetal movement which landed me in the hospital twice. Finally at 37 weeks with elevated blood pressure, my doctor said, “You’re having a baby.” And I did.

In the operating room I told all the doctors and nurses the story of my pregnancy with Mackel. I told them this baby was not planned. I clearly remember one of the techs saying, “Well honey, you can make all the plans you want but there’s Someone upstairs pulling the strings.”

I’ve hung onto that statement a lot in the last few weeks. Sometimes it’s hard to believe that God is sovereign–in control and loving at the same time.

Naffer was born late in the month of May weighing 5 lbs, 9 oz and measuring 18 1/2 inches long.

The night he was born we suspected things were not right. His cry was weak and he was generally mellow. Mellow to the point that you wondered if he didn’t care where he was. Late that evening he had a big episode late where he began choking on amniotic fluid and turned blue right in front of us. That sent him to the nursery and when they couldn’t get his temperature up, that landed him upstairs in the NICU.

Over the course of the next week we discovered several little abnormal things–his heart is slightly out of position, his kidneys are small, and a few other minor features that look syndromic when you examine and analyze every part of his body. The biggest problem was that he would not take any of his feeds orally without getting striders, gasping, and aspirating.

By the end of the second week in the NICU we had a confirmed diagnosis of 5p- syndrome, or Cri du chat syndrome. All of the little things we were learning about him added up to one big diagnosis. From where the short arm of his chromosome 5 has broken off, it looks like a pretty severe case.

We are living in lots of unknowns right now. What we do know is that a special baby has entered our lives and we will never be the same.

My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!

Also be sure to check out my list of Favorite Books on Disability!

#diagnosis

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