A special blessing

I wanted to share a little bit about our firstborn son, Cayden. Thursday will be his 10th birthday. I can’t honestly believe it was that long ago that we started this parenting journey with him. It was a bit of a surprise that particular day; I was in for a scheduled checkup with our OB specialist. She ordered a stress test and determined that he was not doing well with my sporadic contractions. In full precaution, we decided to induce early and get him out, rather than perhaps lose him inside the womb.

babyus2 copyWe knew from about 16 weeks of pregnancy that Cayden was going to have challenges in life. He had a condition called Holoprosencephaly, the type called MIH-V, (middle interhemispheric variant). This is a rare condition in which the brain does not properly split in the very early stages of pregnancy. Cayden’s HPE was caused by a unique genetic translocation that he had, affecting his 13th  & 1st chromosomes. He had a lot of related challenges that made him unique, but he was indeed a special blessing to those who knew him, and also to many who did not!

We were told that Cayden would most likely be stillborn, or die minutes after birth, like most children diagnosed with HPE. It is a condition that most doctors never see, and so they don’t know quite how to deal with it. HPE affects one child in 5,000-10,000 live births. However, including miscarriages, HPE may occur as often as one in 200-250 pregnancies. Current studies show that only 3% of fetuses diagnosed with HPE may survive to delivery, and the vast majority of these infants do not survive past 6 months of life. We were told to expect death, and recommended to abort. The prenatal doctor said that our child was incompatible with life, that he would be a vegetable, and that he would never know or understand love, nor know who we were. Wow! Talk about a punch in the stomach for a girl who always wanted to be a mom!

It only took a look at each other, for Joey and I to agree. No, we would not abort. Yes, we were aware of the risks. Yes, we wanted to continue with the pregnancy as long as we could. We understood the risks, the potential heartbreak, but we knew we were not going to play God and decide whether this child would live or die. Very soon after that initial sonogram, I heard a clear voice from God saying, “It will be okay.” I was flooded with a sense of peace that it WOULD be okay, that we would make it through, no matter the outcome, if only we relied on God to see us through.

Psalm 139 became our sticky verse. The whole Psalm is great, talking about how God knows us and protects us, how He is always with us. But beginning at verse 13, it becomes SO important to expectant parents, especially those with a special pregnancy.

13 For you created my inmost being;
    

you knit me together in my mother’s womb.

14 I praise you because I am fearfully and wonderfully made;
    

your works are wonderful,
    

I know that full well.

15 My frame was not hidden from you
    

when I was made in the secret place,
    

when I was woven together in the depths of the earth.

16 Your eyes saw my unformed body;
    

all the days ordained for me were written in your book
    

before one of them came to be.

 

Cayden was God’s creation, just as he was. Cayden had a special purpose in his life, however long that life was to be, and God knew before Cayden was born exactly how long it would be. Cayden was fearfully and wonderfully made to be a wonderful creation of God! And we were blessed to be his parents.

at my shower, 10 days out

Being parents of this special blessing meant monthly visits to specialists, more sonograms than usual, and private birthing classes (I just couldn’t deal with being in a class with other expectant parents who were so excited, knowing that we would most likely have a different outcome than they would. Plus, we were being prepared on how to potentially deliver a child that was stillborn, what that experience might be like, versus a live birth situation.) It really was not a fun pregnancy.

Instead of excitedly shopping for baby clothes and things, I was avoiding the baby shops. When I did allow myself to go, it was a struggle. Once, I actually even shopped for a burial outfit for him, but couldn’t bring myself to buy anything. I just couldn’t grasp the fact that this child, who was kicking and active in my womb, was going to suddenly die.I was debated on having a shower or not, because of the fear we would not have a baby to enjoy the gifts. Later into my pregnancy, I finally allowed my friends to love on me and ended up having 2 showers, one with my work colleagues, and one with my other friends. They were fun, but bittersweet, for sure. It was a confusing, crazy time.

So when we went for what was to be our final visit, I was not prepared to deliver! They were saying I was 36 weeks (I counted 39 – our numbers differed due to his small head size at early stages) and I was having some early contractions. The stress test was showing his heart rate dropping, so all caution was taken & induction started. I did not have my mom’s bag of stuff, I don’t even know if I had packed one yet! So while I was prepped and beginning the induction, Joey had to drive the hour to our house and get my things, call our family, feed the dog & drive back.

Meanwhile, I was put in a bed, covered in straps and monitors, IV and the works. It was not a pleasant time. I was scared, worried, alone, hungry, fearful, nervous and uncomfortable. I had an endless stream of doctors and nurses and students coming to visit. Many had never heard of or seen a baby with holoprosencephaly before, so we were a bit of a case study.

I agreed to some pain meds to “take the edge off” the contractions, and instead of getting what I thought would be Tylenol, got something that made me have wild hallucinations of pink elephants on psychedelic Dr. Seuss wallpaper. That only made me angry, because I thought I would miss the birth of my son in a drugged out stupor, perhaps never getting to see him in a sane state of mind. I was able to tell Joey that those drugs were NOT good, and to not have any more of that, and finally fell asleep for a little while.

When I woke up, ‘Pretty Woman’ was on an endless marathon ALL NIGHT LONG! I just watched it over and over, I don’t know why. I do remember that I kept missing the ending, because just then nurses would come & do rounds, so I would watch it again, waiting for that happy ending, I guess! I was so worried and stressed out that after the drugs wore off, I didn’t sleep much all night.

worried meAlmost exactly 24 hours after my induction started, Cayden Michael entered the world. He needed a little help breathing, but once he started, he did okay, passing his apgar with good numbers. I got to hold his tiny 4lb 9oz, 19” little self for a bit, but then they took him off to NICU to give him the specialty care they were sure he would need. He was tiny, but perfectly formed!

When they did his checkup the doctors were so surprised at his outcome. The early list we had gotten from the sonograms was quite incorrect. Cayden had no hole in his heart, no cleft lip or palette, no kidney issues. He did have HPE (but it ended up being less severe than the Semi-lobar originally thought), and some small physical issues that were not important at this point. He was breathing and eating and doing pretty well!

tiny manWe spent every moment we could in the NICU with him. I would pump and go feed him, stay with him as long as I could, take a quick nap and return. We held him as much as we could, but it was hard with all those wires and tubes! Cayden was originally on a feeding tube, because they worried about his suckle reflex, but soon that was taken out and he began eating from a bottle. He was a slow eater, but he was eating!

After a few days of monitoring, he was put into the step down nursery, where he was put to gain weight and get better at eating. He needed to maintain his body temperature before he went into that room, and he did that pretty good. He was so tiny though, we needed to get him some tiny preemie clothes; thankfully Joey’s work friends stepped up and got him a whole wardrobe of itty-bitty sleepers and onesies. (Thanks again!)

thinking elfThen, after only 9 days in NICU (which seemed like a much longer time) Cayden was able to come home. We had some early nursing visits to check his weight gain, and watch his feeding, but nothing more. We were home, and Cayden was doing well! Praise God!

I will share more about bringing Cayden home another day. Tonight I rest in the happiness and peace of my child, the fetus with a death sentence, who was born alive and able to come home.

 

God is Good!

Shira

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