Having Isaiah Changed Our Lives – Part 4

New To Isaiah’s Story?

If you are new to this blog you will want to read the previous posts on the series we are writing on Isaiah’s premature birth. My husband and I started this journey with Isaiah eight years ago. It’s been quite a ride and we have learned a great deal in that time; not just about extreme prematurity, but Down Syndrome, Autism and various other special needs. I’m not an expert on these things. I just want to share what we’ve learned and detail the path that got us to where we are today.

Leaving the Specialty Clinic with Hope

That day back in August 2008 leaving the specialty clinic I had no clue what was ahead. I was filled with a strange sense of hope. I thought the injection I received moments before would be a sort of infant “miracle grow” and it would right everything that was wrong in my situation. Or, maybe it was clinic staff’s calm and professional demeanor that kept alarms in my head from going off. Either way, at some point during the drive from that clinic to the hospital my husband and I passed through some cosmic portal and drove straight into Chaos Land.

The Blur After Arriving — Emergency Surgery

My husband’s post here explained what he remembers after we reached the hospital. To me it was all a blur and I don’t remember much in the operating room other than I was freezing, nauseated and terrified. The moment Isaiah was out, the doctor held him up so briefly I couldn’t even gauge his size before he was handed off. I know they estimated his size at 1 pound and were excited to announce he was actually 1 pound 5 ounces. At that moment, I didn’t think that was much to get excited about. I couldn’t fathom a one pound baby and trying to pair that with the super brief glimpse I got was difficult. That bit of “good news” did nothing for the panic raging inside me. However, the doctors and nurses around me seemed to shift pace immediately to a more relaxed state.

It makes sense looking back. The patient they had (me) was stable, the urgent patient (Isaiah) was handed off to another team and he was no longer their responsibility. I listened to idle chatter while being unable to jump up and run to see how my baby was. I pleaded with Dave, “Go. Be with him, I don’t want him to be alone”. I wish I could’ve left my body there and told the doctors, “Here, you finish this up, while I tend to my son. He needs his mama.”, but I couldn’t.

Scared at First Sight

It was about two hours later when I was finally wheeled over to the NICU to see my newborn son. The machines next to his bed had tubes and wires running everywhere all connected to my son in some fashion or another. My bed was rolled right next to his and I was able to get a better look. I don’t remember if I asked if I could touch him or if the nurse offered, but I was able to use one of the side portals to reach in. The nurses warned me not to rub him as his skin was very delicate and could tear. I wasn’t prepared for his size and he reminded me of a frail, newly-hatched, translucent-skinned baby bird.

Isaiah's NICU station

Isaiah’s NICU station

As I gently placed a hand on him I took note of the scene before me. Starting at his head there was a tube that appeared much too large for his body taped into his mouth. He had wires attached to his umbilical area and sensors stuck to his chest. The diaper on him was no bigger than a playing card and it loosely covered him. There was a soft cloth name band on his ankle. He didn’t move much, but his eyes opened slowly here and there. He looked weak and it terrified me.

Is This Even Possible?

How was someone so tiny expected to survive?? It couldn’t be possible and yet here he was! I was in awe as I noticed my hand covered over half of his body. He was 12 ¾ inches long and only 1lb 5 oz. My due date was December 20. He supposed to be my “Christmas baby” Yet, it was a late August afternoon and here I was face to face with him. All I could do was place my hand on his teeny body and whisper through tears, “Mommy and Daddy are here, honey. We love you.”

The machines and monitors beeped and alarmed while displaying all sorts of data I couldn’t understand. Continually, my eyes darted from blinking lights on those machines to my son. It sank in: my body was not providing him what he needed now; it was all mechanical. After a few minutes of crying and feeling utterly useless I was wheeled back through the tunnel and to the other hospital where I would recover for a few days.

My Hospital Stay

I arrived at my room and settled into bed. I sat there a bit shell-shocked and waited for the spinal block to wear off.  This should be a time where he’s wiggling in my arms squawking as we get to know one another. Looking back, the contrast is so sharp between what should have been and what was.

The staff informed me I could “view” our baby on the TV in my room. I could call the NICU and have the nurses put a video camera face-down on top of his Isolette. It would only be for 15 or 20 minutes if they weren’t attending to him. Of course with the camera in this position and it being so close, he filled the TV screen and he looked considerably bigger. It would give me hope and a feeling of “oh, he looks pretty good”; that is until a nurse would reach in to touch him. Then the size comparison of adult hands next to him was sobering and my fear bubble to the surface again.

As I was able, I could have friends walk with me via the tunnel over to the NICU. I was again overwhelmed with the amount of life-sustaining machines and monitors Isaiah was hooked to. There wasn’t much my visitors or I could really do except look at him. I felt as if I had a strange, new pet in a cage. We’d lift the blanket off the Isolette just a little and peek in at him. He was usually sleeping, so after a few moments of “visiting” we’d shuffle out and make the 10 minute walk back to my room.

Going Home Without Him

After a week in the hospital, I was able to go home. It felt so strange to me. Usually, cheery nurses would be bustling in and out with discharge papers for me and baby. Smiles would abound as they got to take a last peek at the new bundle of joy. None of that happened. Since I went from the clinic to the hospital, I changed into whatever was brought from home. I took my other clothes and put them in a plastic hospital bag along with my paperwork and we left.

My husband and I made our way down the hallway to the elevators and passed rooms full of laughter and new baby cries. We still had our baby, it wasn’t as if he died, but it still felt….distorted. We went to the NICU to see Isaiah one last time before leaving the hospital. I dissolved into tears while I prayed for God to watch over Isaiah as I felt like I was abandoning him there. I wanted him to know mommy and daddy were going to be back every day that we could.

We left the hospital and entered a new reality. One I didn’t expect, nor had the coping skills for—yet. I had a very premature infant in a hospital whom I didn’t know if or for how long he would survive. The cause of his prematurity was unknown other than a vague guess from a doctor just a week prior. I didn’t know if I provoked something to go wrong. Everything in the situation frightened me, but I had faith; I knew God would be close no matter what the outcome of the situation would be.

Writing This Has Been Hard

My apologies it took so long to update on Isaiah’s story. These are a lot of emotions I am sorting through and trying to wrestle into words. Thank you for taking the time to read our story thus far. I will keep plucking away at more posts about this experience.


About Deb

Hello, I'm the Lady of the Castle. Actually I'm more like the ring leader in a circus. I've been married to the King for 14 years and we've been together for 22. I homeschool the kids and keep the home in order as it relates to cleaning and cooking. I'm a disciple of Christ and am learning how to keep my walk grounded in Him.

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