Neonatal Intensive Care Awareness Month Part I: Connor’s Story

September is Neonatal Intensive Care Awareness Month. NICA month was created to raise awareness and honor families who have experienced extended NICU stays, and the nurses and doctors who work hard to care for and provide hope for the families of the sickest babies.

Let me introduce my NICU Warriors:

                                     Connor David                                       Joseph Thomas

When I started writing this post, I didn’t realize how long it would be. I’ve decided to split it into two post, the first focusing on my angel baby Connor. Sharing Connor’s story is still very difficult for me. It is not a happy ending and my heart craves to hold my sweet baby in my arms one more time. The NICU is a place of many miracles, as my little Joey proves. Unfortunately, it is also filled with pain and heartache. Not all mothers get to bring their babies home.

I started getting sick at 24 weeks with my twin pregnancy. My blood pressure began to rise and I developed a headache that would not go away and plagued the last five weeks of my pregnancy. At 27 weeks I was given a diagnosis of preeclampsia and put on bedrest. I was fortunate to make it two more weeks before developing HELLP Syndrome and having to deliver via stat c-section. The hospital tried to transfer me to another hospital with our area’s level III NICU. My little Connor had other plans. While the hospital was waiting to make sure I was stable enough to move, I went into labor. Connor was breach and trying to push his little butt out. He was not waiting to get across town. Due to my very low platelet count and due to Connor wanting out, we were rushed into the operating room and the twins were born 17 and 18 minutes later.

Connor was my first born weighing in at 2lbs 10oz. In my post operation haze, the staff at the hospital gave me the opportunity to see the boys before they were transferred. I am forever grateful for that moment because it would be two days before I would be able to see my babies again. Connor was packed up in his transfer isolette, ready to go. Even with a cpap and tubes all over the place, he was beautiful. Though he was small, he had a full head of red hair and the face of his father.

The next day I was transferred to the same hospital as the twins. Unfortunately I was still on magnesium and not in a position to where it would be safe to travel to the NICU. It would be another day before I would be cleared and allowed to visit my sons. That morning my nurse told me that my pulse and blood pressure were still too high to leave my room and it needed to be lower before I could see my sons. Upon hearing that, my pulse and blood pressure instantly shot higher, and I fought back tears as I tried to will my numbers to go down. My husband came to my rescue and promising my nurse that I would take it easy, he wheeled me to the NICU for the first time.

At that moment, I remember feeling jealous of my husband. He knew what to do. He had talked with the nurses and he had seen the babies in their isolettes. It felt as if he knew our boys better than I did. I remember thinking that the nurses must think I’m a terrible mother. My boys had been there for two days and I had not been able to see them. The postpartum hormones coupled with the guilt of my failing body made it very difficult to fight back the tears that were threatening to fall. I was scared if I broke down and cried, I would be wheeled away an would have to wait longer. For my sanity, I needed to see my babies . My pregnancy was starting to feel like a dream and I needed to know my boys were real.

In the beginning, the boys were in separate rooms due to lack of space. I remember catching my breath as I saw the rows of tiny babies hooked up to machines that were constantly beeping. Over a year later, I can still hear the beeps of the NICU in my mind. I was nervous I wouldn’t know my own children. Dave wheeled me over to Connor first, and I sighed in relief. Connor was hooked up to several monitors, a feeding tube, an oxygen tube, an IV and was wearing little sunglasses to protect his tiny eyes from the bili lights that were shining on him, but that was my baby. Of course I knew him and I couldn’t believe that I ever thought I wouldn’t! The bright lights shined on his little body and emphasized his skinny limbs and translucent skin, but he was so beautiful. I stared for several minutes before Dave wheeled me into the other room to visit with Joey.

After visiting with Joey, I asked to go back and see Connor again. The area between the beds was narrow and the wheelchair was not easy to maneuver. As Dave was pushing me back to Connor, he accidentally pushed me into his isolette. Connor woke up and began to scream and cry. I instantly started crying because I couldn’t believe I scared my baby! I was so afraid that we hurt him, but one of the sweetest night shift nurses quickly came over and pulled out the tiniest of pacifiers and stuck it in Connor’s mouth. My sweet baby quickly stopped crying and settled down into a nap. The nurse soothed me by saying he was okay and he had already quit crying! I would continue to cry for another 15 minutes before calming down. It was then that Dave decided that I had enough NICU time for now and pulled me away to head back to my hospital room. I vowed to try and control my emotions, but any postpartum woman knows that the out of control hormones come out of no where.

It would take a week after their birthday before I would be allowed to hold my children for the first time. Many mothers will say that their happiest day was the day their children were born. The day my sons were born was terrify, confusing, and filled with uncertainty. My favorite and happiest day is the day I was able to hold my sons for the first time. Our nurse unhooked Connor and stuck him in my shirt for skin to skin contact known as kangaroo care. My eyes welled up with happy tears as I said hello to my baby boy and softly sang lullabies into his tiny ears. I remember how fussy he was before calming down and curling up on my chest. I was able to hold him for several minutes before he would forget to breath causing his heart rate to fall. These spells are very common for preemie babies, and worried that I was somehow causing extra spells, I allowed for our nurse to put Connor back into his isolette.

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The next few days I would alternate between kangaroo time with Connor and Joey. That Saturday we walked in and learned that Connor was being administered medicine in an attempt to close a hole in his heart known as a PDA. Since they were also trying to get Connor to gain more weight, a human milk fortifier was added to my breastmilk. With all the changes and the medicine being administered, even though it was Connor’s day to be held, I didn’t want to disturb him. I skipped holding him believing that I would get him in my arms the next day. The boys were finally in the same room and right next to each other, so I held Joey instead and would talk to him and point out his brother telling him that they would be together again soon. Our nurse encouraged me to change their little micropreemie diapers for the first time and I remember thinking if I could do this, I could do anything. I took several pictures and when we left a six o’clock that evening, I agreed with Dave that we could take that night to catch up on sleep and not come back to the hospital. The next day was Mother’s Day and I wanted to enjoy every moment I could soaking in the love of my babies on my first holiday as a mom.

That evening I changed into comfy pajamas and curled up on couch and watched bad Saturday night tv. I was thinking of drifting off early when my phone rang around 9:30. My heart dropped into my stomach when I saw that it was the NICU. Remembering a nurse telling me that the only calls we should worry about are night calls, I was shaking when I answered. The nurse practitioner on duty was calling to inform us that Connor had blood in his stool and they weren’t 100% sure what was causing it. While they were waiting for tests and X-rays to come back, they needed my permission to give him a blood transfusion. Giving permission, I hung up the phone with the feeling that I needed to get back to the hospital. As I was getting dress, my phone rang again saying that they X-rays had come back saying that Connor developed necrotizing enterocolitis (NEC) and his intestines were quickly dying and he would need emergency surgery that night in an attempt to save his life. Driving quickly to the hospital, when we walked in my poor little baby was on a ventilator with an IV in his head being prepped for surgery. His little eyes found mine and he had this look as if to ask, “mama? What is going on?” I put my face against his isolette and tried to comfort my baby as best I could. I kept telling him it would be okay. The doctor was going to fix him and then I would get to hold you in my arms again and we would visit Joey and everything would be okay. The look of his eyes, wide open and staring straight into mine is a memory that is forever burned on my brain. Shortly there after he was wheeled away to surgery where we were told they would try their hardest to keep him alive.

During the surgery, I sat by Joey feeling as if I couldn’t leave him. Dave had to move and walk around, not being able to just sit and wait while his son was in surgery. Neither of us knew if Connor would make it. I begged God not to take my baby. We had already survived what was suppose to be the dangerous part of our story. About an hour after the surgery began, the phone at the nurses station rang saying that the surgery went well and they were bringing Connor back upstairs. I texted Dave and we watched as they wheeled our baby back into his spot. I nearly fainted in relief, because his color looked so much better than when he left for surgery. The surgeon was confident and we even joked and laughed thinking the worst was over. The nurse practitioner came over and told us that they would be keeping Connor sedated to help him heal and that the next 48 hours would be critical. Dave and I felt so confident that we ignored the 48 hour warning and headed home to catch a few hours of sleep before heading back in the morning to celebrate our Mother’s Day miracles.

After crawling into bed around 3:30, I instantly fell asleep. At 6:30 I woke up with a start to the buzzing of my cellphone. Terrified, I answered. The nurse practitioner was calling again. Connor had taken a turn for the worst and we needed to get back to the hospital as quickly as possible. As Dave drove, I prayed again for my son. I begged. I made promises. I asked to spare him and take me instead. After years of trying, we were blessed with twins. Giving us two beautiful boys just to take one back after 12 days wasn’t fair. The neonatologists met us in the waiting room and began to prep us for the worst. Connor would need another surgery and moving him to the operating room was too dangerous, so they would need to do the surgery right there. They allowed me to see my baby and my heart sank. My little boy looked nothing like he did the night before. He was lifeless, swollen, and bruised. I began to cry as I encouraged him to keep fighting. We were ushered into a private room to wait the outcome of the surgery. After only a short amount of time, both the on call neonatologist and the surgeon came into our room. I could tell by the look on their faces that they didn’t have good news. Both my husband and I sat in shock as we listened to the doctors tell us there was nothing more that they could do. I was asked if I wanted to hold him before they stopped CPR. I nodded and we followed the doctors to say goodbye.

As I walked into the room, I was surprised by the number of blue scrubs that surrounded my son. It looked as if every nurse in the NICU was watching my son and praying for a miracle. Connor was carefully moved into my arms as the nurse continued with CPR. I looked at the beautiful face of my son and kissed his tiny head over and over as I said I loved him. I remember the doctor leaning over and quietly telling the nurse that she could stop with compressions, my little baby was gone.

We were slowly pulled away back to a private room as they cleaned Connor, dressed him in a little angel outfit, and wrapped him in a blanket. As my husband and I sat there waiting, numb, our baby gone and our dreams destroyed, my phone started buzzing. Looking down I saw that I had several text messages wishing me a happy mother’s day. The holiday that celebrated being a mother was mocking me on the worst day of my life.

The baby photographer at the hospital took a moment to take several professional pictures and gave us a free CD to have as a memory of my beautiful son. As grateful as I am to have these pictures, I have never been able to look at them. The grief and pain I have from losing my child is still raw and sneaks up on me when I least expect it. As hard as it was to say goodbye, I am happy to have had twelve days with my beautiful son than having to go a lifetime without.

After that day I wanted nothing more than to crawl into bed and never get out. Life didn’t make sense to me anymore. All throughout my pregnancy, even knowing we were high risk, even with my blood pressure being out of control and developing severe preeclampsia and Class I HELLP, I thought everything would be okay. I lived in this naïve, innocence that nothing bad could ever happen to us. That optimism was shattered and I didn’t want to face the world again. It was so hard to force myself to get up, but in the isolette next to Connor, his twin brother was still fighting for his life and he had long road ahead of him.

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4 thoughts on “Neonatal Intensive Care Awareness Month Part I: Connor’s Story

  1. Meink says:

    I’m sure this was very difficult for you to write; I know it was very difficult for me to read. Nevertheless, it’s an important piece — and an incredibly important part of your life journey. Thank you.

    Like

  2. Brittany says:

    My heart hurts for you. I have only heard of things like this happening, but reading a mothers true experience of such an unfortunate event is so different. I am a mother of twins and reading about you going through what every mothers worst fear is… I hope writing this brought you some kind of closure, because it’s beautifully written. I am so sorry for your loss.

    Like

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