12.13.18 Our Miracle baby- The worst night ever and the day after

Hello there,

It’s been awhile since I have written. On one hand I’ve been so busy getting ready for Christmas, follow up visits and taking care of the house and kids I haven’t had time. But also we are all doing really well and not much new to update. Dierks is growing and doing great, he is 12 pounds. He is nursing well a couple times a day, the rest of his feeding is by g-tube. The little fella just has no interest in a bottle. We will continue to try, but I’ve accepted the fact we may have to use the g tube til he’s one and eating all by mouth, and that’s okay.

I still feel a huge relief, especially on the weekends when everyone is home from work and school and I don’t have to leave them all to go to the hospital. It feels so good to be making breakfast on Sunday mornings, sipping coffee, willing ourselves to start the process of getting 8 people dressed and out the door by a certain time for mass. I love watching the Chiefs together cheering at the TV, as opposed to my lonely iPad in the hospital room.

We have a lot to be thankful for and it still sometimes feels like it was all a bad dream. The therapists and follow up visits are full of hope and happiness that Dierks is doing so well. In the hospital and early days at home, he wasn’t tracking well and we thought we may have some vision issues. He has improved so much to where we don’t notice any problems at all. The occupational therapist that visits weekly can’t believe his progress every week. In her words, he is thriving at home.

I thought I’d share some stories from the first days we were at Children’s Mercy. We refer to these days as “the worst night of our lives” (Tuesday the 14th) and “the day after”. The day after was the morning we woke up after sleeping in a Ronald McDonald room at the hospital, the night Dierks was admitted. I had a csection the day before so was still being pushed in a wheel chair. I woke up that morning hoping it all had been a nightmare. It wasn’t. I started thinking about what songs I would choose for a funeral. I was planning on having him wear the take home outfit that all my kids wore when they went home after they were born. Although I was assuming he’d wear it for the last time. A lot of details around these days are probably too personal and really sad but I was in the depths of despair thinking that this would be the day our precious boy would pass. Should we have the kids come up and meet him? Is that too painful? Yes, they need to meet him. He’s their baby brother, they need to meet him. We felt like we urgently needed to have my parents bring them up, we didn’t know how much time we had.

It’s all a little blurry but we had a lot of family at the hospital. I remember constant hugs over my shoulders as I stared at my baby in shock. He was moving and responsive to touch and sound, how can this be happening? My Godfather Brian who lost his own newborn boy was there to comfort me. My uncle Nick who lost his newborn baby girl visited. My cousins Tighe and Erin who miscarried a baby just weeks before visited. Many special people coming in and out to show us their love and meet and say good bye to our baby. Two very special people, my Nana and Papa also came to see us. My Nana hugged me and we cried together a long time. She whispered prayers and messages of love to me, gave me her rosary. Papa was there too, standing over Dierks, very calm and stoic. He’s seen a lot over the years so his lack of emotion didn’t really surprise me. When they were ready to leave, he hugged me and said, “Jessica, I believe in miracles.” I looked at him and it felt like a lightning bolt. Yes, that’s it. A miracle! I’m not sure why it hadn’t occurred to me that maybe we could see a miracle happen? Perhaps because doctors don’t talk about miracles. They look at an MRI and tell you what they see. It was scary to have hope, but for the first time, I did.

I think it’s important to remind you that Dierks had already been the named after this wise man, William Dierks Hodes.

From then on, that’s what we said, pray for a miracle, we need a miracle.

The kids did come to visit. The details of which are painful to relive. Their sweet scared faces, unsure of whether to be excited and happy about a new brother, or scared and confused as to what was happening. There was an amazing Child life Specialist there, helping us talk to them and read a book to prepare them to see a sick baby. They kept asking “when will he come home?” At this point we didn’t think he would be, but all I could say is “I don’t know.” To Betsy, Topher and Mac, who would not let up on questions and trying to understand what was going on, we explained that his brain was not formed correctly and if we bring him home, he would have a disability. I will never forget my 8 year old Topher’s response in between tears, “But Mom that’s okay, he’s our brother, we’ll take care of him.”

My heart broke in this moment, that’s all I wanted too. Just to take this baby home someday, in any condition, we’d be okay. But losing this baby, what it would do to all of us, I didn’t want it to be true. I wanted to give him the gift of a baby that we could love and take care of, no matter what special needs he might have. I give so much credit to our school, St. Elizabeth, for Topher’s profound response. They teach our kids inclusion for all differences and disabilities, it’s pretty amazing.

Later that day, I had to go back to St.Lukes to get checked by my doctor. My friend helped me shower while I cried to her. My doctor came in and we talked about Dierks, how surprised we both were to be in this situation. She helped me through my five other pregnancies, all with happy endings, we didn’t know how we got here. She asked me if I had pumped lately, I said no. I didn’t think there was a point. She said, “I understand but it may give you options later, that’s all I want for you is options.” A little later, Chris got in the shower and I decided to pump. When he got out and saw me, he broke down. It was hope, I was showing him that I had hope that our baby would eventually drink this milk. It made me love him even deeper to see him so vulnerable and impacted by it.

As I sat in the St.Lukes hospital bed visiting with my family and friends, it was brought to my attention that my good friends had organized a rosary at St.E’s for that evening. I was touched by such a gesture. The rosary was at 5:00 and soon after, I received many texts of pictures of a rainbow that was over the church as people walked out. I can’t explain it but anything as another miracle. From that point on, I was calm. Yes I was still scared but no more hysterical crying, I felt okay. I know now, this is Grace. I believe the rosary that night was the catalyst that changed the trajectory of not only Dierks health, but my ability to handle it. I can’t explain how I got through those days and weeks after, but I know that you all were not only praying for Dierks, but for us his parents as well. Your prayers and my faith saved my heart from breaking that day.

You know a lot of the ups and downs that came the three months after these days. But gradually, he got better. The doctor who had him on the worst night ever, told us she had to double check the name on her chart that first night because the baby in front of her did not match the diagnosis. Dierks would jerk when lights turned on. He had all his reflexes. He cried when they checked his temperature and drew blood. While it was torture to see him get poked and be uncomfortable, the doctors and nurses reminded us “this is good!” His brain is working and communicating. So the hope and faith in a miracle happening grew and grew from there.

There are many more stories of inspiration and God moments (what some may call a coincidences) that we experienced. I am trying to muster the courage and strength to relive some of them and share them. Over time it will get easier, but for now will leave you with the these.

I am over the moon in love with this baby boy, it hurts my heart to imagine any outcome other than what we have now. I’m not sure I’ll ever forget the desperation I felt on “the worst night ever and the day after”, but that’s okay. It humbles me and now fuels my love for Dierks, my other children, and my husband.

He is everybody’s baby, you all stormed the heavens in prayer with us and we asked for Gods mercy, and we got it. With the help of the miracle workers at Children’s Mercy, God sent our baby boy home for Christmas, and he is thriving.

With love,

Jessie

My sister Emily Severino, a talented photographer, captured some great pictures of our beautiful boy.