Monday, March 26, 2012

Kash's story

Meet Kash. I've never met Kash, but I feel like I know him just looking at the pictures of him and reading the beautiful story Kash's mom wrote about him.
I met Kash's mom at St. Louis Children's hospital back in September 2011 when we both went to a memorial service. At the service they were honoring Noah and Kash among other kids. Kash's mom came up to me afterwards, because after sharing Noah's story she could relate to a lot of things I had told. I'm so glad she did. I don't know if I would have. I think we have a pretty special friendship only knowing each other for a few months.
Kash was such a strong little boy, and I absolutely love that he got to experience being outside in a gorgeous garden with his parents before taking his final breath. That is something I wished we could have done with Noah. That garden on the rooftop of Children's hospital is an amazing getaway from all the machines and where you can just soak in the beautiful landscaping they have created there. I miss that place.


I can't even describe the fulfillment that was felt knowing that our beautiful son was coming. It was just the most perfect thing in our lives, so incredibly meant to be. Getting pregnant with my little boy was my rainbow after a PCOS diagnosis in early 2010. I had been so sick for so many months, then months of hormone therapies & cleaning up my on-the-go lifestyle as a busy teacher & mother to 4 already. I ate well, I took my vitamins, I monitored cycles, I laid & prayed so many nights, & then there was that perfect morning knowing I was pregnant. This baby was a key to my healing & knowing I would be okay.  I knew his name was Kash before I knew he even existed. I had defeated my PCOS diagnosis.

It was in November of 2010 that a nurse called letting me know that my Quad Screen came back positive for elevated AFP, which I was told meant my baby had neural tube defects. Total agony & devastation. I signed on with a neonatal maternal specialist from Champaign-Urbana & started months of in-depth blood panels & sonograms. Each visit only brought good news, always showing no signs of any defects, but the specialist became concerned that Kash would be too small & wanted to keep me on close monitoring for the duration of the pregnancy. We had defeated the neural tube defects scare.

On  Monday, April 11th, I made the last OB trip before my April 13th c-section. In a fifth pregnancy of nagging false-labor, it was a shock to be told I was definitely in labor for the first time ever in my life. I made calls letting everyone know Kash wanted to come & I headed to the hospital, with 3-year-old daughter Kendall in tow. At 3:15 pm Kash McKinley Barnfield was born, weighing a hefty 8lbs & 21in long, a week & a half before his April 21st due date. We defeated the low-birth weight scare.

Kash immediately showed signs of troubled breathing & was whisked away to the Level II Nursery. He was monitored through the night to watch his O2 saturation & blood gas levels. As his numbers stayed low, we began to worry. It was 5 am the next morning when I had a nurse help me up & wheel me in to see my little boy. He was so big & beautiful, & he was here, & everything that we had worried about for months seemed to be okay. They had thought that he had ingested some fluid during the section & had wet lungs. I couldn't touch him, but watched him sleeping, so jittery & breathing so hard. He was going to be flown to St. Louis Children's Hospital “just to be on the side of caution”, but that he would be right back home in a day or two.

It was Tuesday morning & they placed Kash in my arms for a few moments before he left for SLCH. He looked up at me with his beautiful, big brown eyes & he felt so good in my arms after months of worry.

My husband John went to SLCH to meet Kash & be with him, as I spent the next 24 hours getting up & on my feet after surgery. John sent picture messages & text updates. He talked about the nurses calling Kash a strong little bunny because he was so quick & jumpy & nearly tried to hop off the table. She said she had never been beat up by a baby before as he kicked & fought her, so full of strength & life. He had to be sedated & intubated for treatments, but was responding well.

I arrived Wednesday to join my strong bunny, Kash. I did not know how long I would stay at SLCH, but that I was not going to leave until my little boy was better. I met his extensive team of doctors & he was finally given his rightful diagnosis, Persistent Pulmonary Hypertension of the Newborn. It's a common & very treatable condition occurring when a baby's lung pressure does not transition to breathing in the world after being in the womb. The pressure in the lungs stays high making it difficult for oxygen to saturate the lungs & travel through the body systems. The medical team said things looked good & we had lots of ground to go if we needed, but that it wouldn't be necessary. I pointed out the blue, plush bunny that was placed in Kash's room by hospital volunteers. We would then take that bunny & place it in his arm when we left to go down the hall to sleep in the family sleep room for a few hours each night.

By Thursday morning Kash was maxed out on the drug amounts he could have & it was decided to change his ventilation system to a more aggressive machine. This machine was big & loud & shook his body violently. It was not a good match for Kash as his lungs worked hard against the monstrous machine. That night doctors told us that it was imperative that we give consent for Kash to be placed on ECMO, a system that takes the blood out of the body to oxygenate it & pump it back through the body. This would let his lungs rest & regain strength after the trials they had been put through. There were no other options. There was no way else to go.

Late Thursday night Kash came out of surgery strong & pink & resting, but most importantly his body was finally receiving the oxygen & drugs it so desperately needed. His ECMO team was awesome & his body & his stats were improving greatly. Everyone was happy & optimistic.

It was Friday afternoon when they found the bleed in his brain. We had to consent to another emergency surgery to take Kash off ECMO & then had to wait to see what the extent of the brain bleed would be. It was that night after being taken off ECMO that I was able to hold Kash for the second time. This time felt even better than the first. I had watched my baby fight as he was attached to all those machines & medicine for those days. I had cried in agony as he had undergone 2 major surgeries, praying for his safe delivery. Holding my son felt so good. I would bury my face next to his & just absorb his presence.

During the waiting we were determined to make memories with our son. We told him about his life & his home & his family of sisters & a brother. We gave him wet baths & read him books. We sang songs & encouraged him to get well. He had already gotten through so much & he was such a strong, little bunny.

By Monday morning we were told that Kash was not going to come out of this. His head was severely swollen from the accumulated blood pooling in his brain. We met for a final team meeting as many experts presented their findings & explained why Kash could not get better. It was going to be over.

But my husband John refused to let them take him that day, that Monday. It was Monday, April 18th, & that meant that it was Kash's 1-week birthday. We spent the day celebrating the only birthday we would have with our little boy. We wrote birthday wishes on his whiteboard in his room & bought a birthday card & balloon with Winnie the Pooh on it from the gift shop. A dear chaplain, Liz Berry, had been by our side during Kash's surgeries, & she joined us on our special day to baptize Kash. Her perfect words included, "A celebration of who you are, & whose you are. You belong to your mama & your daddy, but first also to God".  While I can not deny that there were a multitude of tears that day, there was also a great amount of love & happiness as we celebrated our son whom we would not be able to keep. It was especially hard to see that his autonomic muscle responses began returning after the heavy sedation had finally began leaving his body. I would hold Kash's hand & his fingers would move & his foot would raise up & go back down to rest. Signs of life in this sweet boy that would not be able to live.

We woke on Tuesday hurrying to Kash's side wanting to spend every last moment with him that was possible, knowing that at 11 am we had plans to take Kash to the outdoor garden on the 8th floor to say our goodbyes. It was on my first day at SLCH that John took me to the garden while the NICU was temporarily closed for another baby's surgery. He promised we would bring Kash there when he was stronger & doing better. Our NICU team was able to make this happen for us, though the day was forecast with storms & rain.

Right before 11, the clouds began to lift & the rain backed away. We took the elevator ride up to the roof with our little boy & his team. The garden had been closed especially for us & blankets covered a wooden bench for us. Kash's lines were removed before the trip up & the only thing left was to extubate. Kash was wrapped in a fuzzy blanket I had bought for him months before he was born & we held our son for the third & final time. We were not able to defeat PPHN. Our fight was over.

We found out months later that Kash's PPHN was too severe to recover. If the bleed had not occurred, Kash would still not have been able to recover. His lungs showed strong thickening & his heart, though normal, simply had to work too hard. There were no genetic disorders or any other condition that contributed to Kash's illness. This whole thing just was simply a worst-case scenario PPHN & nothing more.

Today we still live with Kash's memory all around us. We speak about him each day & keep him a part of our lives. My daughter Kendall “talks” to him on her Barbie phone & we tend to his resting place several times a week, just a country block from our house & across the road from the sitter. My son Alex got out of the car the other day to play a song for Kash that he had learned at school on his recorder. Kash has a memory wall that we continue to work on & that is a prominent part of our home now. A special hutch is almost finished that was designed & built just for Kash & more of his things to be displayed. I can not wait to add this to our home & have a special place for more memories.

I still do not know why all of this had to happen, but I get through each day by being lifted up in prayer by more people than I can imagine. We are preparing for a trip back to SLCH to donate hundreds of coloring books, crayons, & goodies that are all donated to honor Kash's birthday on April 11th. It is impossible to live inside that world & not have a place in your heart for the many, many kids that stay there each day.

We miss our strong bunny every single day. The NICU staff found a blue bunny identical to Kash's so that I could have one here with me, & he has his' that was with him when he was laid to rest. We are fortunate to live in the country & feel blessed each time we see a wild bunny cross our path. It's like a hello from our sweet boy & a reminder that he was real & he was here. One of the best things I can tell my husband is that I saw a bunny today. All my hugs & love with my Kash McKinley FOREVER!


Kash shortly after birth before transfer to St. Louis Children's hospital.


Kash and his mom loving on each other after coming off of ECMO.

The final goodbye (or till next time)


Heidi F said...

Love you, Sarah. Thank you for sharing this story about your precious little bunny.

crystal1972 said...

Love you and your family. Thank you for sharing your precious Kash with us.

JD said...

Beautiful story Bettina. I think it's so wonderful that you are sharing these little heroes stories!