Why me Part 2
It’s really hard for me to describe the feelings that day. Pain emotionally and physically that were undeniably from somewhere that I never knew I could go or ever wanted to go. My heart was broken, or literally shattered, so much so that my stomach felt so twisted. I consumed every thought with Kaila and God, those two people….only. That was all I could turn to in my head.
“What do I do God?” “What is happening? What is going to happen? What do you have planned for her Lord?”
“Kaila I am so sorry baby, I am here, can you hear me? Are you in pain? God is watching over us, I don’t know what to do, but I am trying to make this all go away and bring you home.”
Beeping, Nurses, Doctors, the smell of sterile sheets and baby blankets, bright lights, taking everything in was the only thing I could do that would keep my mind busy. The Doctors then came through in their Navy uniforms covered by white coats.
“The doctors are making their rounds, and hopefully talk to you within the hour about Kaila,” the nurse said quietly. I had probably looked like a zombie and my eyes and nose were tainted red from crying and lack of sleep.
“Ok, thank you” I replied.
I noticed most of the doctors were younger than I would expect but I realized that they were military and still in training which made me nervous. I noticed them looking over charts, hovering over incubators. I thought it was odd there were maybe only 2 other parents there besides me. I could hear the doctors talking about nutrition, tube feedings, xrays, lab work and typical medical terminology. They were getting closer to where we were, I started to get sweaty palms, it was very weird. I couldn’t grasp what they would say, would they say she was fine, tests were normal, go home and we an monitor weight gain and nutrition next week?? I almost was afraid to hear the truth. So here it came….
“Hello Mrs Madrid (my name at the time), my name is Dr. Wood and this is my counter part Dr. Frye” Dr. Wood was young, probably mid twenties and a handsome young man, Dr. Frye was shorter and both seemed friendly.
“Hello” I said, my eyes started to tear, I was afraid to hear it!
“So, we looked over Kaila’s barium xrays and because of all the barium it was hard to tell what exactly is going on, in order to really see we have to perform surgery”
There it was…
“We think there is some sort of obstruction, we will need to test with pathology parts of her intestine to assure everything is working as it should”
“Ok …(God help me, I started to feel my heart racing, help me ask the right questions) “And if not? If everything isn’t working? What exactly are you looking for?”
“In some cases, we don’t always know until we go in and see, It could be there is a piece that is blocked and we need to remove it.”
I continued to ask the risks involved, how long the surgery should take, what would the outcome be if she was obstructed and if they removed any part of her intestines…what would that mean…the doctors turned to each other. Dr. Frye took over at that point, he complimented me on my questions. He said the pediatric surgeon Dr. Thompson would be in later to further look over the plan and give me more info. To me that just meant more waiting, more time of Kaila being in pain for all I know.
Please HURRRRRYYY! I felt like a kid bugging their parents by all the questions I was asking, “Are we there yet?” Are we there yet?” “Why?” How?” When?”
Dr. Thompson, the Pediatric Surgeon, was set to arrive after lunch. I could feel my pain meds start to wear off, and I could barely keep my eyes open, and barely hold Kaila. My in-laws arrived and came in to see Kaila. My mother-in-law was a nurse and right away was asking questions. My father-in-law was a coreman in the Navy and he understand the terminology also. I felt comforted that they were there but sometimes it was overwhelming.
Finally, the hour arrived. I was pumping breast milk for Kaila in a separate room and my parents had arrived from out of town. I let them visit with Kaila before I came out as I figured I would let the nurses inform them…if you knew my family you would know why. My mom came into the breast pump room where I was consumed in thoughts and exhaustion. I don’t know why but another wave of tears came over me. I got up and gave my mom a hug as I began to cry. I tried to hug my mom, but it was always very hard as 5 seconds was already way too much for her to handle. She patted me on the back and asked “What’s wrong?”…..Excuse me??!! What’s wrong??!!! Not only was I emotional at that moment, but to hear her say that without any thought made me want to scream! “A soft voice turns away wrath”
I withheld anything negative I really wanted to say, so I replied barely being able to speak beyond my swell of tears, “I don’t know what is going to happen to Kaila. I’m scared!” My mom gave a weird grin, she said, “Well…I’ve been through worse.”
Really? REALLY???!!! Ok I am just going to forget you said that because when you have anything important to say then maybe I will give it some thought. So all I could say was, “Ok, thank you for coming.” She left back to the waiting area and said she would meet me out there when I was done.
I sat back down quietly and continued to pump. I had to focus on not being stressed as I would lose my milk, I had to be sure Kaila got this breast milk, because that was the only thing I could physically do. I wanted to go home to Keone and make sure he was ok. I had no idea what was going through his little head but I felt so bad being gone for the whole day and hours at a time. Just barely at the age of 5, I am not sure, but I think it affected him more than I know at that time. I could only hope he understood that I loved him just as much and that Kaila needed me there and I would do the same for him.
The Surgeon arrives:
Dr. Thompson arrived, salt and pepper gray but confident looking man and I could tell he was respected, yet he smiled at everyone quietly. I felt at peace meeting him, and I felt God placed him there for us. There were other families waiting to talk to him but he approached us first. “Mrs. Madrid, hello, I am Dr. Thompson, it’s nice to meet you.”
“Yes Hello, we have been so anxious to meet you, thanks for coming to see us first, we really appreciate it.”
“Well, not always can I do that in some cases but today I am glad I could.”
“So, were you able to figure out what is going on with Kaila?”
“Actually, in cases like this we have to perform invasive surgery to test her bowels and see what is actually going on. We would make an incision to take a look inside while taking samples of her intestines to send to pathology STAT. While she is under we test all the way down to the colon to assure that her intestines have what we call gangleon cells. These are nerves cells usually present in all healthy bowel….”
I dreaded to hear what happens next….
…”if the cells are not present we actually have to remove that section. This is called Hirscprung’s disease.”
We continued to ask questions, how long was recovery, surgery, what if etc. Basically they said depending on the amount of the affected bowel, she may or may not have an ostomy for several months until she grows healthy bowel, then we can reconnect her bowel and remove the ostomy. I went in knowing worst case scenario. On top of it all, the results came in from Kaila’s DNA test confirming that she had Down’s Syndrome. Dr. Frye had given the results to my in-laws in the waiting room before I had arrived back from lunch. I was devistated that the Dr. didn’t tell me first. I questioned why and the doctor assumed since we were so close that it was ok to tell the results to the grandparents. After careful consideration, he knew he had made a mistake and apologized.
The results sunk in the pit of my stomach and for him to not notify me first made it gruelling. I felt insecure that he overstepped my boundaries as a parent. “Love is neverending”
I went back in to pump more breast milk. I sat quietly…alone…”you are not alone, never alone, set above this all, you have no idea the task at hand is not yours to question”
I had no more tears to cry that day. I slowly felt numb emotionally. Just walking in a twilight zone and I wanted to be invisible. The post partum was setting in but I was fighting it. In came the nurse with papers for me to sign. Consent forms, preferred religion, emergency contact info, description of my rights, visiting hour information.
“They will be scheduling Kaila’s surgery for first thing tomorrow morning, the doctor will talk to you more prior to surgery, do you have another other questions?” The nurse was so gentle with her explanation, it lulled my emotions and I was thankful for that. Even though I had Kaila’s father there, Keone, and my in-laws, nothing can describe the burdens I carried within. In fact, in writing this memory, I don’t recall interactions with anyone after this…only Kaila and the medical staff.
Morning of surgery.
I woke up angry again. I knew it was post partum and separation anxiety from the baby. “Be blessed in what is about to happen” Driving to the hospital, I felt different now. Riding with Kaila’s dad, I realized that this relationship was not what God wanted for me. “Great are the plans that I have for you”
We arrived at the hospital walking straight to the NICU, I said nothing and went to the usual handwashing and gown procedure, went straight to Kaila and picked her up and held her. “God I have to know this is your plan, please keep her safe” I kissed her hands, her head, her feet, her forehead and took a deep breath of her scent and began to cry for again I had to let her go…..