Excitement to fear

We were in room about 5 minutes when the same nurse that preregistered me two days earlier walked into the room.  She began asking “Why didn’t you tell me?  Did you not think it was a big deal?” Mitchell looked at me confused.  His eyes said “what have you been hiding from me?” I looked at the nurse and said “What the hell are you talking about?” she flipped a piece of paper over that she was holding in front of her chest.  Her words were cold and angry “Don’t you know your baby is missing a kidney and may not have a bladder?” this is a report from your August ultrasound. Then she asked “Do you want to talk to your doctor?” I said “She better get here as fast as she can.”

The nurse left the room.  I called Deedee and told her what the nurse told us.  I told her I needed her to come back to the hospital.  While waiting for the doctor to arrive, I was angry.  I was angry at the hospital, the staff, the doctor, and god.  What if Hope dies?  What if this is the last time I get to hold her alive?  I thought “Why god?!?! First my mom, and now my daughter?  What did I do to deserve this?  What could I of done differently?  I’ve let Mitchell down.  I’ve let everyone down.  Why me?”  The doctor arrived within 15 minutes.  She walked in, sat down on the end of my bed.  I said “Why?”. She told me she knew I probably hated her, she accepted full responsibility, that she was sorry and she thought the baby was turned wrong on the ultrasound.  I asked what needed to be done.  She told me she needed to be mediflighted to a NICU equipped to take care of her.  I told her I wanted to be discharged with Hope.  I asked for a copy of all of mine and Hope’s medical records.  She told me there were hundreds of pages and they would cost us a dollar a page.  We couldn’t afford that.  She told me she was going to make phone calls and get paperwork ready for Hope to be transferred.  She left the room.

Mitchell and I cried together.  We decided he would ride in the helicopter with her so she would not be alone.  Deedee showed up. She was visibly upset.  I told her everything.  The helicopter arrived.  They had a full size gurney with an incubator sitting in the center of it.  They put Hope inside of the incubator.  We were only able to touch her through cut out circles on the side.  The medic said they had no room for Mitchell to ride because of the equipment they are required to carry.  Mitchell left at the same time the helicopter did.  He drove our cavalier.  Deedee and I watched the helicopter rise off the pad.  The red and white helicopter moved with grace.  They flew across the sky headed north.  Mitchell made it to the hospital for children in Oklahoma City just before the helicopter landed.  Deedee and I arrived 15 to 20 minutes after.

While parking we saw a man standing at a solid white van.  He was loading a gurney with a small, black body back lying on top into the back.  Deedee said “Not what I needed to see today!” I said. ”Me either.” I was paralyzed with fear.  What if that was Hope?  What if we went inside and they told us she didn’t make it?

We walked briskly into the building and then to the elevator.  The elevator doors slid open to the floor the NICU was on.  Mitchell stood in the lobby in front of the doors.  He told us the doctors said she got there just in time.  We were lucky she was still alive.  Just in time? Did they keep her so long at Ardmore hoping that she would die?  It wouldn’t be their problem.  They wouldn’t have to worry about liability, just grieving parents.  They sent a chaplain to my room.  Was he preparing to comfort us when she died?  I trusted that doctor, I loved her.  How could she put me through this?

Deedee, Mitchell, and I were allowed to go back and see Hope.  There were wires and cords everywhere on her tiny body.  She started out in the “Team one” nursery.  Team one is where they kept all of the more critical babies.  Hope was not allowed to have a bottle.  She was receiving all of her nutrition through her intravenously.  The first night in the NICU was spent doing x-rays and ultrasounds.  Most of the nurses and doctors were amazing.  Hope had many visitors while in the NICU.  Hope’s creatinine levels were dangerously high.  Her kidney was not functioning well. Her kidney was failing. The doctor said if we could not get her kidney function under control she would require dialysis until a transplant was available.  We asked how hard it would be to get a kidney if one was needed.  The doctor said kidneys are the easiest organ to get.

Ultrasound showed that Hope had a bladder.  Her kidney was so swollen and full of fluid that the bladder was mostly compressed.  The doctor had a thick German accent.  He was very hard to understand.  The day after she was born, the doctor told us she would need surgery when she got a little stronger.  As he was explaining I asked him to repeat himself four times because I couldn’t understand.  I started to ask a fifth time.  He sat down, pulled out a writing pen and drew a diagram on the thigh of his scrub pants.  Her ureter was attached at the bottom of her bladder, which created a dam.  Her urine was backed up in her kidney. The ureter needed to be brought to the surface of her skin.  She would urinate out of her abdomen for the first year of her life at least.

She was also dealing with high blood pressure.  X-ray showed that Hope was missing a bone in her right leg and she had an extra rib.  They were uncertain at first if she was missing the tibia or the fibula.  Several x-ray technicians took x-rays.  Doctors studied her x-rays.  I feared every time we went outside to smoke that she would be dead when we came back inside.  My aunt and I took photo after photo.  Deedee and I were standing next to hope.  I looked at her and said “If something happens to her, I don’t think I can live without her.” Suicide was on my mind.  I didn’t want to live without Hope.

I spent the night walking around like superwoman.  I was in pain but, I didn’t care.  I was not going to rest if that meant being away from her.  A doctor in the NICU said “What are you doing?  You just had this baby less than 24 hours ago.  Why are you walking?” I told him I was being a mom and I wanted to be with her as often as I was allowed.  He looked down on my legs.  “Have you noticed the swelling in your legs?” He asked.  I looked at my legs, both were very swollen.  Before I could respond he asked if I was in pain.  Was I in pain?  The pain is unlike anything I’ve ever felt, I was in the worst pain of my life.  My vagina felt like it was on fire.  My stomach, back, arms and thighs were all fatigued and aching.  My buttocks even hurt.  I was afraid I was going to be told I needed to go rest.  I lied.  I told the doctor that I was hurting but not too bad. Then he asked if I had filled the prescriptions my doctor gave me when I was discharged from Ardmore.  He looked surprised when I told him she didn’t give me any prescriptions.  He looked at Mitchell and I and said “Pain management is very important after childbirth.” He told me I didn’t have to go to the emergency room.  He asked me to please go over to OB triage in the adjoining building and let them see me.  I said “Okay”.  He told us that I should not be walking.

Mitchell got a wheelchair.  I reluctantly sat down.  I felt like I was taking advantage.  I wasn’t sick.  I didn’t have surgery.  I thought “Women have babies every day…  It’s not that big of a deal.” Mitchell pushed me in the wheelchair.  It was dark outside.  We kept finding locked doors and locked elevators.  We found a skywalk.  There was a sign displaying an arrow with the words “Everett tower” underneath.  Everett tower is where we had been told to go.  He pushed me in the skywalk.  This skywalk seemed to go on forever.  There was very little light.  The atmosphere felt creepy. Finally we reached the end of what felt like a tunnel.  Mitchell grabbed the doorknob of the door, and went to turn the knob.  The door was locked.  We were trapped.  We were sure of the door from the end we came from was locked also.  We were panicking.  We talked.  We communicated the most we had in months. We weren’t sure how we were going to get out.  Then the door opened.  A man wearing scrubs walked toward us.He asked if we needed through. We told him we were trying to get to OB triage. He swiped a card and opened the door for us. The first elevator we found was locked. We found an unlocked door to the left of the elevator. It was a stairwell. I stood up. Mitchell folded and carried the wheelchair. We walked down several flights of stairs. Finally we found the numbered floor the NICU doctor told us to go to. We walked up and told the staff that we were sent by a NICU doctor who recommended I be seen. The doctor working OB triage saw me quickly. He wasn’t real concerned with the swelling in my legs, because of the fluids I was given during labor. He told me I shouldn’t be walking as much and should allow myself to rest. The doctor told me he was prescribing Percocet and Ibuprofen 800mg for my pain. I told him no. He looked at me strangely. I told him I didn’t want medicine that would make me sleepy or make me feel high. I wanted to spend every waking moment sober, with my daughter. He told me the ibuprofen wouldn’t do that to me. He asked if I would take it. I agreed I would. We walked outside on the way back; we did not want to deal with locked doors and elevators. We went to the pharmacy and picked up my medicine. The medicine helped tremendously with my pain and I was still coherent. I complied with the doctor’s advice. Mitchell pushed me in a wheelchair.

Hope had been moved to the team 2 nursery for less critical babies. Mitchell and I spent most of the night at her bedside. The nurses told us if she was sleeping when we came in it would be best not to wake her. They explained that she wouldn’t burn as many calories while sleeping. She needed her calories. I spent a lot of time reading Hope’s chart. While reading her chart, I discovered a report from my doctor at Ardmore. I learned that I had low amniotic fluid during my pregnancy. I wondered why she didn’t tell me. I thought if I was more informed I could have been more prepared and given birth where they were equipped to take care of her. I felt angry that I was not given the option to make the best choice for her and myself. Nurses were giving Hope medication pretty often through her IV and a tube in her nose. She wasn’t allowed to have a bottle. She was being straight cathed often to check her urine output. Mitchell and I stayed in an old hospital room they called the “Parent Hotel” her entire NICU stay. Hope was really good at pulling her IV out, the leads off of her skin and the tube out of her nose. A nurse would be over to restart the IV or reinsert the tubes swiftly. As a parent it is very difficult to watch your baby be poked and prodded over and over.

October 27th an orthopedic surgeon came to Hope’s bedside. He told us that Hope was missing the Tibia bone in her right leg. He said the condition had a name. Tibial Hemimelia. I asked him to write it down, he did. He said she had other more critical things she was already dealing with. We would discuss treatment options in his office after she was released. I went down to the patient breakroom where I had access to a computer with internet. I searched “Tibial Hemimelia”. There were very few results returned in my search. There was a photo of a baby with Tibial Hemimelia on one of the pages I clicked. The baby’s leg looked identical to Hope’s. I knew without a doubt that Hope’s doctor was right. I read that the occurrence of the condition was one in one million births. She was already one in a million to me. I continued reading through the information on that specific page. The next paragraph talked about the most common and successful treatment options. The word hit me like a ton of bricks. Amputation. My brain spent the next five minutes repeating the word over and over. I wanted to be naïve. I didn’t want to believe it. I continued like I hadn’t opened that webpage. I believed the doctor would have several ideas when we saw him after she was released.

Day #2 in the NICU was the same as the day before; restarting IVs and reinserting tubes that Hope wouldn’t leave alone. Mitchell and I would go in together to change her diapers. Sometimes I would go alone. During the evening of night #2 nurses told us the doctor said we could try a bottle. The nurse brought us a tiny bottle of formula. There was 6mls in the bottle, equivalent to 1-2 teaspoons. Hope finished the bottle in two drinks. She was screaming she wanted more. It is torturous as a parent knowing your child is hungry and you can’t feed them. Each feeding Hope was allowed more formula. A nurse would straight cath her after every feeding measure the amount of urine left in her bladder. The amount was never what it should have been with the amounts she was eating.

Every day in the NICU was almost the same; Hope was being poked and prodded constantly. The next day Hope’s nurse told us he was going to bathe her and asked if we had any clothes for her. I was ecstatic; she could wear her own clothes. I excitedly went to our room and grabbed an outfit we had packed for her the night before I was induced. The nurse bathed and dressed her. I remember being almost intoxicated by the way she smelled. There is nothing that compares to the smell of a freshly bathed tiny baby.

I don’t remember every detail of every day. I remember feeling scared every day. I felt sad every time I snapped a photo, afraid it may be the last of her alive. I loved her more than anything. I also remember thinking the staff was hurting her all of the time with all the poking, sticking, taping, and prodding they had to do to monitor her.

On day 5 or 6, family friends Robin & Rick I had known my entire life encouraged us to take a break. They told us to come to their home for dinner. They didn’t live far from the hospital. We told them we would come over. Mitchell and I walked out to the parking garage. We got in the car; “My little girl” by Tim McGraw was playing on the radio. I lost it. I cried as the lyrics played. Mitchell cried with me. I told him I was afraid to leave her. He said he was afraid too. We agreed that no matter how hard it was to leave her, it wasn’t healthy to stay at the hospital all of the time. We needed a break. We needed a few hours of not having to watch Hope be hurt. We deserved to laugh. I can’t remember what they made for dinner. They were interested in how Hope was doing. I remembered we all laughed because one of their sons didn’t realize people are supposed to be born with two kidneys. He was just a couple years older than I.

We went back to the hospital. Hope was still alive. Hope had her first surgery (ureterostomy) at one week old November 2, 2006. The doctor gave me an estimated amount of time the surgery would take to complete. He told me I would receive a phone call when they finished. Mitchell and I smoked cigarettes outside while we waited. The estimated amount of time came and went. My phone didn’t ring. I only allowed an additional five minutes before I became antsy and scared. I went inside and sat outside the door I watched them take Hope through earlier. The door was marked “staff only”, I waited until a nurse or doctor walked out the door. I caught the door just before it closed. I walked into the restricted area. The environment was icy cold. A nurse noticed me almost immediately. She looked at me confused and asked what I needed. I said “I want to know my daughter is okay! I was supposed to receive a phone call and no one has called me.” She asked her name and I told her “Hope Smith”. She said “everything went fine. She’s in recovery now. We’ll take her back to her room in about thirty minutes. You can wait for her there.” We went to the NICU. We sat and watched the door impatiently waiting. When she arrived she was sleeping peacefully. She was still taking a lot of medications. She had to be straight cathered several more times to make sure her ostomy was working correctly, it was.

That evening Mitchell said he was ready to go try feeding and changing her by himself. I was excited! I envisioned him being the kind of dad that ran around the yard with his children, and had tickle fights with them in the middle of the living room floor. I waited in our parent hotel hospital room. He walked into the room 15-20 minutes later visibly upset. He told me he was trying to burp Hope when the nurse took her away from him and told him he was doing it all wrong. I was pissed! I told him I would take care of it as I walked toward the door.

I walked into the room where Hope slept. The nurse was sitting next to Hope’s bassinet with her back to me. As I approached her I could see that she was writing in Hope’s chart. I said “You! I believe we need to talk!” she looked at me shocked. I told her I didn’t appreciate her treating Hope’s father the way she did. I explained that I knew we were brand new parents and we didn’t know everything about caring for a new baby- especially one with medical problems. I told her it was her job to help us learn, not discourage us and tell us we were doing it all wrong. I told her I wanted Hope to have a different nurse for the remainder of the shift and if I had any more issues with her, I would be going to her charge nurse.

The days ahead were pretty uneventful. Friends and family came to visit Hope and checked on Mitchell and me. Trish, a friend I had made in the online chatroom reminded me that she was only an hour and a half away. She told me if we needed anything not to hesitate to call her. Hope was still being poked and prodded, much less frequently. Doctors and nurses didn’t act like Hope was as critical as she was before. I felt more peace but, I was still scared.

I went to Davis Police Department that week. My heart was breaking as I picked up my last check. I cried as I told my boss I wouldn’t be returning. I told him I was moving to Colorado after Hope was released from the hospital. I really needed my aunt’s support. He said he understood. He told me before I left I needed to go see the city secretary. I walked up to the counter where she sat. She pulled a white envelope from the drawer beside her. My first name was written on the front. She said “we collected this for you within the police department and city hall. You can use it for whatever you need.” The envelope contained several hundred dollars. I didn’t just have a job, they genuinely cared about me. I had a band of brothers and sisters who had become my family. They loved me and rallied behind me in some of my darkest hours. I will never adequately be able to verbalize how much they will always mean to me. I am so grateful I was blessed with them. Many of them are still in my life today, friends I will have forever.

On day 10, we were told Hope would be released in a couple of days. The doctor gave us a prescription for Hope, that he wanted us to get filled before her release. He explained that she could not be without the medication and that it meant life or death for her. Hope was released on day 12 at night time.

The three of us stayed at my grandparent’s home. Hope had 3-4 doctors’ appointments the following week and blood draws every other day. We went for an appointment with the orthopedic surgeon. The doctor showed us Hope’s x-rays. He brought in a second doctor. The two of them concurred that the only treatment option for her condition was amputation. My heart dropped. They wanted to cut my baby’s leg off. The doctor recommended the surgery be done when Hope was six months old. I couldn’t. I wouldn’t. I decided I would get as many opinions as I needed until a doctor told me her leg shouldn’t be amputated.

I needed my family’s support more than ever. We were preparing for our big move. My aunt talked to her friends in the area where she lived and found an amazing pediatrician for Hope. Hope’s urologist referred her to a urologist and a pediatric nephrologist at the hospital for children in Denver, 4 hours from my aunt’s town.

We spent our last days in Oklahoma visiting friends and family we wouldn’t get to see often after we moved. We had professional family photos taken of the three of us. We moved to Colorado before the end of November.

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