Introducing Atticus Grant Benson: Our Story

When I imagined sitting down and writing out my son's "birth story" I couldn't have known that it would be so drastically different than what I had anticipated. It's taken me a few weeks to write this down because in all honestly, the last three weeks have been a whirlwind and some of the hardest of my life.

Atticus Grant Benson was born July 15th, 2015 somewhere around 9-11 PM. When I get the birth certificate, I'll have an exact time but in the midst of all that happened it's hard to remember all the details. He was a sturdy 8 lbs 6 oz and 20.5 inches long, and this is our story.

I had been experiencing some pretty intense back pain for several days, and this day was no different. On July 14th, a Tuesday, around 10:30 PM I decided to take a hot shower to try and relieve some of the pain in my lower back. This pain had been keeping me up every 40 minutes or so at night for several nights. As I stepped into the shower felt a gush, and suspected my water had broken. I hadn't felt anything like my Braxton hicks contractions so I decided to sleep through the night and if nothing had changed in the morning, I would go in and confirm with my midwife. Around 11 AM that next morning, July 15th, I went in and confirmed that my water had indeed broken. I was 38 weeks and 3 days. At this point I still wasn't experiencing what I expected contractions would have felt like. The midwife suggested we try some homeopathic options and castor oil to try and get things moving. I'm not a huge believer of homeopathics, but I was open to at least giving it a try. She inserting an IV lock and started my first round of antibiotics as I was GBS+, fed me the oil and placed something under my tongue, and sent me home. I had called Garrett to let him know that we would be meeting our baby boy that day, and he came home from work around 3 PM. We tried walking around, and climbing some stairs to try and get things moving, with no luck. At 4 PM, we returned to the birth center for the second round of antibiotics. The midwife suggested we try to physically induce labor at this point. After examining me, and bringing in a second midwife to try and confirm the baby's position, they informed me that they weren't sure the baby's head was facing down and wanted to do an ultrasound to confirm as they cannot deliver breech babies.

It was after 5 PM at this point, so after pulling some strings she was able to pull in a friend who worked at Utah Valley Regional to do an ultrasound for us. We drove down, praying the whole way that baby was in a good position so we could have the birth we had been planning from the beginning.

We met with the ultrasound tech, and held our breath as she began to scan my belly. She confirmed that the baby's head was head down, and Garrett and I felt a wave of relief as we celebrated in that brief moment. However, our victory was to be short lived. It slowly dawned on me that something was off when the midwives and the ultrasound tech did not share in our joy, and I heard one of them mentioning softly to the tech, "it's hydro, yes it looks like hydro". My heart slowly began to sink as the realization hit me, something was wrong. Trying as best I could to prepare myself for the answer, I finally asked aloud "Is something wrong with him?" Yes. Yes, something was wrong.

The hardest part about this time was that Garrett and I were given virtually no information, and were left to speculate about what we saw next. The ultrasound tech pointed out two large, black spots in our baby's brain. She told us that he had hydrocephalus, or fluid on his brain, and that I also had excess amniotic fluid. The fluid in his brain has caused his head to become larger than normal. We asked if this would affect his development, and she replied yes. That was all we knew for the next hour.

I couldn't bring myself to look at Garrett. I felt so many emotions all at once. Fear, a lot of fear that I was going to loose my baby. Guilt, was it my fault? What could I have done differently? I had been so careful, not even taking a tylenol my entire pregnancy. Why hadn't we seen anything on the 20 week ultrasound? Panic, what did this mean for our baby? Was he going to be able to survive outside the womb? I stared up at the ceiling and tried to hold back my tears as my heart broke. Broke for my little baby, and for my husband. I felt so broken, like I had failed. This was what my body was designed to do, and I had failed. All I wanted to do was to bring him into the world safe and healthy, and I couldn't.

We left the ultrasound room and went to move our cars closer to obstetrics and gynecology. Finally having a moment alone in the car, Garrett and I were left to face the reality of what was happening. It hit us both hard, and we both wept openly for our little boy. Through tears, Garrett was the first to speak, "We'll love him no matter what, it will be okay."

As we walked hand in hand down the hall I couldn't hold back my tears. I cried as I was shown to a room, and instructed to put on the gown. The nurses asked if we wanted a moment alone, which we accepted. Garrett helped me with my clothes, gave me a blessing, and then we called our parents to let them know we were being admitted to the hospital. Garrett's parents would arrive about a half hour later, and mine later that night.

As the nurses began to monitor my belly, the midwives who were still with us pointed out that I was having contractions. I was shocked, because still wasn't feeling anything in my stomach. Then I realized, my back pain was my contractions and correlated with the spikes on the screen. I speculated later, that I had actually been in labor for several days.

We met with the doctor, who informed us that while vaginal delivery is always preferred, because of the hydrocephalus and baby's head size he was concerned what the trauma of a vaginal delivery would do to the baby, who still had not settled into my pelvis. Our plan for delivery had been a natural, unmedicated vaginal birth at a birthing center. When the doctor said the word cesarean, it didn't sink in. Everything had changed so fast it was hard to process. From the time we saw the ultrasound to the time I was on the table in the operating room, it was only about an hour.

Garrett's mom and dad arrived and Garrett and his father gave me and baby another blessing. My contractions were becoming more intense now, but I was able to walk myself to the operating room. A C-section was never in our plans, so I had not prepared myself for the experience. The OR was very cold and very white. I began to shake violently as I received the epidural and my wrists were strapped to the table. Garrett sat at my head and stroked my hair as the team prepared for surgery. Even when the epidural took effect, my upper body continued to shake violently through the entire procedure. I tried to hold back tears but could not. I had no idea what was about to happen, if we were even going to get to meet our baby boy. The NICU team stood by watching and waiting to take the baby should anything go wrong. One of the doctors asked me if I'd received a screening for gestational diabetes, as he suspected I may have had it due to the excess fluid.

I remember the moment we heard him cry, and I have never been so happy to hear a baby scream. I looked at Garrett and he asked me what I wanted him to do, stay with me or go with the baby. I told him to go with baby Atticus.

Garrett left the room and the doctors began to finish the surgery. As I mentioned, Garrett and I weren't given much information about our baby boy's condition. So when I saw Garrett come back into the operating room carrying a beautiful baby boy, I was shocked. He was so beautiful, I wish I could have held him. I remember asking in disbelief, "Is he okay?" Garrett put his little face next to mine, and all I could do was rub my nose against his.

One of the doctors said very calmly to me, "You're losing a lot of blood and your uterus is not contracting on it's own. If I can't get it to contract, I'm going to have to perform a hysterectomy." Not knowing what else to say, I numbly replied "Okay." He performed a suture where they roll the uterus up like a sleeping bag to manually contract it, which was thankfully successful. I lost 2 L of blood, during a c-section a woman usually looses about 500 ml. I know that I was blessed and that the Lord was watching over me during this time. I should be able to try for a VBAC (vaginal birth after cesarean) in the future.

They took Atticus back to the nursery while they moved me from the operating room to my recovery room. We were counting our blessings, our baby boy was okay. He was breathing, and eating, and pooping just like he should. They let him stay with us that first night, offering at one point to take him back into the nursery so we could get some sleep. We declined because all we wanted to do was be with our little boy.

I wouldn't have had much sleep anyway, the nurses came in first every 15, 30, 60 minutes, then 2 hours to push on my uterus. They needed to make sure I was clotting enough and that my uterus was contracting. Even with the pain medication, this was the worst pain I have ever felt. One of the nurses was an angel and told me that I could dig into her arm with my nails if it helped. Strangely, it did. In addition to the nurses I had someone coming in to draw blood every few hours to check my hematocrit levels after losing blood.

Having him with us that night was a blessing. Garrett slept on the pull out bed and would change his diapers, and bring him to me to nurse. We got to be his parents that night and things felt almost normal for a little bit. The next day, we received a call from the NICU, letting us know they would be taking him for observation as babies with hydrocephalus are at risk of having sleep apnea.

Garrett went with him while I slept for a few hours. The nurse wheeled me up the the NICU later where I saw Garrett, sitting exhausted in a chair holding our baby boy. Atticus had an IV tube and monitors stuck all over him. The nurses let me know that his blood sugar had dropped during the night and they had to give him an IV line to help stabilize it. I nursed him and we cuddled for a little bit. We later realized that due to the blood loss and stress, my milk supply was very low. Ultimately, in an effort to get him out of the NICU as quickly as possible and bring his blood sugar up we ended up placing a feeding tube down his nose though which donated breast milk was pumped directly into his stomach.

This was a hard decision for me because I had wanted to nurse exclusively so badly, but couldn't. Like many other things that had happened, I didn't have a choice and had to do what was best for my baby. I didn't want to give up completely, so our routine became that the nurses would call me in my room everytime he would wake, which was about every three hours, Garrett would wheel me up to the NICU where I would nurse him for a few minutes, then pump while Garrett held him and he was fed through a tube. I met with several lactation consultants during this time, and was told later by my mother-in-law that one of them said to her that I would never be able to nurse. I am so glad they didn't say that to me, I was already pretty discouraged.

Atticus was in the NICU for five days, during this time they did an ultrasound on his head and then decided to do an MRI which he was sedated for. We met with the neurologist who let us know that he had been consulting with the neurosurgeon at Primary Children's Hospital. He believed that there may have been a small hemorrhage that happened sometime in utero, and that this may have caused a blockage in the duct that drains the ventricles of the brain, causing the hydrocephalus. This was the first bit of real information about his condition that we received. The good news, was that while in the NICU, his head hadn't gotten any bigger.

Initially, the doctors at Primary's wanted to transport Atticus via ambulance. The neurologist at Utah Valley however, didn't feel that was necessary and felt like if we could get him off the IV, and onto a bottle that he could discharge us after which, we could meet with the neurosurgeon at Primary's as an outpatient visit in a few days. On day four, it was time to discharge me. This was a hard time for Garrett and I because there were no available rooms for family members of NICU babies. We had been so diligent at staying as close as we could to Atticus, and now we had no choice but to go home for the night. We were both exhausted and emotionally spent. One of the lactation consultants basically had to kick us out. I was only able to leave because Garrett's mother came up to the hospital and spent the night sleeping in a chair next to Atticus. She made sure that he was being bottle fed so that we could take him home. I couldn't believe how difficult it was to leave that hospital that night, scarred and empty handed. Ultimately, it was the best thing we could have done. Once at home, I was able to relax and my milk began to come in more steadily.

Atticus responded well to bottle feedings and once he was successfully able to do so, he was discharged and finally able to come home. I would nurse him and supplement with formula, then pump to try and bring in my milk supply. Atticus has been home for two weeks now, and has been exclusively nursing for about a week.

We had been told that he would be meeting with the neurosurgeon at Primary's the next Tuesday, which I was never comfortable with. I didn't feel like I knew enough about his condition and was afraid of waiting that long after they had initially wanted to transport him in an ambulance. We brought Atticus home on a Monday, and Wednesday was his first appointment with his regular pediatrician. At the appointment, Atticus' head measured two centimeters bigger which immediately had me concerned. All babies head's grow, but his was growing at a faster rate which indicates more pressure on the brain. His fontenelles are larger and more open to compensate for the increased pressure. This is why hydrocephalus is less scary for infants than for adults. They have more room to stretch. I had also noticed that his eyes were doing what is called "sundowning", another indication of increased pressure. I pushed for a sooner appointment and the pediatrician contacted the neurosurgeon at Primary's. We went up for an appointment the next day.

The surgeon let us know that he was concerned and felt that Atticus would need surgery. However, we met with him on his last day before moving to Canada. He said that he was 90% sure that we would do surgery the next week and so he booked the OR. The next week we came back for a follow-up with his partner, the surgeon who would ultimately be doing the surgery. This time, this surgeon wanted to wait some time and do another MRI to get a better picture of Atticus' condition.

So this brings us to the now. Atticus is home, and we have an appointment for an MRI at Primary's on Tuesday after which they will monitor him for 12 hours because he is so young. We then have an appointment with the neurosurgeon after to determine if they will want to admit him for surgery that day, or take another course of action.  We have two options at the moment, either they can do a shunt system which will likely need another surgery by the time he is three, or an endoscopic third ventriculostomy. The second option is more of a one time treatment, but has a significantly lower chance of success due to his age.

What his future will be, we do not know. There is a chance he could have developmental delays, or that he could be completely normal. The thing with hydrocephalus is that it can be caused by many different things, and so it's hard to tell what the outcome will be. We just have to wait and see with time.

I mentioned to Garrett the other day, you don't go through something like this and come out unchanged. This has been and still is one of the most humbling and difficult trials I have gone through. I am so grateful for the atoning sacrifice of Jesus Christ and the knowledge of the plan of salvation. God will never give us something we cannot handle, with his help. He gives us the experiences we need to help us grow.

"Don't be gloomy. Do not dwell on unkind things. Stop seeking out the storms and enjoy more fully the sunlight. Even if you are not happy, put a smile on your face. "Accentuate the positive". Look a little deeper for the good. Go forward in life with a twinkle in your eye and a smile on your face, with great and strong purpose in your heart. Love life."
           

                                                                   -Gordon B. Hinckley