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I’m not sure why we are played the cards we are played. Not sure why some families have 10 healthy kids, while others are unable to have kids, or have kids born unhealthy. I’m not sure why I was able to bring my baby home from the hospital, while others don’t get to. I’m not going to say our experience with Brock was any harder or easier than the next. But it is ours. An experience that belongs to Ryan, Brock, and me. It is a part of who we are and what makes us, us.
This is Brock.
Brock is an energetic, lively, fun loving, smart little guy. He is a fantastic big brother and a sweet son. Watching him, you would never know that at one time, he was fighting for his life. Brock was born in May of 2008. He was 5 lbs 2 oz, and seemed big for a premature NICU baby. He did get below 4 lbs his first week of life, but weight was never a battle for him. Although he was about 6.5 weeks premature, prematurity was the least of our worries.
“Your baby has a birth defect, he will need to have surgery after he is born and will likely spend a few weeks in NICU.” These were the words we heard at our first sonogram.
NICU?? What on earth is that? I had never heard of NICU. I was 19. I hardly knew anyone who even had a baby, and didn’t know any who had a baby with a birth defect. I knew that there were probably some babies who had health problems at birth, but I had never personally known of someone who had one and talked about it.
Our doctors did their best to prepare us for a NICU baby. Although we knew what to expect with Brock, we never really understood what it would be like. I don’t think anyone can fully understand what it’s like to have a NICU baby unless they’ve actually had one. There are so many things to figure out for a NICU stay. Things like paying the bills, where you will stay, what you will eat, how you will get to and from the NICU, scrubbing and wearing hospital gowns and, for me- learning to use a breast pump, learning how to change out oxygen tanks, give medicine, breathing treatments, dealing with a heart and breathing monitor.
Monday, May 5th I went to an Engineering final, and then we headed towards our last sonogram with Brock. Due to a concerning ultrasound, the doctor told us that I would be scheduled for a C-section the next day.
That wasn’t what I wanted to hear. I wanted to give birth naturally. I knew that more than likely if I had one C-section then I would never be able to have a baby naturally. I almost felt as though I would be less of a mother if I missed out on natural birth. But I had to just get over that, if a C-section would be what was best for my baby then a C-section it would be. The doctor told us to go home, pack our bags and come back to check into the hospital to be monitored overnight. We called our friends and family to tell them that our baby would be coming the next day and to ask for prayers to start coming.
Brock was born weighing 5 lbs. 2 oz. I didn’t get to see him. At all. Ryan did- he said basically all he could see was baby Brock, and intestines. The nurses took Brock, wrapped his intestines, intubated him and wheeled him off to NICU. Ryan was able to stay with Brock as they hooked up all the monitors, put the NG tube in (to drain his stomach), cleaned his intestines and put them in the bag to hang over him. There was one isolation room in the NICU we were at, and Brock was in it. I didn’t think much of it at the time, but I now feel as though having the isolation room would be a life saver for Brock later on.
After I left the recovery room, I begged to go to the NICU and meet Brock. The nurses were hesitant but they let me in. I scrubbed up and Ryan wheeled me into the isolation room where Brock was. I don’t remember much, just seeing him, then getting hot and almost passing out. (If you have ever had a C-section then imagine going out and about 1 hour after-it was physically and emotionally overwhelming.) I gave in to the nurses requests and went back to my room while Ryan took our family in to meet Brock. Brock was able to breathe on his own so they took out the ventilator.
Back in my room, the nurses brought me a breast pump and I was somewhat left to figure it out on my own. Keep in mind I am a 19 year old college girl, and I have never seen a breast pump. Nor was I a well prepared, well versed “crunchy” type momma who has studied breastfeeding and pumping. I still give Ryan a hard time because when he came back to the room and I was trying to figure it out, his “coaching” side came out and all of a sudden he became a lactation specialist. Ha! Anyways we got it all figured out and that pump became my friend every 3 hours for the next 7 weeks. Brock couldn’t have ANYTHING in his stomach. He was on TPN and Lipids. The doctors told me that it would be best for Brock for him to have breastmilk once he started feedings. This meant that I had to pump. In just a few weeks, I filled up my space in the NICU freezer, the Ronald McDonald house freezer, our home freezer, and part of both mine and Ryan’s parents freezers. I ran out of space and eventually just started flushing the milk down the toilet. Pumping was a huge personal challenge. I hated it. Hated knowing that my precious milk would never be used by my sweet baby. Hated having to wake up in the middle of the night, only to look at that horrid breastpump instead of my baby. I hated it so much that I eventually started to skip pumping sessions and developed a bad case of mastitis. The doctors quickly encouraged me to get my act together and stick to the schedule. Eventually I donated a large portion of the milk, and saved the rest for a few months. It ended up just being poured down the sink.
THOSE FIRST DAYS
When Brock was 3 days old I got to do something that many parents take for granted. I got to change his diaper. I hadn’t changed any baby diapers. Ever. My first diaper I changed, was on a baby with tubes from his head to his toes. I just remember being really nervous and having absolutely no idea what I was doing, but I was getting to interact with my baby and there was no way I was willing to miss out on that!
We were allowed to go see Brock every 3 hours, but in between he really needed to rest. For almost a week we couldn’t hold him because of his intestine bag, but every day gravity was pushing his intestines back into his little body. Also, every evening the pediatric surgeon would come in and give the bag a quick squeeze, and tie it off a little lower. It was a gradual process- if they would have pushed all his intestines back in too soon, it would have put too much stress on his other organs. His lungs and heart weren’t used to having to share that space. His little body had grown without the intestines in it which means that his body had to stretch out in order to make room.
I had another one of those “pass out” moments one night. The surgeon had come to squeeze and tie. Somehow when she squeezed, the bottom of the bag came out of Brocks abdomen, and out popped those intestines. Yes, they literally were laying on top of his legs. We saw them. It was not a fun night and isn’t a good memory. It wasn’t as much the intestine part that was hard to see. It’s the fact that a lot of times when NICU babies get upset their heart rate sky rockets and there is nothing you can do about it. My poor baby would have to just lay there screaming and in pain, and there was absolutely nothing I could do. I couldn’t hold him, couldn’t talk to him, and couldn’t touch him. Even the slightest sound or lightest touch made things even worse.
The highlight of our day would be the small things. Things that I would have otherwise taken for granted. Changing diapers, taking his temperature, changing his bedding, and any form of interaction. I was recovering, and pumping. Ryan was going back to work. Family and friends were coming to visit and provide us support. On the 5th day, Brocks intestines had gone in enough to just wrap his belly instead of hang a bag. I got to hold my baby. Best feeling ever. Best mother’s day present I could have ever asked for. The next day Brock went into surgery to have the hole repaired and we thought things would only go up from there. We had figured Brock would be in the hospital for 4-5 weeks. Brock had a few minor recovery issues like dealing with the ventilator and then c-pap, but we thought that we were right on track.
We started praying for poop. Poop meant that his intestines were working and that maybe we could start putting milk in his belly. And the faster we could feed him, the faster we could go home. Our main concerns now were getting his breathing where it should be, and we knew there still might be a little kidney concern. But other than that, he seemed to be doing great! We waited 2 weeks with no poop. So the doctors decided to try and give him some milk through a feeding tube. Lots of times you hear “step forwards, steps backwards” in regards to healing. This began a step back for us.
OUR STEP BACK
May 30- My little brother is graduating high school, 3 hours away. It was a tough decision, but I really wanted to go. I left Brock at about 4pm and Ryan and I headed to graduation. This was also the day the doctors decided to attempt a feeding tube. Brocks first feeding was that morning, and by the time we left we still had no poop, but instead had some belly swelling and fever. The doctors ordered an x-ray just to check things out and they said they would call me with results. We talked several times on the phone that night, and the results had been somewhat inconclusive and Brock had showed no change.
May 31- That morning, I called the NICU to see how Brock was and got our nurse. She seemed a bit upset, and told me that things weren’t going good. She said Brock had a rough night and an emergency surgery was becoming a likely reality. She said we should probably head on back soon and that if they decide to do the surgery, then we would be getting a call from the doctor. I started praying for my phone to just not ring. If it didn’t ring, then that meant things were ok and the doctors didn’t decide on surgery.
An hour into our drive, we got the phone call from the doctor. “Hurry back as soon as you can. We will be doing surgery soon, but we really want you to be here to sign off on it. The X-Rays are leading us to believe that Brock has a hole in his intestines.”
Cue the car flashers, and a speed of 95mph.
When we got back to the hospital, all I remember was Brock looked absolutely terrible. He was so swollen. He had a high fever. In just one day, he had gone from being awake and aware and even smiling, to just completely out. I remember seeing a family walking by taking turns in groups of 3-4. Their baby had passed that day, and the family was coming in to say goodbye. I just knew that my baby would be next. I also remember Ryan and I praying over him in his bed and then we left our baby there and went into the hallway.
I have never felt a sense of peace like I did in that moment. When we got into the hallway, we were met by about 30 people, family, church, friends had all come to support us. We had a big group prayer led by our preacher. It was amazing. I knew at that moment that I had absolutely no control over the outcome. His prayer was overwhelming, and while I was scared out of my mind at what the next few hours would hold, I could feel God’s presence.
We had an amazing pediatric surgeon and a great anesthesiologist. Right before the surgery, the anesthesiologist called us in to see if he could pray with us and the team performing the surgery. Amazing!
While his intestines didn’t end up having a hole in them, they had become kinked from the scar tissue and nothing was able to pass. However, the surgery took a little longer than expected. This was because when the surgeon got in there, he noticed one of Brocks kidneys. He really thought it should be removed, and called a urologist to come offer a second opinion. I am so glad he did, they decided not to remove it. I really think that if they would have removed it, Brock would have dealt with even more recovery complications, and might not have made it through.
When Brock got back to the NICU, things were rough. We couldn’t talk to him or touch him. Any little noise would set him off and his heart rate would skyrocket, while his breathing and oxygen levels would drop. He was on a ventilator and our new game plan was for him to heal and recover from surgery, and then restart our prayers for poop.
Recovery was hard. After a few hours the doctors and nurses realized that Brock couldn’t handle being in a room with other babies. Any noise or beep, or even hushed talking was dangerous for him. They were able to move him back into the isolation room. His lungs started fillng with fluid.
SCARIEST NICU MINUTE
I nightly called to check in on Brock. One night, I called and asked how he was and they said “he has had a rough night. We had to bag him.” Well, I had no clue what “bag him” meant. I fully expected to walk in the next morning and see him in a bag. I had seen other babies who were wrapped in what looked like saran wrap, so I thought I would find Brock in something similar to that. I was so wrong. The minute I walked in his room, the nurse started screaming “RESPIRATORY!” She had just rolled him to the other side (they would have him switch sides so that his left and right lungs could alternate being filled with fluid, and being used for breathing.) When she rolled him over, both lungs filled with fluid and the ventilator stopped working. His breathing, heart rate, and oxygen levels were all approaching 0 when the nurses had me leave the room. All I could do is pray and watch from the hallway as they “bagged him.” I quickly learned that bagging him meant they had to use a bag to breath for him because the ventilator couldn’t. The seconds felt like hours, but they got him breathing again.
THE ROAD TO HOME
We had a few other minor setbacks, mostly dealing with high blood pressure due to his kidney, and his kidney itself. At about 6.5 weeks, his PIC line failed, and they couldn’t get another one in. Before they surgically put one in, they decided to let me try to nurse him for the first time just to see if he could handle it. HE DID! Since he was able to nurse, the PIC line wasn’t needed. He did great! And the doctors ushered us out the doors when Brock was 8 weeks old. We also got to keep our chair! We lucked out that the week we were leaving was the week that the NICU was getting new recliners.
BROCK SINCE NICU
Brock’s kidney ended up failing, but I am told there are lots of people who live with just one kidney and don’t even know it. He also doesn’t have a belly button, but who needs a belly button anyways?? We have been told twice that he could potentially have cancer, both were from NP’s who should never have told us that. Brock came home on oxygen (for 6 months) and breathing treatments (for 8 months) along with 3 other medicines. He was hospitalized again at 15 months for 5 days, we never figured out why, but I think it was something to do with his immune system. And he has only needed one other minor surgery. We’ve been told that gastroschisis is one of the best birth defects to have because it is fixable.
The first year of Brock’s life was so hard for Ryan and I- college-aged newlyweds, but I think it made us stronger people and a stronger couple. We are so so thankful to everyone who was a blessing to us during that chapter of our lives. Everyone was so supportive- our doctors, nurses, RMH staff, friends, family, visitors, and especially everyone praying for us and Brock.. The prayers were definitely felt. I am so thankful that God answered our prayers with a great big YES!
If you have a NICU story you’d like to share, I would love to post it! Feel free to email it to me!