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Wednesday, December 3, 2014

My Baby Had Major Surgery Twice. Here's What I Wish I Had Known The First Time.

The second surgery was exactly 2 years ago today.



It was the most exhausting day of my life so far. I suppose that's why it has taken me two years to finally write about it.

I was almost five months pregnant with our third baby, Joe. Our second son, Caleb, was 19 months old. My husband had been out of town on a business trip the night that Caleb got sick. Caleb acted completely normal during the day so when he started throwing up overnight I assumed that the dreaded stomach bug had hit our house. We didn't sleep at all that night so I was quite relieved when Brandon, my husband, arrived home the next morning. We all cuddled with Caleb and tried to keep him hydrated.  Poor baby was miserable.




He was still rough the next day--Saturday--so we called the nurse hotline. They assured us that a terrible stomach bug was going around and he would probably be feeling better soon. They said to focus on keeping him hydrated  and to bring him to the ER if he went eight hours without a wet diaper. He cried for water and threw it up every time we gave it to him. He had a wet diaper every 6 hours so we decided to give it another day. By the next night he had gone 8 hours without a wet diaper and was looking dehydrated so we headed for the ER. I took him because I thought he would feel the most comfortable being with his mommy. Brandon stayed home with our oldest son. I expected that Caleb would be given a bag of fluids for dehydration and that we would be on our way back home in a couple of hours.

In hindsight, I would have let Brandon take Caleb in. We would have taken him in a day earlier instead of trying to wait it out. We would have gone straight to the Children's Hospital. At the time, I thought that taking him to the ER at the local hospital, where his pediatrician has privileges, would be the best plan.

The ER was packed when we arrived. I was optimistic about it because I thought, "I have a screaming baby who is going to puke all over the place. Surely, they will not keep us waiting too long. " Yet, wait we did. When they checked us in the nurses gave Caleb medicine to quell his vomiting, but it didn't work. He threw up all over himself and all over me. He threw up all over the changes of clothes I had packed for both of us. The receptionist apologetically kept bringing me more hospital gowns to bundle Caleb up with. Everyone in the waiting room stayed as far away from us as possible. It was 1 or 2 am when we finally got a room. His little veins were so tiny and dehydrated that we were passed from nurse to nurse until the head nurse in the pediatric unit finally succeeded in getting an IV in him. He started fluids, but by morning he was still not looking any better. Our pediatrician arrived early Monday morning and broke the news to me...

"Due to his history, I think the best course of action will be to transfer you to the Children's Hospital. I'm afraid he will need surgery again."

I tried to be brave for Caleb, but I'm sure I bawled. Surgery. AGAIN. Caleb was born with an undetected herniated diaghragm. When he nine months old he became very sick and the hernia was discovered. As soon as it was detected we were transported by ambulance to the Children's Hospital where Caleb had an emergency surgery that successfully corrected the problem.



Once again, the familiar transportation ambulance arrived. I had to sit in the front while Caleb rode-- crying for me--in the rear of the vehicle with the medical team. At the Children's Hospital they quickly took xrays and confirmed that Caleb needed surgery. Scar tissue from his first surgery had completely blocked off a section of his intestines. They would perform surgery in just a couple of hours to remove the intestinal blockage.

At this point Brandon had dropped Kai off at his parents house and met me at the Children's Hospital. I let him take over Caleb's care. My mom picked me up  and took me to her house to sleep during the surgery. It seemed terrible to sleep while my baby was in surgery, but at that point I could hardly walk straight from exhaustion and I knew that Caleb would need me most when he woke up from the surgery. I slept. I woke up a little before I received the phone call that surgery was successful. My mom brought me back to the hospital to meet Caleb when they wheeled him out of the operating room. We stayed at the hospital for two weeks in recovery. In some ways, having an emergency surgery AGAIN was difficult because we knew the pain that lie ahead of us. In other ways, it was much easier the second time around because we knew what to expect. There were a couple things that made the second recovery much easier on all of us that I would like to share for any other parent that is forced to experience this.

1) Prioritize Your Own Rest

When Caleb had surgery the first time, Brandon and I were so anxious to be there for him that we neglected our own care. We didn't want to leave his side. We were both there during the surgery. We were both there overnight on the little pull out hospital bed. We both got very tired very quickly. The second time around we knew that the best way to take care of Caleb was to take care of ourselves. I knew that Caleb didn't need me in the waiting room while he was in surgery so I used that time to nap. Brandon and I took turns staying in the hospital room with Caleb overnight the second time. One would stay and the other would go home and get a good night's sleep. This way Caleb constantly had a well rested parent to care for him. Our oldest son stayed with his grandparents while we focused on Caleb and ourselves. Sleeping in a hospital room with a sick infant is nearly impossible. Allow yourself to step away from the bedside long enough to rest. Recovery can take weeks and you will need your strength.


2) Recognize that Doctors Will Give You Optimistic Timelines

When a doctor gives you an estimated date to return home, think of it like a pregnancy due date. A due date is a reasonable guess, but there is a good chance that your baby will arrive past the due date. If the doctor says you might be going home in three days, please know that there is also a good chance that it will be six days. They want to keep your spirits high so they give you optimistic timelines. "We might be able to start solid food again tomorrow." "This tube might come out tomorrow." "He might be ready to wean off this medication tomorrow." Emphasize the might. It might happen tomorrow or it might take a couple more days. Don't get your hopes up too high. Be prepared to wait. It can feel like forever, but remember that you are in the best possible place you could be with a sick child. 


3) Consider Weaning

There was one major difference between Caleb's first surgery and his second surgery. He was breastfed at the time of his first surgery and weaned by the second surgery. After each surgery there was a period of time where he was not allowed to eat or breastfeed. Due to a complication, that period of time after his first surgery was about 10 days. The first couple of days were miserable for us all. Caleb expected me to breastfeed him and could not understand why I wouldn't. Sometimes he would get so upset about it that I had to leave the room and let Brandon care for him. It was also more difficult for me to rest when I had to worry about pumping. It was much easier for me to care for Caleb after his second surgery when he did not connect me to the dinner bell. Both of Caleb's surgeries were unexpected so I did not have time to prepare myself or Caleb, but if your baby's surgery is planned then consider how breastfeeding may effect your child's recovery. Of course, breastmilk is one of the most nutritious things you can feed your baby and may help their recovery. Talk to your doctor about how your child's operation may effect your feeding plans and decide on a plan that will work best for you. If the child undergoing the operation is older and you are breastfeeding a younger sibling, I suggest having the baby prepared to take a bottle so that you can leave her overnight with someone else while you rest and care for your sick child.

 (first post-op snack)

4) Look for Love instead of Answers

It's incredibly difficult to see your baby in pain. The first time Caleb had surgery I got caught up in the "Why's". "God, why did he have to go through that? Why didn't you just heal him? Why pain?" I wrestled with those question for a while and I finally came back around to the conclusion that God loves me incredibly and I must trust Him with childlike faith. My children don't always understand my reasoning, but they trust my love. When I let the surgeon wheel Caleb out of my arms and into the operating room, he didn't know why I let them wheel him away. He couldn't understand what was going on from his baby perspective. You can't talk intestines and stitches to a toddler. Likewise, I probably will never know in this life why Caleb had to suffer that pain. My perspective here is too limited to understand. Yet, I know God's love and I will have to trust in that. He has a reason and I don't have to understand it. While I didn't find answers, I found God's love all around us in the difficult time.

I saw God's love in the way we received exceptional care from an entire team of medical experts. It is a rare privilege to have access to that kind of medical care and I realize that without it I would be grieving a child today instead of celebrating.



I saw God's love in the way our family and friends rallied around us. Our family was there for us every step of the way. Our friends visited often to treat us with balloons, toys, Starbucks, and meals. We even had a complete stranger from our church bring us dinner one night. When Brandon and I started to come down with the flu in the recovery period, a friend stopped by--not once, but twice--to bring us her homemade flu remedy and pray over us. We were supported every step of the way.

I saw God's love in the sweet relief of laughter. Even in the hospital room there were pockets of laughter and joy--like the day Brandon sent out this update: "So for Caleb to get released from the hospital his intestines have to wake back up, meaning they must start performing all of their glorious functions. It's been taking a while so we've been asking everyone to pray. Well today Jessica called me from the hospital to tell me it's starting. I was excited and shared the news with my coworkers in the next room. I then experienced for the first time in my life the joy of a room full of people cheering because someone farted."

(first post-op smile)

I saw God's love in the cross. If everything else had failed us, the cross would be there. If family and friends weren't there, if the doctors hadn't been there, if the worst case scenario had happened, we had the cross to cling to and a resurrection to hope for. We were the lucky ones in that hospital. In just two weeks we left with a healthy baby. Not everyone with us that month went home with their child. When this life gives you a cross to carry, there is a resurrection and a reunion at the end of the road. 






Today we played and celebrated Caleb. We celebrated two years of being all better and said a prayer for those parents who are still waiting to celebrate all better with their child--in this life or the next. 










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