Having a baby is no walk in the park. Not for anyone.

My experience with my first child, Riley, was a tough one. I was young and about to embark on a journey that I could never have prepared for. It was hard and it was scary, but I think it sheds some light on some of the unspoken parts of pregnancy – what happens when it’s not normal?

I was nineteen years old when Matt and I found out we were expecting. We had literally just moved into our first apartment together and here we were about to be parents. It would be my first child, his second (he had a three-year-old son from a previous relationship).  I remember being scared to tell my parents, but I did, and they reacted how I should have expected – disappointed that it was happening so soon, but grateful for a baby nonetheless.

It was at our gender ultrasound that we found out my pregnancy was not normal. I didn’t realize it at first. I was a young, eighteen-year-old, soon-to-be-mom just waiting to hear whether it was a boy or girl. And being so naïve, I didn’t think anything of it when the ultrasound technician left the room to get a second technician to confirm we were having a boy. I still didn’t think anything of it when they grabbed a third tech to look at the screen. How hard is it to find a stick-like object poking out of a big blob??

It wasn’t until my follow-up appointment with my doctor that I found out Riley’s body was not forming the way it should have been. I sat there, listened, nodded my head while my doctor apologized, told me I would be going to a specialist, and sent me on my way. It still hadn’t hit me when I drove back from the doctor. I still didn’t get it. It wasn’t until I googled the term he had given me, gastroschisis, that I realized what exactly was going on. What does that mean? It means that the baby’s stomach hasn’t closed completely when forming, and the intestines were developing outside of the body.

I got home, made some calls to share the unfortunate news and scheduled an appointment with the new doctor later that week. The next few months became a big blur, honestly, I remember little, to be honest. I know we toured the hospital we would be delivering at. I know I had bi-weekly ultrasounds to check on the intestines and see how much, if at all, they were swelling – which would indicate when I would deliver. I remember meeting with a pediatric surgeon who explained what we would be experiencing after delivery – I would have a c-section – not required but given that I broke my pelvis a few years earlier I chose not to risk breaking it again due to the impact of vaginal delivery. Riley would be in the hospital maybe four weeks. They would wrap his intestines in a silo (using gauze or a gauze-like material) and slowly place them back in. Not too bad, right?

I am someone that likes to ponder situations before fulling dealing with the emotions that go along with it. I take things in slowly, so I never had any big meltdowns over the process initially, not during the pregnancy stage at least. Since I can remember, I have always been someone who has to find solutions right away. If I have a problem I literally feel sick until I get a solution. I don’t have to have the problem solved necessarily, but I need to at least have a plan to solve it. That’s how this whole situation with Riley was. I didn’t like what we were dealing with. It was scary, but I felt comfort in the plan I was being given by doctors. And I had a great support system between my family, friends and co-workers. I was told what to expect and so that’s what I expected. Why dwell on it right? Let’s just get through this.

Unfortunately, what we were told to expect didn’t happen. Not at all.

 

In October, two months before my due date, we found out it was time to deliver Riley. During one of my bi-weekly ultrasounds we saw that his intestines were starting to swell which meant he needed to be delivered. I received a call that afternoon with details on my scheduled deliver and that was that. It was time.

The night before delivering Riley I remember being more scared than I had ever been in my life. Matt and I went and stayed the night with my mom. We got up early the morning of delivery (after a night of zero sleep) and made the drive to the hospital. When I arrived, I realized that my doctor whom I had been seeing since we found out my pregnancy was considered high-risk was not going to be present. She was not working that day so I had another doctor in her place. Unfortunately, he wasn’t made aware that I was having a caesarean. He actually tried to convince me to have a vaginal birth, even after I explained that I wasn’t comfortable given Riley’s condition and my own pelvic history.

After a lot of back and forth the doctor finally accepted that I was going to have a c-section and left to prep the room. Confrontation isn’t an area I am strong in. I find that I stick up for others much better than I do sticking up for myself, so having to put my foot down in this situation was pretty tough, but I’m extremely happy I did. I found out years later during my second pregnancy why opting for a vaginal delivery was a TERRIBLE idea for him to have at all so it definitely worked out for the better.

Going through the c-section was a new experience – one Matt made certain to get photos of. Don’t worry, I won’t share those! The hospital I was out is one that med students train at regularly, so there were many people present during my surgery and lots of conversations explaining what was going on. At one point, I kid you not, my doctor said the words “Oh, shoot!” I remember immediately looking at Matt and thankfully he was able to remain calm and keep a straight face. Had he not I probably would have started freaking out. I never found out what that remark was about.

Within an hour Riley was born. Being only four and a half pounds it was pretty easy to get him out. I knew that I wouldn’t be able to get much time with him before they would have to take him away to get his intestines wrapped and secured, so I wasn’t surprised for him to be taken from the room quickly, but as I was in the recovery room I was given a phone by one of the nurses. Apparently, the doctor needed my approval for surgery. Huh?? What surgery? Apparently, there was some sort of complication and Riley needed to go back to surgery asap. I approved the surgery, he was rolled into my recovery room and I was allowed to touch his hand for a brief moment before he was carted off to surgery. I was numb. Both physically (from the surgery) and emotionally. I couldn’t speak. I couldn’t tell anyone what was wrong. I was taken back to my room and had family all around me wanting to know where Riley was. And I didn’t know what to say. I could not wrap my head around the situation. I ended up getting on the phone with the doctor about 20 minutes later because I needed answers. I needed clarification.

I ended up finding out that Riley’s intestines had somehow gotten twisted. How or when I don’t know. But it caused every plan we had made go completely out the window. Our stay in the hospital was no longer four weeks. When Riley’s intestines became twisted a portion of them stopped working completely had to be removed. I don’t remember how much exactly, but a good portion was cut off. Riley was no longer a baby born with gastroschisis. He was a baby with short bowel syndrome.

Our very first nurse told us he would never eat normal or lead a normal life. This was crushing to us. I understand being honest about the outcome of certain situations, but this just felt harsh, unnecessary, and quite honestly inaccurate.

I don’t write this to scare people. I don’t write this to worry you about pregnancy. My pregnancy with Riley was extremely rare, like many high-risk pregnancies are. But I realized by having a baby who was hospitalized several times how hard it must be for those families who deal with it much longer than I had to. I had never thought about the families who have children with serious diseases or life threatening illnesses that cause them to live in hospitals a large part of the year. I never thought about women who think they are having a normal pregnancy, but then find out that it’s now a risk to even give birth.

Having a child who is hospitalized brought to light so many areas of parenting that I never spent much time thinking about. Those families have such strength and resolve.

It took Riley almost two months before he was able to come home for the first time, but it wasn’t permanent. He was admitted back to the hospital at least three times over the next year for various illnesses attributed to a weak immune system and the ability to dehydrate very easily. He had two major surgeries (one being to connect his intestines at around 7 months old) and at least three outpatient surgeries. In total, Riley probably took a bottle for all of two months. The rest of his first year and a half was on a feeding tube and with a central line in his chest. He had to taught to eat food. But even with all of that, I am still so lucky. Riley is eight years old now. He plays baseball and basketball. He loves math and reading. He has an incredible sense of humor. The nurse who told us that he would never lead a normal life was so incredibly wrong.

If you take anything away from this article I hope that it’s the fact that we all have struggles. You are not alone. We all go through obstacles that at times feel impossible to overcome. Rely on your friends. Rely on your family. Cry if you need to. Really, you are not alone. There is a light. I now have a happy, healthy eight-year-old who has taught me that strength comes in all sizes. He has been through more than most people will have to deal with in their who lives. Just remember to take a moment to think before you judge. We are all in this thing called life together. 

 

Please check out more stories from this amazing mom on her blog! You can check it out here!

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