An Emotional Rollercoaster No Parent Should Ever Have to Ride On

by Katie Weed 2 years ago in parents

A tale of a single mom

Every parent has gone through the emotional rollercoaster that is called Pregnancy whether it be the mom or the dad. I mean, you've read all the books...twice, you've gone to every doctors appointment, you have the nursery all set up, names picked out, you're ready for the little one, right? What if I told you that some parents have to get on another emotional rollercoaster called the Neonatal Intensive Care Unit (NICU) before they can bring their baby home? The NICU is the place where babies who are born before 37 weeks live until they are strong enough to go home. Some parents are only on the NICU rollercoaster for a couple days, some a couple months, some others even for a year or longer.

But I'm not here to talk about other people's kids. I'm here to talk about my own. But before I can do that, I guess I should explain a little about myself. I am a 22-year-old girl who was engaged until about 7 months ago, and who's originally from Vermont, but because of financial issues me and my baby daddy (at that point he was my fiancé) had to drive 1,600 miles to Florida while I was 32 weeks pregnant with our first child, a baby boy. We moved to Florida because my baby daddy's parents invited us to live with them until we got on our feet. Little did we know that during the whole trip down, I was actually in labor. I didn't realize this because I was feeling it all in my back but I have a back injury already so I thought it was getting worse because my son was getting bigger. Unfortunately, not the case.

A few days after we arrived in Florida, I was taken to the hospital for dark colored urine. If you know anything about your pee, you know its suppose to be light yellow almost clear, if its dark in color that could mean blood in your urine (also that you're dehydrated). Possible blood in my urine and being 32 weeks pregnant? Yeah, not a good mix. I knew I wasn't dehydrated because I had been drinking water all day. So off to the hospital we went. When we arrived at the hospital, they checked to see how far open my cervix was (think of a cervix as a door from one room to another). I was 6 centimeters dilated which meant they would not be able to stop my contractions (sometimes they can give you a shot of some medication that will stop your contractions but if you are past 4 cm, the medication won't do anything).

My son was born at 32 weeks (2 months early), weighing 4 lbs. 5oz. He had such a hard time breathing on his own that I was not allowed to hold him when he was first born because they had to get him hooked up to an oxygen tank. For any of you who have been in the same room as a woman who just went through labor, you know they are a little out of it in general. I was no different. I stayed awake long enough to hear my little boy cry and see him get put in one of those incubators before I fell asleep.

Unlike those parents who get to bring their bundle of joy home after a couple of days, our little boy was in the NICU for 7 months. 7 months of the constant emotional ups and downs. Him being in the NICU itself was not what was causing the emotional ups and downs, it was what was happening while he was there.

When my son was 2 months old, he got sick with a cold. You're probably thinking "oh, its just a cold, no big deal, right?" Wrong. You see, when a baby at that age gets sick with anything, it's worse than if we got sick with the same thing, especially if they already have health problems. Because my son already had heart and lung problems from being born early, he had to be put on a breathing machine called a ventilator because he couldn't keep his airway open by himself. The ventilator had a tube that went all the way down his throat to his lungs.

When he was 4 months old he had to have surgery to put a "permanent" tube in his throat called a tracheostomy (because it sits in his trachea and its not actually permanent, it will eventually be able to come out). The trach gave his airway a little more support but he still needed the ventilator, but now it just connected to the trach so he didn't have to have a tube going all the way down his throat. At this point, he started acting like a "normal" 4 month old. Smiling, became more active, able to focus on things better, but he was not making any sounds though the doctors told us that that was normal. He also had another surgery done at the same time as the trach but this one they put a feeding tube in his stomach because he was not able to take anything by mouth.

It was heartbreaking, seeing him for the first time after his surgery with all these tubes and not being able to do anything to fix it. But I've learned since then that sometimes as parents, its better for us to let our kids experience things without freaking out every time they get hurt.

You're probably thinking that I became one of those super overprotective parents, but actually no, I didn't. I realized that although my son does have some medical issues, he's like any other "healthy" child and wants to be treated as such.

My son, Gideon, is almost 2 years old now. Over the past two years, my patience has been tried, my faith has been tested, and my heart has been broken into a million pieces only to be put back together again with one simple smile from a little boy who's favorite place is sitting on my lap.

When Gideon was 6 months old, we found out that he had a genetic disorder called Noonan Syndrome. Noonan Syndrome is a disorder that effects the heart mostly but can also effect his nerves and the way parts of his body are shaped (like his ear canals and how low they are set). When we found out that he had Noonan Syndrome, I fell into deep depression because I blamed myself, as if I could have known sooner. I had a hard time going to visit him in the NICU because every time I looked at my beautiful baby boy all I could do was cry and hate myself because I felt like I hadn't been as proactive as I felt I could have been. A few weeks after we received the news about his diagnosis, I came across a couple of Bible verses that I have kept in my heart as encouragement:

1. Jeramiah 29:11 "For I know the plans I have for you," says the Lord "plans to prosper and not to harm you. Plans to give you a hope and a future." 2. Psalms 139:14 "I will praise you because I am fearfully and wonderfully made."
Because of these verses, I realized there was a reason my son was born the way he was. That does not take away the importance of his situation or how beautiful he is in my eyes. In my eyes, he's perfect because he's mine.

After 7 long months in the NICU, we were finally able to bring him home. With that came home health nurses. It was a struggle to get nurses at first because there were not many nurses that felt comfortable taking care of a baby that was as complex on paper as Gideon is, but we now have 24/7 nursing to help with taking care of him. It's still tiring sometimes. He's very much a two-year-old and gets bored very easily so its hard to keep him entertained.

When he was first born, it was hard to think of him sitting up or walking or making noises or even being able to sit in an actual bathtub by himself but here we are almost 2 years later and he's sitting up by himself, he's making "baby noises" (as well as starting to make the " da-da" noise), and we are working with him on standing up so we can get him walking. Also, we have been able to give him baths in the regular bathtub. He still has the trach and ventilator and still getting fed formula by feeding tube BUT he's able to be off the vent for up to 8 hours every day and we are working on getting him used to texture of food in his hands so that we can get to the point where he can eat baby food by mouth pretty soon. The doctors are hoping Gideon will be able to be off the vent completely by next spring.

Our emotional rollercoaster is starting to slow down but I know it'll never stop completely as long as I am still alive.

The emotional rollercoaster myself, my son, my son's dad and grandparents have been on over the past 2 years is not something I'd wish on anyone, not even my worse enemy.

For those who know the struggle, kudos to you! Keep going, you are strong enough to live this life! Always remember that God has a plan, even if we can't see what it is and even people with disabilities are beautiful because they were created by the ultimate artist.

Read next: Understanding the Effects of Addiction on the Family
Katie Weed

Just a single mom who enjoys writing.

See all posts by Katie Weed