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The 3 Longest and Scariest Weeks of my Life

Now that a couple weeks have passed, things have calmed down and I was able to process those 3 weeks in hospitals — I feel ready to talk about the scariest, most tiresome and blurry 3 weeks of my life. 

I’ve been battling with doctors for answers on Rowens GI issues since he was born. Our entire life was dictated by his reflux/vomiting. Packing 20 bibs to go on a trip or 6 just for a few hour outing. I’ve had to buy extra pjs on vacation bc he threw up on 2 pairs in one night. I wore crappy clothes for months and didn’t bother getting ready because I’d always end up with spit up on me. It got to a point that a few months ago I stopped going places after 3 pm bc it seemed like he was getting fussier and worse at night. I started seeing friends less. I had to ask them to leave bc rowen was overstimulated and it triggered vomiting. I began getting depressed bc I felt so isolated. I still do. He was losing weight. I could tell he was in pain. The week of thx giving I noticed he was throwing up more. 6x in 1 hour. It calmed down a few days. Then one morning I found him choking in his crib with vomit everywhere. I took him to Hershey Med, they wouldn’t admit him for dehydration so we went home and told to drink pedialyte. He couldn’t even keep that down. We were home for two hours. He got fussy when his nana was holding him then started gagging/choking. All the sudden vomit came pouring out like dropping a pitcher of water on the floor. I’ve never seen it that bad. I called Hershey and demanded they admit us. Something was wrong. 

Over the next few days he got a lot of tests. 5 IV sticks. Blew an IV. A tube down his throat for 24 hours. It was awful. I’ve done really well keeping it together. I go into survival mode, become a robot and do what I need to do to make sure he’s taken care of. I spent the first few days in the hospital alone. I was so emotionally worn from seeing Rowen go through so much, reciting medical records to give doctors all the pieces and letting everyone know how he’s doing. For the first time since he was born, I cracked. I called my mom crying for help before the impedance probe was placed because I physically just couldn’t take seeing him in anymore discomfort. The nurses helped me and consoled rowen for a few minutes while I got myself together. That wasn’t the first time I went over the edge during all of this. 

We came home from Hershey after 4 days on a Friday night. The next morning I woke up to Rowen choking again. He was with his dad in the living room and I walked out To a puddle of vomit on the floor, he was struggling to breathe and he didn’t stop crying for 45 minutes. I made the choice to drive 2 hours to CHOP after consulting with drs. Little did I know we’d be there for 2 weeks and get a surgery. I kind of had a feeling but it all just happened so fast. 

Every morning I woke up waiting for doctors to do rounds. You walk out the door and 15 different doctors, residents, social workers etc are standing in the hallway to discuss the case. It’s intimidating.  I wrote a 4 page document on every drs visit, intervention, diet change, life style change, dates of significant events. I memorized it all so I could easily converse with doctors instead of stumbling over my notes. It’s information overload. It’s hoping for answers. Some days not getting any. It’s being told we’re going to repeat more tests. I learned how to silence the infusion machine until I could get a nurse in the room. I helped the nurses restrain Rowen and shove a tube down his throat to test the pressure in his esophagus. He wore boards Velcroed  around his arms so he couldn’t move them.  Socks on his hands so he wouldn’t pull. All while he was on sedation drugs, watching him go in/out not knowing what was happening. There’s a reason they say medical moms are like unofficial nurses. 

They came to the conclusion that Rowen has an artery suppressing his esophagus. So, the hospital stay we had in July related to all this was the reason he looked like he was having seizures when he swallowed food. Too big of pieces were getting stuck as he swallowed. He also has a longer than normal duodenum. This was contributing to the motility issues. His stomach only empties 50% at ninety minutes with liquids. After CHOP had all the pieces, we decided on Nissan surgery and a Gtube placement. The G tube would give direct access to small intestine for meds which would help them work to full capacity. The G tube also would help with feeding and hydration. Thank God Rowen went back to eating by mouth after surgery and all we’ve had to use it for is venting, meds and some extra fluids. I was terrified of the G tube at first and that it’d limit us just like the vomiting. Once I got comfortable with it I was so glad we had it. Since we got home Rowen has been a completely new baby. Or I should say the happy and chill baby he was before the vomiting came on full force. Our quality of life has drastically changed for the better. 

I’ve had my anxiety under control for a long time now. Since I started anti depressants a year ago it’s slowly disappeared. I still have anxiety but it’s over normal things now. Suddenly it snuck up on me. Day 3 in CHOP I finally had a few hours to process everything that just happened. It hit. Hard. I went into such a bad panic attack I was immobilized. Frozen on the hospital couch. Struggling to breathe. I managed to call my psychiatrist to ask for Lorazepam to help get me through the next week. I stopped taking lorazepam years ago because I was scared of becoming addicted due to family history. It had to be really bad for me to be that desperate for relief. By the end of the week I felt a little better, we were discharged for a few days and got to have some fun to get our mind off things.  The Christmas spirit was sucked right out of me and I was so sad we missed out on a Santa party with friends, Hershey park candy lane, all the Christmas things. It luckily was replaced with a visit to Christmas village and a trip to the movies. 

These pictures are from when Rowen woke up from surgery and the first few minutes we got to see him. I spent the whole time during surgery just sitting in the cafeteria with rowens dad staring. Biting my nails. Unable to move. Staring at my phone for text updates. Waking up was a really rough time for Rowen. Coming off the anesthesia he was unable to be consoled. Used all 3 doses of morphine. Any time you moved him he screamed in agony from the pain. I couldn’t even hold him without hurting him. So, I didn’t hold him for almost 24 hours bc I was scared I’d hurt him again. The only reason I was able to finish my school semester was because he was so drugged he just slept for two days. 

It’s traumatizing yet numbing watching your baby go through something like this. Numbing out is the only way to deal with it. Or you can’t be the advocate they need when your mind isn’t straight. It’s definitely taken a toll on my mental health but I’m surviving. I do it for him.  I’m grateful every day for the happy moments and those are what make distract me from the hard and the scary ones. We still don’t know how this trisomy affected Rowen‘s body anatomically.  It’s a day by day thing. I post a lot of positivity surrounding Rowen because that’s what I think my audience wants to see. If I portray all positive, it’ll blur the stigma that having a child with special needs is “difficult”. The truth is, having any children is difficult. Doesn’t matter if they’re typical or different. I just deal with different things than other parents. 

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