What it’s Like When Your Child is Sick …

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Today my son is 3 months old. I’ve been doing a lot of reflecting today. As most parents say, 3 months seems to have gone incredibly fast. But this time is also different. While, it has seemed fast, it also somehow feels like a lifetime ago when we were told our son needed life saving surgery.

I was pregnant in Japan where I got an ultrasound at every single appointment. This means I had an ultrasound at least every 4 weeks and after 28 weeks I had one every two. Not one of those ultrasounds raised eyebrows and my pregnancy was completely normal.

On February 16th, we welcomed our baby boy into the world. All seemed normal for the first several days, no issues. About 6 days after he was born we started being suspicious of his breathing but babies do weird breathing things so we let it slide. But the next day his lips started getting darker and his breathing seemed very labored. We were so blessed that my mom was there, who is a nurse, and told us we needed to go in. We went to the base clinic, and within 15 minutes they had us out the door to a Japanese hospital (there’s no American hospital on the base we were at). At this point we were still pretty calm and collected. We figured maybe he had pneumonia or swallowed fluid during the delivery and would need some antibiotics and we’d be on our way. But that’s definitely not what happened…

The Japanese hospital staffed quickly took him away from us for testing. They wouldn’t allow us to go with him and we had to sit in a hot, humid hallway waiting to hear something for the longest 30 minutes of our lives. The translator hadn’t yet arrived when a doctor comes out saying Cooper needed an operation. One of the most difficult parts of our experience was not speaking the same language. It wasn’t their fault, and not ours, but it was extremely frustrating.

Our baby boy was sedated, intubated, and sent to the ICU. The next morning he was transported by ambulance to Nagasaki Hospital, a little over an hour from where we lived, where he had surgery for a diaphragmatic hernia with sac. Essentially his diaphragm had not fully developed correctly. This hindered his breathing and had pushed several organs, including his heart into the wrong spots.

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I don’t think I’ll be able to properly describe the feeling of being told your newborn is sick. It feels like all the air has been sucked out of the room. It feels like you have a million questions but can barely open your mouth. It feels like you would sacrifice absolutely anything so that this tiny, innocent, perfect, baby wouldn’t have to endure any pain. It’s needing your husbands arms more than you ever had before. It’s the scariest moment of your life.

At just 8 days old he had his surgery. He spent 4 days in the ICU, and the next 3.5 weeks on a regular ward. You expect to be exhausted the first month of a newborns life, but this was exhaustion in a new form. It’s emotional exhaustion.

I would spend 2-3 days with our son while my husband stayed with our daughter. Every couple days we’d switch.I’d drive the hour home to spend 24 hours with her and then come back. I know an hour doesn’t sound long but it always dragged on. My heart hurt leaving which ever child I was leaving, yet I was anxious to get to the other one. My husband and I were ships passing in the night with a quick kiss and supportive hug. Again, my mom was a God send, changing her return flight twice to help fill in the spaces for those first weeks, especially while Coop was in the hospital.

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At one point, an x-ray showed his diaphragm had risen again meaning the surgery had been unsuccessful. Upon going forward with a CT scan they found that the diaphragm was fine and it was just a collapsed lung. JUST a collapsed lung. When in the world, would I have ever thought it was actually a positive thing my son had a collapsed lung? But that was actually a victory.

The whole experience was frustrating and exhausting. Some days you feel hopeful and completely fine. Then the smallest piece of unwelcome news unravels you fast. There’s guilt for not being with your other child more, missing your husband on a whole new level, and constant worrying all the time. There’s agony and longing for your family to just be whole and under the same roof. There were moments of numbness, and moments of non stop tears. I often wouldn’t answer the phone to family and friends checking in because talking was either too exhausting or I couldn’t even start without crying. On top of it all, was the confusion of a language barrier, and different customs (Japanese hospitals are ran very different then we do it in the U.S.).

That month was without a doubt the hardest of our lives. But along the way we had more blessings than we can count. You learn fast to allow people to help no matter how unnatural it feels for you. And we had lots of help. So much love and support from an amazing community of people. Although there was a language barrier, our son’s doctors and nurses were some of the most wonderful people we’ve ever met. I may not have always understood every word they were saying but I knew, without a doubt, my son was in good hands.

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The whole experience was also eye-opening and heart opening. While this was the scariest, most confusing, frustrating, and exhausting time of our lives, in the grand scheme Cooper’s condition wasn’t THAT big of a deal. He needed the surgery to save his life but he should go on to live a completely healthy one now. Not everyone is that fortunate. My heart breaks for families going on months or years in the hospital. The toll it takes is a big one. It has forever changed the way we will step up for families in need and the hospitals taking care of them. It changes the way you take things in. Every time he’s crying, or my oldest is whining, it’s easier to look past because the first thought I have in my mind is, “if they’re crying and whining it means they’re alive and here with me”.

That seemingly never ended month did in fact end. So fast yet a lifetime ago has never been more true. The first weeks of his life will forever be with us. Tonight, I will be praying for all the families and kids wondering how they’re going to make it through the next day. If you are the parent of a sick child, I know from experience, that there are really no good words to say. But I also know that you are a fighter. You are strong. Most of the time you may feel like all your energy is depleted and that you could crumble at any minute, but you have drive, determination, and a fierceness that most will never know.

I will never forget how fortunate we were, how far we’ve come in such a short time, and tomorrow morning I will be eternally grateful to wake up to a healthy, rather chubby, smiling little guy.

• K

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