Unloading

Where to start? Well, first of all, we’re all just fine. Darwin is happy and healthy, Leah is happy and getting rounder by the day, and I’ve started my new job (!!!) and love it. But of course there are other things happening in our lives and in the lives of those we love as well. I’m in this place where my family that I love and lives all the way on the other side of the country is going through something that sits squarely on the hard/sad/frustrated/angry/overwhelmed side. I’ve been holding onto information about our sweet nephew for a while, trying to decide how to talk about it. It isn’t my story, but it’s affecting me deeply, so I’ve decided to toe the line between not sharing information that isn’t mine to share, and lightening this load by writing it down.

Our nephew is three months old. When we learned of his birth, and soon after that he was not well, I had crushing doubts that we would still have him with us at this point. His due date was two weeks ago. He’s eating, gaining weight, being cute. He has a big brother who adores him. Darwin loves to point out photos of baby “Pen-ley” on the photo app we have for them. He also had a brain bleed sometime in his first few days of life that resulted in several neurosurgeries, the latest of which was today. Everyone says the NICU is a roller coaster. He was days (hours?) from discharge when they discovered what would turn out to be the reality that his first surgery was not successful at relieving the fluid buildup in his brain. He showed no symptoms, and it was only an MRI at the point when they were ready to discharge him that brought the problem to light. My heart breaks for my brother and sister-in-law. They have been his parents and his advocates, while also loving and parenting their 3 year old, and working. If this had happened before I was a parent, I think my reaction would have been different. Now I think about it and just cry.

So there. That’s what I’ve been holding onto for the last three months. I’ve spoken about it with a few friends, but not at length. This doesn’t go into the details that should not be shared because, like I said, most of it isn’t my story to tell. For those of you reading…have you had a NICU baby? What was the most helpful/least helpful thing to hear/receive as you were taking care of your child? Please don’t share loss stories, I can’t handle that at this point, but I would love to hear your success stories for those with NICU graduates.

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20 thoughts on “Unloading

  1. Sending hugs and prayers for your family. My friend has a baby in nicu for 6 months now with a heart condition and downs syndrome. It is so draining for them and their 7yr old- and the cross country specialty hospital trips. They anticipate after a few more surgeries he’ll be stabilized enough to not be on such specialized care but there is no time line for it.

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    • Thank you. It’s really been in the last week that it’s blown up, finding out that the first surgery was not good and losing trust in the care he had received. Just got word that the x-rays after the surgery today looked good!

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  2. It is so hard to watch our families go through something so monumentally difficult and be so far away. I get it, and it sucks.

    I am so sorry about your nephew – I hope your family gets better news in the coming days and he can come home soon.

    Liked by 1 person

  3. Friend, the 6 weeks that Austin was in the NICU were some of the hardest, toughest, most emotionally draining days of my life. Some days were AMAZING, and some days, i spent most of the time crying. The only advice that I can offer is that, these NICU pediatrician/surgeons/nurses, they are AMAZING! They know your babies better than you do, becuase they are with them, scrutinizing them, caring for them 24hours a day. They know why they are crying, when they are hungry, and they cuddle them so, so good. Trust them. They have done this countless times. OUr little Austin had the most amazing nurses and doctors. These babies aren’t just numbers. They have names, and the doctors and nurse say them often. It’s difficult not being able to hold your baby, or to be there 24/7, or to nurse them, or know what is wrong the way you would with a baby that went home with you after a day or two. Tell them to have faith, to trust the doctors. Talk to them. Make them your best friends. One thing that our nurse told us is that Austin did so well because we loved on him so hard. We read to him in his isolette, we held his tiny little fingers, we sang to him, we brought him clothes with our smell on it. We acted as if the NICU was an extension of our home, and it showed. She said that helps so so much. That babies know. They know when they are so so loved. I’m sending so much love and patience and acceptance to you all. It’s not easy not knowing what happens next, but trust in the people caring for him at the hospital.

    Liked by 1 person

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