Before I dive into this topic I feel something needs to be clarified. There’s this misconception in the special needs community that all of our stories need to filled with hope and joy and a light at the end of the tunnel. That everything we write about should be rays of sunshine. And oh yes we had a little struggle but look at how amazing everything is now and how much we have over come! I’m here to call bullshit. Not every story has a happy ending. And our stories certainly don’t just begin and end with one struggle we have overcome. There’s a lot more to the journey that is the life of a medically dependent or special needs child and it’s full of constant battles that never allow us to come up for air. And yes. Maybe we will have a happy ending and win the war. But that doesn’t mean I’m going to tell our story in a way that makes you feel all warm and fuzzy inside. So here it is. Here’s just a sliver of one of our current realities. Don’t get me wrong. I’m not saying there are no happy endings and that we aren’t filled with amazement and happiness for everything our son accomplishes and endures. We are beyond luckier than most families in our position and are often far better off with our incredible support network. What I am saying is just as anyone who has lived this life. Happy endings and fuzzy feelings are not a constant.
The idea that the NICU experience is a never ending rollercoaster was setting in for us. Never in our lives had we been so exhausted. We were complete zombies and to this day I have no idea how we were able to function during those first several weeks in the NICU. The best example I could compare this feeling to is in movies where a boxer has been beaten down so much, is barely standing and they are about to receive the final blow that will knock them to the ground. We barely came out on the other side of Beckham’s bowel surgery and hearing it was a localized perforation versus NEC was a definite win. This gave us a little boost, as we soaked in the mini victory, but the fight was not over.
The NICU is not exactly a place of rest and relaxation. As a parent of a NICU baby it can feel like you are constantly drowning in a sea of uncertainty, stress, sleep deprivation, medical terminology and emotional turmoil. All of this can pile on quickly, if not all at once, and it is important to take a step back whenever a small moment arises to care for yourself. These moments may be few, between all of the doctors, nurses, respiratory specialists, scans, and bloodwork rotations. Not to mention feeds, diaper changes and your child’s change in medical status, but every now and then the stars align and you will find yourself maybe 5 minutes or even 2 hours of actual time to yourself. How you choose to use this time could be key to surviving the roller coaster that is life in the NICU. Rather than diving into Google to research more about your child’s condition and statistics here are some helpful tips of self care for parents in the NICU.
After the dust had settled from the day of Beckham’s birth reality began to sit in. We started reading up vigorously about micro preemies, percentages, what to expect, other peoples stories and more. Regardless of the percentages as I read other moms stories of their micro preemies I began to feel a bit of relief and maybe even an ounce of hope. Stories of people that we knew flooded in. People that were preemies, or knew someone with a preemie that had survived and was doing fine. All of this time we didn’t know any of these stories about our friends or their friends and relatives and now we were learning so much about them. The hospital had a library where I found a few books on prematurity and what to expect as well as real stories from the NICU. As we read through these stories we found the majority of them the babies had 1 or 2 issues and then were fine. It was reassuring and I hoped this would be the case for us.
In the NICU there is no future, there is only present. It’s important for parents to adjust to this mindset of not being able to plan for their baby’s milestones or going home date because it will only lead to more and more disappointment. Easier said than done. As a project manager this was one of the toughest adjustments for me being in the NICU. I am a person that likes complete organization, to have things planned out and if anything changes all hell breaks loose. How can I not think about my baby’s future? Honestly, a tough adjustment mentally but emotionally it was easy. If I began to think about what the future held for my baby I would just start crying, so essentially it required me to create a mental block and focus on the now.
Staring down at a human, the size of a trinket statue you would see inside someones hutch, it’s hard to imagine it surviving. He had a full head of hair and was completely proportional. Many of the nurses commented on how good he looked as most babies at 24 weeks look like “alien babies”. He was very pink and his skin was so thin you could almost see through it. There was not an ounce of fat on him. Pure skin and bone. We could see his full rib cage and all. The doctor placed an ointment over the baby’s eyes and just as I was about to ask why he hadn’t opened his eyes yet the doctor read my mind and explained that since the baby is 24 weeks old his eye lids are still fused together and he cannot open his eyes for another week or so.
I have been debating in my head over and over how and where on earth to start with my blog again, especially with all that has happened over the past 6 months. Honestly, I still don’t even know. Everything was going well for us. We just had a nice birthday party for my husband over the weekend with friends and family. My health was about as good as it could get, careers for my husband and I were great (and still are), our daughter well… she’s always great, and our son was on track, looking healthy in the womb. Our surrogate was doing everything right. Eating healthy, moderate excersize, vitamins etc. She was sending us weekly photos of her belly growth so we could save them and see him grow. We recorded all of our voices reading books to him so she could put headphones over her belly and play them for him as he was around the phase where he could hear. A countdown to baby chalk block was centered on our kitchen table as we all took turns changing the number of days each day. We had yet to feel him moving in her belly but she said he was a big kicker. Kicked her 24/7. Everything was perfect. We were set for a follow up appointment January 19 at 8 AM with ultrasound to check on how our little man was developing.
January 19 he would be 24 weeks 5 days. Just over the half way point.