September was NICU Awareness month, and my way of raising awareness was to write from the heart on my Facebook page. Since we have many followers who aren’t on Facebook, I decided to post the content on this site as well. Some of the posts were tips and advice, some were just reminiscing, and some were just watching the memories that have no words. Enjoy!
“If I told you my story, you would hear Hope that wouldn’t let go.
And if I told you my story, you would hear Love that never gave up.
And if I told you my story, you would hear Life, but it wasn’t mine.”
–Big Daddy Weave
September 1, 2016: Day 1 of NICU Awareness Month
Though our NICU days are over, the people and the experiences of all 105 days had a profound impact on who we are today. So this month, I will share the blessings we watched unfold before us. Some of it will be new; some of it recounting images or stories you’ve heard; not all of it seeming like blessings in the moment. But each time we share, God uses His story in a different way, with a different person, and I believe with my whole heart that we are to share that.
My silence for the first two days is indicative of the first two days after Struthers’ birth. More often than not, parents of a preemie are in shock, not knowing how and whether and what to announce. While a birth is always a gift, it’s not always a celebratory situation. We were trying so hard to look on the bright side and lean on our faith, and it took all the energy we had just to do that. Not to mention I was still in Cardiac ICU myself. Updating others was both subjecting you to the unknowns and us to answering questions we could barely let ourselves think about. We know that we had armies of angels and prayer warriors, but we
needed that time to figure out what to say. After all, the photos we now find beautiful (like this one) were not what anyone would expect in a joyous baby announcement. So my awareness tip for the day: be patient with friends experiencing what is undoubtedly an experience they didn’t plan on, and allow them to process. They didn’t have the notification list ready and don’t have family photos to send. We didn’t even have a length measurement for over a week, and the weight (1lb 12oz) was downright terrifying! Honestly, it’s also hard to share what you haven’t held and don’t feel like you know. Just know that they will share with you when they’re ready, and That timing will be different for everyone.
No one really plans on having a premature baby. But some, like us, know it’s likely, and that’s who today’s insight is intended for. I remember looking through the list of classes offered at the local hospital (knowing I wouldn’t deliver there but still wanting to be educated) and not thinking many applied to me. Lamaze, childbirth, pre-registration and a hospital tour didn’t make much sense when I knew I’d be c-section in my cardiac specialist’s facility no later than 32 weeks. Then came week 25, when I was admitted and confined to the hospital 70 miles from home that I would deliver in. Confined but not on bed rest, and similar classes seemed somewhat appealing just to pass the time, though it was becoming apparent our situation would be far from ‘normal’ and such classes even more irrelevant. I casually mentioned wanting to do the tour to my favorite nurse one day, and she said, “Let me see what I can do.” I thought this an odd answer since I could pick up the phone and call and register for any tour that was just downstairs from my new home-away-from-home. Then she told me she had arranged for a tour of the NICU. And while this was the first time our situation really hit home, it was the VERY best thing that could have possibly happened. Our private NICU tour took place late one evening when the NICU charge nurse was available, and could have been more accurately described as NICU 101. We stood over a giraffe incubator while she taught us about everything from how our touch and voice would affect our preemie to kangaroo care, over stimulation, and the equipment that simulated a womb environment. So 2 days later, when physicians decided neither of us would survive if they didn’t get him out…well, let’s just say that NICU primer minimized the anxiety and fear, and helped us make sense of the unknown. So if you’re in the ‘lucky’ segment that knows a preemie is inevitable, or you’re on hospitalized bed rest, request this tour or a meeting with a neonatologist or NNP. It’s one of the best things you CAN do for your baby when it doesn’t feel like you can do much.
Day 5 (written by Eli Bremer):
Numb. That’s what you feel like… Just plain numb. Your child is not going to die… Or so you think. He also is months or years away from anything normal. There is now a routine to cares, rounds, pumps, and shift changes, and you simply hope for no bad news with each interaction. There will be no good news.
The anesthesia from the c-section has worn off, and the post-surgical realities are starting to set in. Family has gone home. Friends don’t know if it’s okay to contact you or what to say if they do contact you, so your phone isn’t ringing.
The sounds of the NICU start to become eerily normal as you realize that your trauma and life-changing experience was just another normal day at this abnormal location. Nurses and doctors come by and then go home and go on with their life. Their normal is a stark contrast to the life-altering experience you have just experienced.
New babies enter the NICU. Some have terrified parents, some have no parents. They are all treated professionally but also with an ease that makes you realize that this is normal for the strange world of the NICU.
In a state of hazy and sleep deprived existence, you realize that this will be your new normal until (or if) your child is released. You realize that counting days will be meaningless and all you can do is exist in the moment. The numbness is just a coping mechanism as you settle into a new normal. This will be your life for the indefinite future, and coping with the emotions is simply too much to take. So numbness takes over.
Yesterday’s post allowed you a glimpse into the extreme emotions of having a baby in the NICU. The devastation apparent in our words was probably hard for those of you who know our upbeat personalities to imagine from us. And our faith—where was it? It was there. It was carrying us–sometimes silently allowing the emotion to take its toll, sometimes boldly proclaiming itself through a visit, phone call, email, facebook message, CaringBridge post, a nurse, a new NICU parent relationship, or a new milestone. There were days when I could muster up the strength to truly cry out to God, sometimes in desperation and sometimes in joy; and days when I needed to rest on the people doing that for us. I had to come to the realization that those days, too, were God’s gift to me, and that it was OK to just be present and acknowledge that God never intended us to handle this alone. Through the ‘numbness’ we described yesterday, He was giving us rest in the midst of a battle, a time of letting us see and appreciate the work He was doing inside and out, and all the while nudging you all to be part of our story.
A year ago today, Struthers was baptized in the Methodist tradition by the South Georgia church that ‘trained up’ Cami, and a few weekends ago he was dedicated at our Colorado Springs church. When asked to choose a verse for him, we chose James 1:2-4:
“Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.”
In this life, we will always be lacking in something. His work is never mature and complete until He calls us home. In the meantime, He puts us all together and pieces together a beautiful tapestry that gives us glimpses of His perfection. So my greatest blessing from our NICU time and our continued prayer is that we know our place in someone else’s tapestry, as all of you did in ours. It may just be that God needs to give someone else rest in a battle–and there’s always one taking place in a NICU.
2 steps forward, 1 step back, 2 steps forward, 3 steps back. This is probably one of the first phrases NICU parents hear. At least the first part indicates a forward momentum. While the back steps are devastating, they are always better than nothing. NICU time moves on its own schedule, and that is simply preparing NICU parents for life post-NICU. The milestones you wait for–first smile, word, step–they don’t just happen at once. Instead they happen slowly in little forward and backward steps, and one day you realize it’s all happened. And while it’s all joyous and perhaps even more celebratory than ‘normal’ to reach these milestones, there is a twinge of grief and NICU reminder in each step,because the NICU parent is conditioned to expect the step backwards.
Day 8: On Day Of Life 8, as they call it, I got to hold my baby for the first time. There are still no words to describe the emotion, but the video does a pretty good job of capturing it. The thing to know about the NICU is this–it is full of new moms who had to wait for this sweet experience for one reason or another. None of us got to hold our little ones on our chest right after birth as we’d dreamed. But the NICU nurses and team know this, and they will go out of their way to provide you this experience as soon as your baby can handle it. It seemed like an eternity, and in many ways I feel like I’m still trying to make up for those 8 days. But I’m forever grateful for the miracle they placed in my arms. And in that moment, he wasn’t a preemie and I wasn’t sick. We were just mother and child experiencing each other’s embrace for the very first time.
Use technology to connect. These are the first views of my son andconversations with the neonatologists working hard to ensure I got to meet him in person once we were both stable. But while we were quick to use this in the first hours, I wasn’t so quick at turning to the numerous helpful forums and support groups I have found since. Find these groups and be encouraged by success stories, photos and tips. But use them only to the extent that you are gaining and learning from them at this point. When they start to drain you or discourage, or when posting updates is just too much to handle, keep in mind that YOU get to choose when to not participate. And others will understand. Technology is not everyone’s forum of choice. For us, it allowed a connection to family and friends across the country, and allowed some sense of normalcy.
Every single time this song comes on Struthers’ Pandora station, I’m jamming along until it gets to the part where the little boy repeats his parents. And I loose it. Such beautiful and hope-filled imagery in this one that it’s worth sharing.
God is good. All the time.
So much of the NICU experience is focused on Mom and baby, but don’t forget Dad! Dad is the one holding down the fort at home, ensuring Mom eats, washing breast pump parts, answering phone calls from loved ones who don’t know what to say or do, and sometimes having to carry on with work to provide for his new little family. But more importantly, Dad is also processing and grieving the loss of normalcy, and wondering whether the dreams he had for his children will ever be a reality. Dad is calculating risks and percentages while Mom can onlyfocus on certain scary words. Dad is driving back and forth from the hospital alone, finishing the nursery projects with no expectations of when it will be filled with his child, and all the while likely holding Mom together emotionally, reminding her that God is in control.
Day 14 (written by Eli Bremer) :
The N in NICU might as well stand for “numbers”. The NICU is full of them. From the ever-present monitors with ever-changing vitals to the rigidly-scheduled “cares” hour life will revolve around, everything in the NICU runs on numbers.
As a numbers person myself, you would think I would be comfortable around all these numbers. But numbers can get you in trouble as much as they can give you comfort.
In the hours after delivery, chaos ensued. Despite living for the two previous weeks in the hospital, the delivery was not planned or expected so soon. Therefore, there was no plan for post-delivery realities. Cami and Struthers were both in ICU’s but on different floors and in different parts of the hospital requiring a strange routing (it took my dad and I three to four round trips to find the most efficient route).
With close to 15 medical professionals surrounding Struthers during and after delivery, there really was not much opportunity to see the tiny sub-two pound human at the center of the fuss. And with Cami somewhat stabilized but not fully coherent in her ICU, I settled into a corner of Pod 9 in the NICU to wait for…anything.
Not wanting to bother the medical staff who were actively attempting to keep my son alive, I pulled out my iPhone and googled micro-premie survival and long-term success rates. That was a big mistake.
Putting in the correct variables, I learned that our one pound, twelve ounce baby had about a 25% chance of not surviving. He would have a 40-50% chance of a major medical or developmental problem. Nothing I was reading gave me any hope or confidence that we had anything but a major challenge ahead of us. And that’s assuming there was a “we” in the equation…
Prior to the delivery, doctors informed us that Cami would be at a 25% chance of a major medical event known as death. So drawing on my knowledge of statistics, I quickly did the math and realized that there was a 1/16 chance neither Struthers or Cami would survive the day. There was a 44% chance that one of the two would not make it. Sitting in the corner of Pod 9, I came to terms with the numbers that would rule the day. Because numbers don’t lie… Or do they?
A nurse saw my screen (and probably the expression on my face), and turned her full attention to me. She explained that numbers don’t tell the whole story. I was looking at aggregate numbers that did not take into account our unique situation. She told me that we were in an excellent hospital, had two healthy parents for our kid, had proper medical attention during pregnancy, and were not drug addicts. Looking at the numbers would only lead to anxiety, fear, and hopelessness, she explained.
I don’t know how much of what she said was true, but it didn’t really matter. I realized that the numbers could not tell our story, and that we would have to rely on our faith to show us our own way to success. For the rest of the stay in the NICU, I never again looked at statistical probabilities. Struthers would follow his own course, take his own time, and we just had to trust that everything would be okay.
real life, real emotion. A Normal Comparison – TinyBreaths
These women. These sisters, mom and a bestie. They all dropped everything to get to us as quickly as they could. They are all so very different but they all have the exact same look on their face. I didn’t know what to say or do, but they didn’t either. They were just there. And the further away we get from the blessed event, the more significant this becomes. The hours after a preemie birth are crazy for so many reasons. But don’t be afraid to reach out to those who know you best–the ones who can support you without your having to tell them anything. And accept their help. Believe me, they WANT to be able to do something. It’s too easy to tell yourself that no one understands. And that’s likely true, but those closest will understand YOU even if none of you can comprehend the current situation.
Day 19 (and the last 675+ days):
In the morning, when I rise, give me Jesus!
Day 20 (real time procedure day so that was all):
Thank you for your prayers this morning! We are All done and headed home! Good news: trachea and larynx look great. Not new news: asthma and Bronchopulmonary dysplasia are severe and obstructing lower airway significantly. But there’s nothing more to do other than add more steroids and wait…they sent lavage washings to pathology for lots of tests but they didn’t think he was aspirating or refluxing. Results from those in 2-3 days. We are with the oxygen for quite awhile…like years? Sigh. But still so very thankful for where we are.
Meet Paige. This lady right here manages to make signing a million forms at our frequent check-ins a delight. She greets Struthers with a wagon and calls us both by our names (not the names she sees on charts). If you have to go through this, it sure is a joy to have great people who love their jobs right there with you!
The journey of processing and dealing with prematurity never ends, but that’s honestly not too different than every other parent out there. Parenting is tough, and every kid and every family will have their own struggles. Some are more obvious than others but we must keep in mind that the difficulties are rarely unique to us alone. Lean on faith, family and friends and don’t forget to just enjoy the snuggles along the way.
These developmental assessments are an analogy in and of themselves, and so much can be learned about the journey through them. 1–Big Picture. I purposely gave you no detail of these assessments. I don’t really want to put too much emphasis on any one skill or obsess about what he should be doing that he isn’t. It’s important to keep in mind the big picture, take note and ask professionals about things you’re worried about, but also celebrate the steady progress. The NICU trains this into you, and it’s a good warm-up to the next few years! While we have so many things to worry about each day, it’s refreshing to take a quick birds eye view and realize that he is doing excellent in all but the 2 areas we knew were issues (eating and gross motor). 2–notice how short the range (white bars) is between 0 and 12 months. This right here demonstrates the whole concept of adjusted and actual age. One of the first things we were told was not to expect milestones at the timeframe you see on this chart, as growth happens so quickly in that early phase. And while we were told he would catch up by the time he was 2, it’s because the range for some of the skills he is just beginning vary so widely. (His adjusted age of 19 months and actual of 22 months is highlighted in pink in the middle of each page). 3–we used to talk about NICU and preemie experiences as a marathon. This looks to me like a crazy series of marathons and an oddly-familiar plan for an Olympic athlete 😉. The progress is apparent, but it has taken a monumental effort to nudge each and every skill forward. That effort will need to continue and double-down in some key areas, and we have the team surrounding us to help us get there! 4–God is great! All the time. And I can look at this chart that used to matter so much and know that even if we were stuck on the far left side still, God gave us an amazing little boy that I’m so proud of!
All things medical become part of the fun and the whole family just figures out how to integrate what has to be done into daily life. Among Struthers’ 20-30 word vocabulary are attempts at ‘stethoscope’ and ‘otoscope’. Sometimes our strange life has the sweetest little surprises!
I’m running a 5k at 0: (dark)30 tomorrow-the 3rd weekend in a row. It was supposed to be a half marathon (all on one day). Oh, boy, what an analogy for pregnancy and a premature delivery! We had expectations, but things changed and we had to accept what was best and would avoid harm. But when you embrace it all and realize that adjusting expectations is what you’ve been called to, the blessings are that much sweeter.
There are some days that feel so ‘normal’!!! They may be few and far between, and it kind of takes lots of planning to force the normalcy (calculate tanks needed, neb/vibration vest timing), but it’s so worth it! 22 months later and we’ve figured out how to work some fun adventures in. Today, it was a run for mommy, Sunday nap for all, bike ride for Daddy and Struthers, then fun at the farm for all! So grateful!
Day 30: NICU Awareness Day 2016:
I’ve spent the last month sharing pieces of our journey in hopes of helping others understand the emotions and logistics of this life-changing place known as the Neonatal Intensive Care Unit and Life after NICU. Today, I’ll end NICU Awareness month with a video I’ve never shared–one that shows the raw timidity, anxiety, and fear of the place we knew we were catapulting towards. But also apparent is the Hope and Excitement and a Peace that passes understanding in the midst of chaos. These are the 8 seconds before our life was forever changed by the people, machines, and experiences of the room on the other side of those walls. These are the 8 seconds before God revealed to us His work, not meant for our eyes to witness outside the womb, through the NICU. And they are the 8 seconds before we were Mom and Dad to one amazing little boy!