I began this site (originally through Caring Bridge) as a way to update our family, friends and prayer warriors from around the world who couldn’t see and meet our little miracle for the months we were in the hospital. But I have kept it in the deep desire to provide insight, hope, encouragement, understanding and reality to those who might come across our story. So…the story continues with a few reflections that have been on my heart in these past few months without blogging.
My athlete husband Eli pointed out very early that this was going to be a marathon, not a sprint, and at the time we thought we were referring to our time in the NICU. But indeed, our marathon continues 3 years later. Our life does look slightly different from others, but much like the bodies of ultra-distance runners adapt and running becomes a beloved part of life, we have adapted and we strive to just enjoy the run.
There is a lot of processing that continues when I’m reminded of where we were “On this Day” three
years ago, and especially this time of year it may seem to some like we are dwelling on the past. But for us, the reflection and the memories are about appreciating how far God has brought us, the experiences and opportunities He provided, and the people He ensured surrounded us. It’s about reminiscing on a time that, though crazy and abnormal and traumatic, was actually one of great peace throughout turmoil. When there is nothing you can do for your child, your husband, or yourself but pray (or when it’s so bad you can’t and you let others’ prayers sustain you), well…it’s a surprisingly beautiful place to be and you can only appreciate it after the fact. So thank you for bearing with the memories, especially from October-March!
That being said, we are also soaking in the moments we seriously didn’t think we’d see. Struthers LOVES riding his bike, going on walks, kicking and throwing balls in the yard, playing with trains and trucks and anything wheeled…all the while talking in coherent thoughts NON-STOP!
The NICU experience teaches you to focus on certain milestones that pave the way for taking your baby home. Off the vent, off TPN, central line out, IV out, off CPAP, off high-flow, feeding tube out, eating, growing, moving, awareness, room-air challenge… That is a healthy way of focusing on the future while in the NICU, but I wasn’t prepared for the fact that it’s part of our marathon that didn’t stop, and letting that mentality define parenthood is NOT healthy. The milestone-checking continues with every doctor’s visit, therapy, and weight check. But at a certain point, NICU parents have to make the same jump every parent does and trust themselves and their instincts about how their child is doing (the best NICU teams teach you this too). And you can only know that if you get out of that ingrained NICU mentality, stop focusing on the ‘shoulds’ or attaining the next benchmark and get to really know your child in a way that the heart monitor, oximeter, growth charts and developmental assessments will never reveal. The intimate knowledge of the child God gave YOU should guide the decisions you will make on their behalf for the next few years they are in your care. An excellent care team knows that and will come alongside you, helping you discern what not to worry about, the healthy benchmarks to strive for, and what milestones are actually important when. Trust God, trust the instincts and judgement He gave you, surround yourself with a team, and try to place that best-intentioned focus on the one thing only you can provide to your child.
All of that to set the stage for our most frequently asked question: ”Wow! He looks great–why is Struthers still on oxygen?” I could focus the answer on the medical mechanics, but what I want to say on the heels of the previous reflection, is that once I stopped focusing about whether we would pass the next room air challenge or how quickly we could wean down, and instead recognized all the things the oxygen DID allow, there was more freedom in that than I could have ever guessed. Even with the oxygen, Struthers’ respiratory limitations are becoming more apparent as he gets older, bigger and more active. But the tube and oxygen that accompany that sweet little cannula-tan-lined face everywhere are suddenly not just a hassle to plan for and transport. They are the tools by which he CAN run around and kick a soccer ball, ride his bike, pull the wagon, and even laugh or talk extensively without turning colors and losing breath. They are the very reason he has been able to catchup in his growth, and I’m fairly convinced they have something to do with cognition and language development being on track. We have lots of unanswered questions about why Struthers works so hard to breathe and requires the extra support, but what we are certain of is that it’s a relatively simple way to take some stress off his body, and by keeping him on we have perhaps allowed for other areas of development to stay on track. And this Mama’s ok with just knowing it’s what he needs now, and I will no longer worry about how long that may be the case. I’m thankful we are able to provide what he needs to keep shining his Light to all who meet him—and reminding us of our blessings every single day!
THANK YOU for reading and joining us on this adventure. Just as our journey through extreme prematurity has ebbed and flowed and changed, so have our communication methods. And for those of you who follow this site, please accept my apologies. Many of our TinyBreaths facebook followers have the advantage of seeing the moments that make up our days, weeks and now years with our miracle, and I’ll try to figure out how to integrate that here for our non-facebooking followers. But I will also make a diligent attempt to ensure this site still is a source of hope, inspiration and confirmation for other families, and there is a ton more on my heart that will spill onto these pages in the future.
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.
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!
Every mom does it. We want to know how our child compares to others, to ‘normal’. But it’s also one of the first things your NICU team will warn you against. So I’ve conditioned myself to not do this; to not compare my child, our birth experience, our number of days in the NICU, gestational age, developmental milestones, and the list goes on. I just want to be grateful for and accept where we are and appreciate and celebrate each milestone. Struthers has shown us time and time again that he and God are in lockstep on their own little timeline, and that has its own special joys.
However, there is a time that comparison can help clarify the severity of what we’ve come to accept as normal, and help MamaBear know when to trust her gut and push a little harder. Our NICU course, though inherently abnormal, was relatively smooth. Nothing abnormal for the NICU happened during our 4 month stay. Things that looked abnormal–bili-shades, central lines, ventilator, cpap, oxygen, monitor leads—were all completely normal in that environment, and to us as first-time parents. We fully recognized that we escaped other ‘normal’ NICU occurrences associated with a lifetime of abnormality. We watched families lose their precious children, receive life-altering diagnoses, go home with ventilators and tubes, and experience multiple surgeries. But fast forward 22 months: the child who went home on a ventilator is now tube-free and running around, as is the one born with a heart defect requiring multiple surgeries. We came home on 1/16th LPM of oxygen and no other monitors or tubes. And now oxygen concentrators, suction machines, pulse oximeters, nebulizers, inhalers, vibration vests, feeding pumps, IV poles and nurses in our home all day are our norm. So I can’t help but compare.
A medical professional clarified this for me this week. He pointed out that while our NICU journey was relatively ‘normal’, our course since has been anything but, and that I needed to know that this isn’t an expected outcome. No one expected us to still be on oxygen, much less increasing needs to 1.5 liters-per-minute. No one expected us to be relying on tube feeds that now account for 90% of his daily intake some days. No one expected that Struthers would have the muscle strength to stand and walk and the most incredible belly laugh, but not be able to support the activity through his breathing. No one expected that we could keep giving a regiment of up to 5 steroids and bronchodilators during the day and he would still be audibly wheezing by the time I walk in from work each day. And more significantly to the medical professionals, no one expected that even at 22 pounds (YAY!!!), bounding up his growth chart and quite frankly looking GREAT, breathing would not be improving—and in some ways declining. None of this is normal.
So on Tuesday, Struthers will undergo a slightly abnormal joint diagnostic/exploratory procedure under full anesthesia. His Pediatric ENT and Pediatric Pulmonologist will take some time to look via bronchoscopy at any potential causes for the extreme airway obstructions and reactivity we see clinically. Having both there is key—the pulmonologist will extend the scope into the bronchioles to assess development/maturity and alveolar expansion, as well as do a full lavage and examine washings under a microscope to rule out aspiration. The ENT will explore whether there is soft tissue in the larynx and trachea that collapses with increased work of breathing or any other anomalies that would produce the alarming whistles and wheezes and decreased oxygen saturations we see on a daily basis. And maybe, we will find something we can fix that will put us back on a ‘normal’ track that even has a comparison point. As always, your prayers are appreciated.
My favorite part of ‘blogging’ is providing you with insight into our lives, sharing our moments of joy and disappointment alike and going beyond the explanations in revealing our hearts, attitudes and emotions of the journey. I don’t really enjoy the rudimentary updates (especially when I’m so far behind), but there’s so much to update you on and I have no emotional energy left for revealing my heart at the moment. If I learned anything during our time in the NICU (nearly 2 years ago!), it’s that our loving prayer warriors deserve even the most basic of updates, so here it is, sans color commentary.
Fun stuff first, with lots of videos in the links:
Struthers is STANDING! He’s quite unsure about walking but has taken just a couple timid steps. That perfectionist personality still shows in that I’m quite sure he will just wait until he can do it perfectly and practically run before he reveals to us that he can walk.
Lots of words and even phrases have made it into Struthers’ vocabulary, but his favorite is still one of his firsts–Quack! This video of going to the ‘duck park’ is adorable, and I’ll let you bask in that a few moments before I point out to you what that video makes painfully obvious to me.
Struthers still ADORES and responds so well to music! This video shows him “Row, Row, Rowing” (ie-home PT for hip flexors). Be sure to watch to the end and catch his “Merrily, Merrily, Merrily” attempt!
Struthers had his first real haircut last week! Those beautiful golden curls are gone, hopefully to return, but it was time after repeatedly being mistaken for a girl.
Medical Updates: It’s all About the Lungs, About the Lungs, About the Lungs…
Recap of Zebra Hunt Part 1: Chest CT in May indicated that the damage to Struthers’ lungs is extensive. Multiple areas of collapse, fibrosis, and diffuse scarring, meaning the lungs are scarred to the point of being inelastic with little-to-no gas exchange in areas. Cystic Fibrosis and Interstitial Lung Disease eliminated as culprits, so it is ‘just’ severe and long-term case of Bronchopulmonary Dysplasia (BPD).
Recap of Zebra Hunt Part 2: The Pulmonary Function Test concluded that Struthers has moderate-severe asthma in addition to the BPD. This is no surprise at all, it just tended to verify the cyclical, reactive symptoms we see when Struthers isn’t getting enough oxygen. And confirmed that we are doing the right thing in continuing to support with a high level of oxygen therapy. We cannot possibly expect new lung tissue to grow if the ‘live’ tissue that’s there is working so hard to keep up.
We are still at 21 pounds (8 oz today), and we’ve been there for about 2 months. About 4 weeks ago, we received a feeding pump and direction to try targeting 40 ounces (of 30 kcal formula) or 1200 cal/day. Do you know how hard that is to reach even with a pump?!? In the 6 weeks since that directive, we have only reached that goal 2 times. And while Struthers looks great and has gained a few ounces from the increased effort, he is nowhere near being able to take in what he needs to grow and develop new lung tissue that will be necessary to compensate for the areas of his lungs that are permanently damaged and won’t recover. AND in addition to needing the extra calories to develop that tissue, extra calories are needed to support his current work of breathing. So just today, we were given orders to begin overnight continuous feeds. I’m not really sure how we will handle that at this point, but I will update as we figure out this new part of our regiment.
I’ve used the term ‘work of breathing’ in this post several times. This is evaluated in several ways on a minute-by-minute basis in our house. Just watch the Duck video above… We watch for his chest pulling in, shoulders heaving, couching/gasping and ‘reaching’ with his head up, raspy/noisy upper airway, and wheezing. And every single day, even at 1 lpm of oxygen and 4 different inhaled steroids, we hear or see these symptoms that indicate support is needed. Often, we see these symptoms when he’s busy playing and being a normal toddler (or laughing adorably at ducks), so it’s the hardest thing in the world to figure out how to intervene (mom’s mind–prevent further damage much less encourage tissue growth) without interfering with equally important cognitive and motor development. It just breaks your heart when he CAN play that you have to interrupt it and make him sit still for a nebulizer full of steroids or you’re cranking that o2 dial up one more click. But at the end of the day, breathing is kind of essential and everything else falls behind it.
Those were the exact words of the newest specialist (an endocrinologist) we saw this week. Steroids are bad, but not breathing is worse. If they’re necessary, we are grateful for them. But Goodness, this boy takes his fair share. Daily. The side effects and the risks of long-term, chronic steroid use are well-known and we already see quite a few of them. So we will minimize where we can, utilize loading doses for stressful events (procedures, surgeries, illness), continue proper weans of oral steroids, and go ahead and add that specialist to our list of ‘primary’ providers we see frequently.
As expected, just this recap and explanation of where we are (though even here there are holes–like eating–that I will just cover later) has exhausted me emotionally. So I do promise to do a better job of filling you in more frequently, allowing the emotion and processing to take place through this forum. For now, please know that your continued prayers are appreciated and that we are extremely grateful for where we are, giving all that Glory to our Creator and Savior, and living each day to its fullest.
Who would have thought Freedom had anything to do with Guilt? Any mother, daughter or wife of a soldier killed defending our country could probably answer that. And while I will never compare the struggles our family faces to those families who have lost their loved ones (and we know a few personally), I have discovered that perhaps all of Motherhood is about guilt and second-guessing, and ultimately protecting the life you’ve been charged with raising and then letting go. And that, we just may have in common.
We haven’t so much as taken Struthers in a grocery store yet. And it’s not about being a germa-phobe or overprotective first-time mom. It’s because EVERY time we have taken him to a public place, even with proper precautions, he gets sick. And we’re not talking a little cold sick. The clinginess is first–he won’t let me take a step in the direction of another room. Then the sleep–12-14 hours at night, then another 4+ during the day, but none of it is restful. Then the congestion–out comes his (ok, our) least favorite thing in the world, the suction. Then we hear the wheeze and watch his o2 saturations drop, his shoulders heave and his chest pull in–out come the Ipatroprium Bromide, Budesonide and Albuterol nebulizers around the clock. Then the prednisone loading dose on top of the 3 other maintenance steroids and the subsequent ‘roid rage. Inevitably, he doesn’t eat well either, so high-calorie formula and fluids through the G-tube we didn’t think we needed. This is at least a once-a-month occurance, even considering we don’t take him anywhere and are pretty much hermits. No freedom, and yet we have so much!
But at a certain point, you just need that freedom to go where you want when you want. And you so desperately NEED to take your child with you and learn how to cart them in and out of places and take adventures somewhere other than the Dr’s office. I need it and he needs it, right? Besides, if he gets sick, it’s much more likely to have come from the hospital last week, right? So went my logic as I woke up on a beautiful Saturday morning last week with a good dose of cabin fever. So we played outside all morning while I took assessment of what plants I wanted for pots on the porch. And we went…we went to Home Depot, and I even let Struthers drive the ‘cart’ (after it was fully sanitized of course). We went to Focus on the Family for me to grab a book I’ve wanted forever…and it was Family Day, complete with a 4H petting zoo I couldn’t shuttle him past without stopping to pet the goat who looked just like his Little People one! So we embraced the fun and normalcy of it all, and I was thankful the other vendors and booths at Family Day were closed and few people were left when we arrived @3. Until Monday.
Monday brought the clingy-fussy’s and slight congestion. Guilt pang because I knew what was coming. Then Tuesday brought the sleeping extremely late and the fever. Wait, fever? Over 3 days, our sweet boy’s temperature reached 104. And it was alleviated by Tylenol, but only until about an hour before the next dose was due. Now, while Struthers’ situation is a bit different and we must be cautious, I’m constantly wary of the fact that I am a new first-time mom and I have to keep in mind that every new mom goes through such questions when their kid is sick. I also know how harmful running to the doctor’s office can be–he doesn’t need to be fighting 2 bugs, viruses or colds. So our pediatrician and pulmonologist are on speed-dial, and they are so responsive and pro-active with Struthers because they’ve seen him take turns for the worse way too quickly. Given that we had the crazy idea to ring in the summer with a week away in Mexico coming up (per the aforementioned one planned trip we decided not to cancel after the pulmonologist suggested minimizing), they needed to assess what was going on. So twice this week, we found ourselves in the pediatrician’s office, each time shuttled back to a room without waiting in the namesake room. After blood cultures and 2-full workups (again, guilt for the pokes), we were encouraged to keep our travel plans, which had its own accompanying guilt and second-guessing. Were we putting our needs to get away above our son’s needs? But we left the pediatrician’s office with knowledge that this appeared to be yet another virus, not yet pneumonia and not bacterial. And Goodness knows we know what we have to do to ride out viruses, and we have all the tools to manage keeping it out of his lungs. Just add to the packing list an antibiotic in case, enough prednisone to initiate another round (even though we aren’t yet done weaning from the previous round), and the handful of pediatric masks from the pediatrician for the airport/plane ride. And the realization that a) sea level will be good for him IF b)we can prevent him from getting sicker, and c) we could either be providing this round-the-clock care we are fully prepared and capable of at home, or we could do it at the beach. But all of it that too-familiar guilt and questioning whether this was the right call.
So this Memorial Day, we are writing you from a beach in Mexico. And I have to say, it is a great change of pace. We have only made it down to the pool twice (for a total of an hour) in the 2 full days we’ve been here, but it’s still been a much needed vacation thus far. And Struthers seems to be better (he was by Friday, or I’m sure we wouldn’t have left).
However, it seems that even at sea level, he is in need of his oxygen badly. This was apparent twice–once when we didn’t realize he was ‘unplugged’ but we noted how tired and sleepy he got so very quickly as we were getting ready to go down to the beach. Then we realized he was unplugged (10 minutes at most), plugged him back in, and he perked up within minutes. Talk about GUILT! The second time was today, when he was doing so well, saturation at 100% and freshly napped. So I decided to see what he would do off the oxygen for a bit. Note that this is something our pulmonologist even encouraged, and I wouldn’t do it if I thought it was a threat at all. Let’s just say that I no longer have to wonder if he would be off oxygen by now if we lived at sea level. The answer is a resounding and undoubted no, with the first 17 minutes above 90% but steadily dropping to 79% (!) by 21 minutes. Enter guilt again, but not totally surprising. I’ve always said the boy knows what he has to do and holds his own for a long time…until he can’t anymore. So I will not be trying him short periods off O2 even at sea level.
We will post photos from the week to the Photo Album page, and try to caption them, but I don’t plan to be on the computer much this week 🙂 Instead, I’d like to just embrace trying to keep something normal about a family vacation, and celebrate the freedoms we do have with our son, even if we are tethered by oxygen and medical equipment.
Today, especially, as we tangled ourselves in oxygen tubing in the pool and nearly removed a g-tube, the focus is on the freedoms. I can only hope to have the courage of so many other moms who have sent forth their sons to defend the very freedoms I take for granted. I want Struthers’ Dad, uncles, great-uncle, cousins and great-grandfather to teach him the true costs of freedom. God bless the USA, its soldiers past and present, and the families who support them as they defend our Freedoms.
Thank you all for your sweet words of support and encouragement for yesterday’s testing (Part 1 of 2). As crazy as this seems, Struthers and I experience the most powerful bonding moments in the hospital. And I guess that’s appropriate and altogether NORMAL. Perhaps it’s because when we are there, there is nothing else. Just us, our little family. No housework, no bottles, no feeds, no meds ( that I have to administer), no nebulizer, no bills or mail pile, no work emails or calls because it’s the one time I’ve carved out in advance to just hang out with him. Nevermind it’s in a hospital room, waiting room, exam room or pre-op area. THAT’s our time. And I need to make more of it outside of those familiar locations. THIS is a normal-mom struggle, and I’m so grateful for it! I’m grateful for being able to laugh at the fact that Struthers thinks stickers the nurse gave him are supposed to go on his face to hold his oxygen. I’m grateful that he can entertain himself for an hour putting his spacer and inhaler together correctly (see the new YouTube video on the page). I’m grateful that he looks forward to the wagon rides and that everyone plays along, from the valet who fetches it when he yells “gagon” as he sees one, to the radiologist who let him stay in it instead of the bed rolling alongside us to the procedure room, to the anesthesiologist, who practically had him asleep before removing him from his beloved mode of transportation (or BlueBunny).
The CT went very well, and they were actually able to get some really good images with less exposure time than they were expecting. Our anesthesiologist was AMAZING, and he wanted me to help hold Struthers while they gave him the anesthetic through the mask. We’ve known from Day 1 that this kid was a fighter, and I’ve known how much he fights coming out of anesthesia. But none of that prepared me for how much he fights going under the anesthesia. While I was happy to be there to comfort him, and have him look into my reassuring eyes as they closed, it didn’t feel like I was much comfort, and it was really hard to watch. I’d rather suction him every hour (which we both HATE) than to see that again! It was also hard to FEEL the work in his chest, I could suddenly feel what I sometimes hear in how air moves. And that terrified me for a moment, but also confirmed that putting him through the testing was worth it.
As expected, the pulmonologist called me after clinic today and took the time to explain and answer lots of questions, including reminding me that this is only 1 of 2 parts of the necessary testing. Together, the CT and the PFT will paint the picture of our next few years. So what do we know from Part 1? We know that Struthers definitely has Bronchopulmonary Dysplasia in both upper lobes, inhibiting his lung function. The degree to which the function is affected will be quantified at the PFT in June, but we do know that only about 80% of his lungs are capable of working efficiently. We know that 15-20% of his upper lobe lung tissue is damaged and not working, to put things simply. While there is hope of some recovery with growth, this is likely long term damage that will always impact his breathing. Essentially, BPD means there is scar tissue from either working too hard and/or being forced to work for long periods of time (ventilated) to the degree that the lungs stiffen and become somewhat inelastic and therefore unable to move air easily or in large volumes. In addition, the lower lobes seem to be working fine, and they ‘overexpand’ as he tries to get his needed airflow, and that also will damage the tissue over time. So…add to that a little cold or asthma flare-up, and the still-immature alveoli throughout, and you have a downright scary respiratory distress situation. A situation we’ve experienced too many times this year, and one the pulmonologist said we should expect for years to come. There’s not likely to be visible progress (radiographically) for another 2 years or so, and until then (at least), we should count on having to delicately manage any threats to Struthers’ breathing and support it with drugs and oxygen therapy.
In summary, we don’t really know anything new, except that there is a physiological reason for his inability to get off the oxygen. We confirmed a physiologic reason the tiniest bug sends him in a downward spiral. And that physiological reason indicates that we should continue doing exactly what we are doing, but that we shouldn’t necessarily expect he will be able to wean from the oxygen soon. It confirms that we must continue to be diligent in minimizing his exposure for at least another year, and that’s already resulted in adjusting expectations for travel plans (though we will keep the ones we have for next week). And we can likely rule out some fairly nasty progressive disease processes like CF and interstitial lung disease.
Thankful for whatever answers we can get and the peace that comes with simply adjusting expectations–THANK YOU for your prayers!
We are still amazed and blown away with Struthers’ progress and the ‘escape’ of so much more that could have gone wrong. And until now it has appeared as if we did indeed escape some of the worst effects prematurity has to offer. However, Struthers’ respiratory system has continued to struggle beyond what is expected. Needing oxygen and going home on O2, even for a year or so, is somewhat common, and is expected for even much later-term and some fullterm babies in Colorado. But none of us, including his pulmonologist, gastroenterologist, occupational therapist and pediatrician, expected his oxygen needs to increase more than his size and other development would indicate. None of us expected that he would still be unable to pass a room air challenge in Colorado Springs (he marginally passed one in Denver a few months ago, but it was borderline and he passed out after the 20 minutes, silly boy!). None of us expected that by the time he was crawling, pulling up and bear-walking, these activities would be slowed by untangling an oxygen cord or taking a ‘breather’–literally sucking the skin in between his ribs (retracting) trying to get good breaths.
There’s a medical expression “When you hear hoofbeats, think of horses not zebras.” So the horses of Struthers’ pulmonary issues have been the common preemie diagnoses of Chronic Lung Disease, Bronchopulmonary Dysplasia, and asthma in a reactive little dance. Other horses that could cause the prolonged respiratory distress (unrepaired PDA, aspiration, pulmonary hypertension) were ruled out or fixed. So now that there is no indication of the issues improving to the degree that would correspond with growth, and some indications of worsening…it’s time to look for the zebras.
The first zebra the pulmonologist decided to mention triggered so many emotions for me, and many of you in Leesburg will instantly know why. She wanted to know if he’d been screened for Cystic Fibrosis at birth. Since this is a required screening in Colorado on all newborns, I only assumed so. But apparently the protocol for newborn screens isn’t exactly the same for babies born into the NICU…no heel prick necessary when you have a central umbilical line and are fighting minute to minute for every drop of blood to circulate. And then my pediatrician’s reaction when I asked her to try to locate the screen made my heart tighten. I think she seriously thought that was a clinical explanation, too. One would think I’d know by now that devastating diagnoses don’t have to mean devastating lives…but I still pretty much lost it until the records were located (apparently when you transfer NICU’s, such things can get “lost”). So after some searching, his newborn screen was indeed found to be most likely negative (it was done outside the ‘newborn’ window and only measures one chemical level). While this didn’t make a ton of logical sense to me that she was worried about this, since CF doesn’t run in either of our families, it was enough emotion to just about send me postal.
So in order to investigate other zebras, or assign an ‘abnormal’ horse diagnosis and management, we have two steps. One is a lung CT that will occur tomorrow. They will be looking for the degree of long-term damage as indicated by thickened walls and damage done by his extreme work of breathing. To some degree, they may be able to quantify the functionality of the little alveolar sacs, and that will give us an idea of how much improvement we can expect with just growth. The exam must be done under anesthesia, so we will head up to Rocky Mountain Children’s Hospital in the morning, and the poor guy has to have an empty tummy until they wheel him back to sleep at 1pm. I’ve been grateful to still have breastmilk in the freezer for many little illness bouts, but I’m incredibly grateful that we will have it to keep him happy and full for at least one normal feeding tomorrow morning. Apparently, breastmilk has a much quicker digestion, so I only have to cut that feed out after 9am, as opposed to anything else cutting out tonight. Also again grateful for the g-tube, as I will be sneaking in for a midnight feed for sure.
The second step in our Zebra Hunt is an infant Pulmonary Function Test (PFT), which is scheduled for June 14. This procedure, too, will be done under anesthesia, but at the other Children’s Hospital in Denver. If you’ve ever done or witnessed a child with asthma undergo a PFT, you will understand the sheer amazement that they can do this on an infant who can’t follow directions to breathe out hard and fast or hold their breath. But someone brilliant figured out how to measure the same lung capacity and reactivity on an infant. Struthers will be sedated and placed into a pressure/oxygen-controlled chamber (much like the NICU Giraffe he spent his first weeks in). They will then place him in a vest that performs the inhale/exhale in the proper manner for measurements to be obtained. Amazing. That test and the CT together should give us a better idea of what we are dealing with, and help us manage accordingly.
Technology exists to help us see what is going on!
Excellent physicians and we are excited to see the Rocky Mountain Hospital for Children staff we know way too well!
Continued growth (he’s in the middle of a spurt!) and development
Safe travel, safe procedure, easy recovery
Clear images that provide answers
That Mommy can appreciate time off work and with him, even if it is at the hospital.
Early in our marriage and small group-leading days, we were introduced to the book “Love & Respect”. Its concepts and language have become ingrained in our marriage, and you’ll often hear one of us refer to “stepping on my airhose”, “the crazy cycle”, or “when the issue isn’t the issue”. Who knew when we did that Bible Study 10 years ago that those same phrases would be so applicable to raising a preemie?!?
I recently posted an updated growth chart on Facebook, one that showed a huge jump and a steep slope upwards, after nearly 3 months of stagnation. FINALLY Struthers’ weight has surpassed his month-age! The 30-calorie/ounce formula is certainly helping, and having us bolus through the feeding tube has been a game-changer, launching Struthers over that elusive 20-pound mark! Many of you commented, offering praises, admiration and celebration. And I’m celebrating what I can too! But I know deep down, the issue isn’t the issue. His weight isn’t really the issue. The curve isn’t really the issue. If he’s gonna be small, he’s small, and that’s OK with us! The issue is that the weight is the outward indicator of what we can only hope is happening inside that round little body. The issue is that his lungs are and always will be damaged. The issue is that they are thickened and inelastic. The issue is that while there will some improvement with growth, he will always have respiratory issues and the smallest cold will take his compromised lung capacity down even more. And it feels like a ticking timebomb to do what we can to support that growth while his lungs can still generate new lung tissue and alveolar sacs. In essence, we are still in a race to the starting line, and so many things can throw us off course along the way. So the name of the game is to get and keep his lungs at their very best. To use an optometry term, we need to get him to his “best correctable”. We are doing that with a cocktail of inhaled steroids, constant oral prednisone, minimized exposure to irritants and illness (aka avoiding “the crazy cycle”), caloric intake and of course, oxygen (“the airhose”).
Last week’s pulmonology appointment was sobering in so many ways. With another failed Room Air Challenge (a marker for leaving the NICU), cancelled Mother’s Day plans for a weekend in Breckenridge (10,000-ft elevation), and warnings to limit the travel this summer, I knew that the growth we were celebrating wasn’t really the issue. It has taken me 18 months to truly digest that the issues aren’t always the issues. It has taken time, research and experience to understand the complicated course Struthers is on. By all appearances and most statistics, we should be in the clear now, off oxygen and able to let our guard down. But, alas, the issue isn’t really the issue.
As always, thanks for your continued prayers. More detailed explanations of Struthers’ clinical condition can be found on the Resources page.
Thank you all for your sweet comments, thoughts and prayers from the last post. I do have to say that in addition to the miracle I witness everyday in Struthers, I see God working through these posts and through you all. I feel it as I write from the heart at the same time trying to objectively explain the sometimes unexplainable. I feel it as I watch in astonishment the number of visits to the page tick up. I feel it as I read, digest and treasure each and every comment. And I know it as the very people I am thinking of as I write send me a private message after the post :). God IS good all the time, and he brings people in and out of our lives in beautiful and poetic timing.
So here’s our update since the last posting:
Struthers has transitioned beautifully to his new weekday care routines, with a nurse on Monday, Tuesday and Friday, Christiana on Wednesday and mommy usually working from home at least part of Thursdays.
It has been a long while since I’ve used the pulse oximeter daily on Struthers…for the same reasons I mentioned in the last post. It’s too easy to get caught up in what numbers are or should be. And he’s already tethered by an oxygen tube from one end, why would I attach wires to the other end and inhibit the very motor skills we’ve been trying to encourage? I’ve known when I needed to pull it out and check, and usually by the time I’m doing that, his oxygen saturation levels are indeed quite low (otherwise I wouldn’t have had indication to use it, right?). He’s also just a happy, contented child and a little sneaky–he will hold his levels up, but work really hard to do so…until he just can’t anymore. So…with the introduction of home nursing, we are back at checking the oxygen saturation levels about 4 times a day. And what we’ve found over the last few weeks has been shocking, heartbreaking, guilt-inducing, and discouraging. It’s not awful and there’s an easy solution of just turning up a dial, but Struthers is just living pretty much constantly hypoxic (which likely explains the growth thing) on the baseline of 1/8-liter O2 we’ve been giving him for months. Every morning when we’d get him up, he was very low…like high 70s, low 80s low. And mind you, his baseline O2 at night is at least twice that of awake/daytime. Sigh. Then we’d crank it up and he would be back above 90%, but could only maintain that if we had his oxygen cranked up to between 1/2-liter and a full liter. After a week of switching tubing, concentrators/filters and tanks and these numbers being the norm, (and Struthers not really being or acting sick), I called to just update the pulmonologist. And she said, “I’ll meet you in my south Denver office.” As suspected, his lungs sound fairly clear, he’s not wheezing consistently, not aspirating. But he’s still just not oxgenating well. And he does GREAT when we give him that extra little help. We’ve checked and ruled out the most obvious causes–pulmonary hypertension, PDA, aspiration, reflux, etc. So it’s time for more extensive testing.
Fortunately, http://www.childrenscolorado.org/departments/breathing-institute is one of the few places in the country that can do full infant Pulmonary Function Testing. We will do that and a CT, both of which have to be done under sedation. The pulmonologist expects it to show the the Bronchopulmonary Dysplasia and Chronic Lung Disease are still severe. And that answer will confirm that we just have to keep doing what we are doing to support with oxygen, steroids and inhaler cocktails until he is bigger and stronger. The other thing she expects to learn is exactly HOW reactive his airway is, both to closing off and to opening up with specific bronchodilators. I’ve mentioned before how much I love our specialists. She looked me in the eye, saying, “I’ve treated hundreds of preemies who come in just like Struthers (she’s seen him since the week after we discharged from the NICU). Most of them are off oxygen by now and respond very well to half the regimen he’s on. But I’ve had a few who charted just like him, got sick all the time, stopped growing, went the opposite direction in their oxygen needs…but it’s just for a time. It’s just a waiting and growing game. I tell you this to encourage you…that the treatment is really the same, we just have to wait a lot longer and help him grow. He will be running around just like those few patients before you know it. And we will rule out a few other things and get all the answers we can in the meantime.” Love her.
THEN, just HOURS after seeing her, Struthers came down with a nasty cold. We EXPECT numbers to be down when he has a cold and you can hear him breathing. Anyway, it was a rough couple days, but we seem to be on the back end of that, ever grateful for a standing “Activate the Mobile ICU” gameplan, which includes starting the prednisone that remains filled and in the cabinet for such a time as this and initiating “Q4” (every 4 hours) nebulizer treatments.
Now, for the GI/growth update: the 30-calorie formula is doing the trick! Struthers weighed 18lbs, 15oz at the visit last Thursday, and then 19lbs, 2oz early this week! So we are not yet on continuous feeds, but have orders to continue the 30-calorie formula and continue ‘bolus’ feeding it through the tube when he does not take in a minimum by bottle. That being said, he then got sick and I wouldn’t be surprised if we are back in the 18’s again. Oh well, our two steps forward, one step back is a fun little dance now!
Thank you for your continued prayers AND for allowing me to share this adventure with you. It sometimes feels like a lonely road. But after each post, I feel as if I’m suddenly joined in that road with all of you! Once again, you are all a beautiful analogy of my walk with God…I know you’ve been there all along pulling for us, you’ve just been waiting for me to reach out and say I need you. THANK YOU for being His reminders of that here!
It began as a NICU mom, but it continues as a preemie mom–the numbers game. You find yourself obsessing over so many of them–oxygen saturation, ounces and calories in, weight, length, head circumference, age at so-and-so milestone, how old is your kid, where are they on this developmental scale or that. You give in to the fallacy that it’s one of the things you can control–except you can’t really. So like anything else in life, the only thing you can control is your reaction to it. So you do your best not to let yourself ride every up and down of the roller coaster, to not obsess about whichever number has you most concerned on any given day. And you thank God for having numbers to obsess over.
Three weeks ago, the numbers we were most concerned with were weight. In the last post, I told you Struthers was just barely 18 lbs and hadn’t grown in three months…well, right after that post, he actually went back down to 17.5 lbs and has lingered there, falling further and further off the charts I’m not supposed to pay attention to, but every doctor shows them to us and uses them to make decisions. So after our last round of appointments, it was decided that we would switch his formula from an infant one to a higher-calorie toddler one, but we were limited to the only corn-free option on the market. Which brings us to the next set of numbers–
Most formulas are 20 calories/ounce, and Struthers generally takes 16-20 ounces per day, totaling 400 calories on a great day. Now we’re on a 30-calorie ‘complete nutrition substitute’, which gives us a base of about 600 calories per day. He’s eating some ‘solids’ (aka “a bowl of mush”), but even with peanut butter, whole milk and coconut oil-loading, his maximum calories he will take in on a day is about 800. We’ve learned that the increased-calorie formula also means he doesn’t really have an appetite for the solids, so it’s a balance. A kid Struthers’ age (or even his adjusted age) needs AT LEAST 1000 calories a day just to maintain. And that’s not even taking into consideration growing, working hard to breathe or exertion with our latest fun–crawling! For catchup growth, our pulmonologist wants to see him at 1200-1400 calories per day. And while none of our physicians want us ‘calorie-counting’, they agree that his basic intake is just not enough. But anything more than that really does make for days consumed with practically force-feeding. Enter, next set of numbers…
We have a specialist appointment tomorrow during which it will be decided whether Struthers will go on continuous nighttime feeds through his G-tube. His transition to the new ‘shake’ has been wonderful, and so much easier than previous transitions. So I wouldn’t be surprised (but I will cry) if tomorrow’s scales show us a 19+ after 4 weeks. And maybe, just maybe, that number will allow us to avoid the continuous feeds for now and stay the course. Or even better, go back to a normal-calorie toddler formula and work on our table food consumption! All of which would be nice as we approach the end of our Medicaid eligibility year and the new plan year from my employer’s insurance plan. Enter, numbers (and God) again…
So we were discharged from the NICU (originally) on February 27 of last year, and that began our year on Low Birthweight Infant Program. This program made Struthers automatically eligible from birth-1 year (post-discharge) for Medicaid without the income requirements and crazy paperwork. So in March, it was time to go through the evaluation process for whether Struthers still qualified for the assistance. God’s timing is perfect. At the same time discussions were beginning about whether and when to start continuous tube feeds and “failure to thrive” was thrown out there, here we were being evaluated for whether Struthers’ still qualified for Medicaid. And while we have primary private insurance, I can’t tell you how many times I have been oh-so-grateful for the Medicaid secondary that allowed us some choice in where Struthers gets his care and provided us with formula when we figured out that only the most expensive one on the market was corn-free. So I was nervous about losing this, but also thought it was probably for kiddos with much higher needs than Struthers’. Then, during my first appointment with the case worker, as she reviewed his medical records and 4 (!) unscheduled admissions since the original discharge, she said, “Well, you’re eligible for 14 hours of home nursing care a day, you’ve been using that, right?” Wait, WHAT?!?
So shortly after the evaluation which immediately deemed Struthers disabled (continuous oxygen use and G-tube made it automatic), he was again Medicaid-qualified on a different non-income-based waiver. During yet another evaluation, it was determined that he also qualified for the full nursing care (not even CNA, which would pay me to take care of him), and we began looking into the logistics. I had a lot of hesitations about it–I didn’t really want Struthers’ life to be about medical any more than it already was. I didn’t want him hooked up to the pulse oximeter all the time. I wanted him to crawl and play. By all appearances, he seems so ‘normal’ and I find comfort in maintaining normalcy for him. And I love our nanny, Christiana. But again, God’s timing is perfect. While we were presented with this opportunity, Struthers came down with yet another cold, and this time he refused to eat or drink ANYTHING for almost 24 hours. (Never thought I’d cry at no wet/dirty diapers!). And Eli was out of the country. So while working fulltime, I spent the evenings manually pushing tube feeds for the better part of a week, and started thinking much more about that nursing help. The more I thought and prayed about what to do, the clearer it became, and we decided to walk through the door God had opened. We found a local agency that specializes in pediatrics, and they recruited someone just for Struthers. Beginning last week, Struthers has a nurse with him 3 days a week while I’m at work, and he still gets to see his “Bǎomǔ” Christiana at least one day a week too!
Fast forward to the last week or so, and God has confirmed just what we needed to know in making this transition. Last Thursday, Struthers choked (he chokes a lot and does this ‘fake dry cough’, but this was the real deal and it happened while I was still home) and Christiana swiftly sprang into action, delivering a Heimlich Maneuver that got our baby breathing again. Let’s face it, I was absolutely no help in this situation, and I was never so thankful for Christiana and how well she knows Struthers–well enough to almost see it coming as it happened and know he wasn’t ‘fake coughing’. I didn’t think Struthers was really sick over the weekend, but I did note his coloring being a little off, how tired he was getting quickly, and how hard he seemed to be working breathing (retracting). I thought perhaps he had aspirated a little with the choking, but he seemed OK and I couldn’t hear any crackles in his lungs, so I didn’t worry too much. On Monday morning, Corina (our nurse) did her assessment just after I’d left for work. Struthers’ oxygen saturation was low, like 79% low. So having a nurse at home meant I didn’t need to rush back home right away–she could troubleshoot with oxygen flow and nebulizer treatments first. And that she did…his oxygen needs have been increased this week, and he was on a full liter (usually 1/8 daytime) for 2 days, but his numbers have looked much better and with proper management we avoided the reactive escalation in his lungs. I also mentioned about the 16-20 ounces of intake, with 20 ounces being a ‘good day’. We really have no room to slide off this, so when Struthers doesn’t finish his bottles (about 50% of the time), Corina is able to do a tube feeding that ensures he’s meeting a minimum calorie count for the day and I don’t have to spend time in the evening force-feeding.
The Lord is amazing in His Omniscience and Timing. Something I didn’t think we needed a few weeks ago has given me a huge relief and the ability to just be “mom”. I didn’t really have a comparison point for what was normal, and it’s easy to dismiss it because all infants/toddlers/kids are lots of work. But I’m just now realizing how much time I was spending (in addition to fulltime work) ordering and maintaining medical equipment, supplies, coordinating doctor’s visits, tests, evaluations, and therapy appointments. Now it’s time I can actually enjoying Struthers for who he is, not just messing with tubes or coaxing him to eat enough. All in all, I’m so grateful for everything about this transition. I’m grateful that Christiana can still have some time with Struthers, who she’s been with and loved from the very beginning. I’m grateful that she will be able to spend some time bonding with her new little one soon, and that she’s been able to explore her talents and build her mommy-confidence skills she will soon need. I’m grateful for the incredible friend she’s been to me, for the times she’s wiped my tears, encouraged and understood when I didn’t want to walk out the door and leave. I’m grateful for a nurse who seems like part of the family already, who seems to genuinely love Struthers and delights in doing all the ‘nursing’ things I didn’t realize I was even doing. And I’m so very grateful to both of these ladies for just loving Struthers and helping us give him what he needs.
Qualification for Medicaid secondary insurance, home nursing care and that it all fell into place beautifully!
Struthers is crawling all over the place now!
Eli had a complicated but successful hip surgery a week ago and is recovering well.
Weigh-in and gameplan setting tomorrow!!!
Stay healthy, breathe easily for Struthers!
Continued recovery and encouragement for Eli, who’s not used to being so inactive 😉