So much has happened since I last updated you, so here goes an attempt at a summary:

• Broncos win the Superbowl!  This just happened to be about the time Struthers learned how to respond and get cheers when we said “Touchdown!”
• After getting over the worst of the RSV and settling back in at home, Struthers did have a double-ear infection that made my baby absolutely miserable.  Fortunately, it cleared up quickly with antibiotics.  Is it bad that I was grateful for something as normal as an ear infection?  WAHOO–Normal baby issue!
• Struthers’ laugh continues to be a joy…check out the video, and I dare you not to laugh along with him!
• Struthers’ Adjusted First Birthday was February 12.  That had an entire swarm of emotions around it, the biggest of which was the realization and GRAVITY of exactly how much time he should have still been developing inside me.  There is an awful lot of time and life that happened between November 14 (his actual birthday) and February 12 (due date/adjusted birthday).  And last year, while we were in the middle of it all and still in the hospital counting each day, ounce and step to going home, we didn’t realize exactly how long that three months was.  One friend pointed out to to us how many thousands of dollars it took to do what God created our bodies to do. Amazing Grace.
• Struthers is crawling!  He still never rolled, but he’s definitely figured out how to get himself from one place to another!  He LOVES books (especially LLama Llama Red Pajama), music, being outside, Pat-a-cake, and when Daddy sings about supposing his toes-es are roses 😉
• I’ve mentioned before how very special the relationships we formed in the NICU were.  And out of respect for their privacy, I’ve rarely gone into detail or identified them on Caring Bridge.  But just this week, I had the honor and privilege of being in the delivery room with a fellow-preemie mom as she delivered her FULLTERM daughter only 15 months after her 30-weeker triplets.   Her graciousness (and her husband’s) in sharing that experience is…well, there are no words.  I am blown away with gratefulness, beauty and still trying to comprehend how God orchestrated a beautiful friendship out of quite frankly an awful time.  And the bond that was already so strong out of shared trauma, well, now it’s stronger out of shared NORMAL experience.  It’s as amazing and beautiful as their 4 girls.

I know it’s easy to look at Struthers, who seems to be maturing overnight and looks so healthy, and think all is well.  He does look great, and he is doing well (by the grace of God). But the fact is that prematurity isn’t a race that ends with discharge from the NICU.  I honestly thought I was done with our marathon then, and other things would be expected but minor after that 105 days.  But I’ve realized our race is an ultra-marathon of complicated issues that may take years to sort through.  So I’m going to attempt to explain (what it’s taken us months of living it to understand) the major issues we still find ourselves dealing with.

Think about how rapidly fullterm infants grow and develop, and multiply that for what happens in utero (a whole body grows in 9 months!).  And when the most rapid part of growth in the womb doesn’t happen in the womb, the growth cannot be expected to happen at the same rate, despite all the medical advances.  So Struthers, who was three months old when he hit his due date, was in some ways much more mature, and in others much less mature, than a baby born on his due date.  He was socially aware and much more interactive than a newborn, because he had seen and felt us for three months.  But he was still struggling to breathe, and he hadn’t really learned what term infants generally know instinctively, such as suck, swallow, breathe.  So remember that Struthers will have two ‘ages’ until at he’s two.  But it could take 5-6 more years before he is caught up entirely.  The adjusted age is supposed to help us benchmark and develop expectations for when he will hit certain milestones.  It’s not really how it works, especially for micropreemies or VLBW (Very Low Birthweight Infants) for the aforementioned reasons.  I remember hitting the 6 month point ADJUSTED age (9 months actual) and being devastated he wasn’t doing things a three month old should.  But it’s just not that simple when these babies are working so hard to do the basics of eating and breathing.  I recently came across this blog posting that summed up the parental expectations part well:https://anordinarymummy.wordpress.com/2016/03/02/actual-age-corrected-age-who-knows-what-age

That gets us to the next update:  Struthers hasn’t had any weight gain in about 3 months, and just yesterday he hit the 18-pound point.  Sometimes that’s OK for infants, who will tend to grow in spurts of length, then weight alternately.  But those normal spurts are reflected in average growth curves, and Struthers is now falling further and further away from the curve.  Again, sometimes kids are just small.  But he has average sized parents, and he was making great catch-up growth jumps for awhile.  So then we look at his intake (what he’s eating), and while he’s a great little eater, he fills up or gets tired quickly, and is only taking in about 50% of the calories he needs to continue growing, despite making calorie-loaded food and drink available ALL DAY LONG.  It’s clear that his miraculous little body is prioritizing those calories for cognitive and language development,which is exciting and relieving, but he should be getting enough calories to allow physical growth too.  We’ve been watching it closely, and it was decided today that we will likely be utilizing his G-tube more.  More meaning rather than just supplementing with bolus feeds, we will put him on a pump that will provide continuous drip of much-needed calories, with the goal of having him hit his curve in 2 months, and perhaps be in the middle of it by his 2nd birthday.

So, perhaps that helps set the stage for understanding why Struthers still needs the oxygen.  If we can get the growth thing taken care of, it will really ‘open up the playbook’ in managing his chronic lung disease, or bronchopulmonary dysplasia (BPD).  Struthers has severe BPD, and his outcomes will be directly related to physical growth.  So the funny thing is that his pulmonologist is more concerned about his growth stagnation (because his lungs will not improve without growth), and his GI specialist is more concerned about the fact that he’s still on oxygen 24/7.  I guess the GI specialist sees lots of tiny kids with trouble growing, and the pulmonologist sees lots of kids on oxygen.  So Struthers can in fact do OK off oxygen for periods of awake/alert time.  But he’s working hard (as indicated by the crawling video when he WAS on O2 but has to take a break with big shoulder-heaving breaths), and that means he’s burning calories just working to breathe.  So it’s all related.  When he’s not sick, the oxygen is just helping his body be able to burn calories by growing or learning.  If we take the oxygen away entirely, he probably wouldn’t turn blue or be in acute distress quickly, but other development would likely stop.

Someone asked me recently, “So what is his diagnosis?”  I had a hard time answering, because I look at my happy and seemingly healthy little boy.  And I’ve come to intuitively understand how it all works together.  So if I separate it in medical terms, “Chronic Lung Disease”, “BPD”, “Asthma”, “Reactive airway disease”, “Failure to thrive”, ” Corn intolerance”, “Delayed gross motor”…it all sounds so…sick.  For the most part, we try to live a normal, healthy life.  We have a few more appointments, specialists and pieces of equipment, but that’s just part of our life now.  And we embrace it, enjoy it, and are so very thankful for our blessings.

Praises:

• Life is exciting with a talkative, musical bookworm on the move!
• Excellent physicians and therapists managing his care!
• Quick recovery from the RSV, which could have easily been devastating.

Prayer Requests:

• Continued growth and development!
• Cardiology checkup on Monday (for Struthers–checking to see if his PDA has closed up and whether his oxygen needs are from persistent pulmonary hypertension)
• Make it through the rest of cold/flu/RSV season without illness!

Facebook is always reminding of moments I’ve forgotten. Some good, some bad, but they all bring up some kind of emotion. On this day a year ago, I snapped a photo so that my nieces could see how small their new cousin was-the size of their beloved Bitty Babies. On this day a year ago, Struthers was over 2 months old, but he was still supposed to be inside me for another 3 weeks. And on this day, I’m overcome with the sweetness and joy and restorative peace of rocking my son to sleep at home, and having him reach up to tell me to keep singing the same songs I was probably singing him in the NICU a year ago. So blessed.

We have much to be grateful for this week, but we are certainly excited the week is coming to a close. Struthers was finally released from the hospital on Tuesday, and he’s continued to improve each day.  We were sent home with yet another DME (Durable Medical Equipment) order for suction. As I’ve mentioned previously, Struthers has a hard time coughing up the thick mucus, and we are desperately trying to keep it out of his lungs. So after being super excited to be home, he was thoroughly unimpressed to realize the suction followed him home. He hates it, but it’s making a huge difference, and I think it could be what keeps us out of the hospital in the future as well. Struthers looks great, no fever, and is settling back into needing his nebulizer just twice a day now. He’s enjoyed playtime with his Gramma Shell, who has been an absolute lifesaver this week.

So if that doesn’t sound like enough, Eli had a surgical shoulder repair on Wednesday. It was planned for a few weeks from now, but the surgeon had a last-minute opening that they asked us Tuesday if we wanted. So…as I’m discharging with Struthers from the hospital, Eli was at his pre-op appointment getting a sling fit. The surgery to repair a torn labrum went well, and was the result of dislocating his shoulder while skiing last winter. It’s also the first of two surgeries, as he also has a torn labrum in his hip he’s been walking around on for quite awhile. That surgery will be sometime after the arm is healed and strong enough to be on crutches for the next surgery. He’s making a fairly quick recovery, but he will be in the sling and physical therapy for weeks. Struthers is looking forward to having his Daddy be able to make him fly, zoom and dive like an airplane again!

Praises:

• Struthers is out of the hospital!
• Eli’s surgery was a success and the timing worked out.
• Eli’s mom was able to help us out with everything from meals to playing patty cake for hours on end during a few important meetings Cami had this week.

Prayer requests:

• Continued healing for Eli
• Continued healing and strength for Struthers.
• Continued sanity for Cami 😉

For those of you  not on Facebook, let me catch you up:

After 4 days of trying to stay on top of this nasty virus at home, our PCP decided on Friday to admit Struthers to the hospital.  Admittedly, we get used to ignoring his home alarms sometimes, because when he gets squirmy or kicks, they will lose signal.  But at 6am Friday morning, he alarmed and I could see on the monitor that he was still fast asleep, not moving.  So Eli and I both jumped up and ran upstairs, where we saw his pulse oximeter reading as low as 68, hovering in the 70’s, with a really good signal.  So I cranked up his oxygen as high as 1-liter (which is our hospital trigger-point), and his numbers still only went into the 80’s.  So we ended up waking him to give him a nebulizer treatment and he recovered quite nicely, bringing his numbers back to over 90.  We already had a pediatrician appointment set for first thing Friday morning, so we went, halfway expecting they would send us to the hospital.  The doctor was on the fence about whether he needed to be in, since he was responding so well to the nebulizer and we had a lot of capability to monitor/treat from home.  But as he talked about it more, he decided the one thing the hospital could do that we couldn’t was suction.  And the name of the game would be to keep this stuff out of his lungs.  Because it would most definitely be pneumonia if we let it get there, because his lungs are just not strong enough to cough it up.

So…long story short, that’s where we’ve been since Friday morning.  It’s been up and down since, but turned a corner for the good yesterday.  The virus has not gone to his lungs, but it’s taken a lot of proactive ‘stuff’ to keep it from getting there.  He’s been on a nebulizer cocktail (3 drugs) around the clock, sometimes as close together as every 2 hours, depending on when he begins wheezing or crackling again.  He’s getting prednisone via his G-tube (thank goodness!) and is still on his maintenance regiment of another 3 inhaled steroids and bronchodilators.  We’ve been weaning everything down since yesterday, and as of tomorrow we will be off the prednisone entirely.   He’s such a happy, content little fella that it’s often hard to see how sick he is.  He fools us lots, with those bright eyes and smile, then he just tanks and keeps his numbers up but works really hard at it.  As I was typing this, his hospitalist called and they will keep him in hopefully just one more night, and they’re trying to get us a home suction unit.  We were all borderline on whether he could come home today, but decided to give him another day in to just keep suctioning that ever-thickening ‘rubber cement-like’ icky stuff out of him.  Also, he shared his illness with Mommy when he coughed and sputtered directly into my face, and we just can’t risk my giving it to him again.

PSA:  This virus (and many others) lives on surfaces for 8 hours!!! So wash, wash, wash!!!

3 things we are grateful for:

• Eli has been able to give me some relief and time to recover at home.
• Struthers is his happy, smiley self, even when he sounds like a freight train!
• Cami got some good rest yesterday and slept well in her own bed last night.

3 things to pray for:

• To not have this thick mucus get into Struthers’ lungs and settle.
• To be able to get the home suction unit and bring him home as soon as tomorrow.
• To heal Cami and protect Eli and work things out so that we can take care of Struthers.

That thing I’ve spent the last year fearing.
That thing that caused us to stay locked up inside for holidays, with no shopping, Santa visits or gatherings.
That thing that kept us from introducing Struthers to our Georgia family and friends until he was nearly 8 months old.
That thing that has us jumping through insurance hoops and showing up at the pediatrician’s office for a once a month ‘immunization’.
That thing I said we absolutely could not get this year…we have it.
RSV.  I hate it.
I hate that word.
I hate that it has my little man coughing, gasping and wheezing all night
I hate that his oxygen needs are up.
I hate that his regular pediatrician is out of the country.
I hate that even when we now KNOW he has it, we are still fearing what it will do to him.
And I love him so much.
I love that his pulmonologist called me last night at 9pm to put together the game plan.
I love that we have all the medical equipment we need at home.
I love/hate that he puts his own nebulizer mask on and smiles because he knows it makes him feel better.
I love that God is in the miracle business, and that you all have witnessed what He’s done already.
I love that I can ask you to pray.
Pray for our little man’s lungs.
Pray for his healing.
Pray that he continues to take in food/liquid.
Pray that he is where he needs to be with those best equipped to take care of him.
Pray for my heart and strength.
We can do this, God can do this.  We’ve been through much worse, I hope.

 DRAFT FROM NOVEMBER 23 NEVER COMPLETED/POSTED:

It seems as if I’m always beginning these posts with promising to write more later…but for now, here’s a quick update:

• Struthers is 17 pounds and 27″ long!!!
• He had a minor surgical procedure to repair a birth defect last week, and did beautifully!
• We will be on oxygen and keep the G-button for feeds as needed through the winter, and begin discussing removal of these no earlier than April.
• Until then, we walk a cautious tightrope with when and where we venture out with him, so shut-in season has officially begun!

And I PROMISE, I have lots to say about the last few weeks, but in the meantime, take a look at the newly-posted photos and captions, and that will catch you up a little bit.

When I woke up this morning, I had an entirely different direction this posting would take in mind.  Then I attended the Newborn Hope fundraising luncheon, and it was headed a different direction.  And now again at nearly midnight on the eve of Struthers’ birthday, it has yet again changed direction.  But I guess that summarizes the last year altogether and is rather appropriate, as emotions and directions and physical condition change rather quickly when you have a preemie.

So the things I was going to tell you this morning:  I was going to tell you that I’ve been struggling.  Struggling with the fact that everyone who finds out we have a preemie asks the invevitable questions surrounding going into labor.  I never went into labor.  My water never broke.  I wouldn’t know what a contraction feels like. We made a decision to essentially rip my son out of my body because he was better off out than in.  It was that or…  So until now I’ve felt quite separated from the majority of preemie families and stories.  The circumstances make it feel like we had a choice…and that allows for wondering whether the right one was made as I watch the ‘ramifications’ unfold.  And I blame myself for my son’s suffering.  I can know  in my head that we really didn’t have a choice if we both wanted to survive, but I still wonder.  But my realization through this is that perhaps it’s not that different from every other preemie mom or even every other mom.  We will all spend motherhood second-guessing and what-iffing.  And that’s just what motherhood is about.  At the end of the day, my body failed me and brought our son into the world way too soon.  But the emotions of that are exactly the same as every other preemie mom, even if circumstances were quite different.

And the emotions during the lunchtime fundraiser:  I unexpectedly “lost it” twice…Once when these cute little girls went skipping down the runway.  Skipping.  And I could actually for the first time imagine Struthers doing just that.  The overwhelming emotion associated with the realization that we escaped so much…well, God has spoken mightily and no words I have can add to that.  The other moment was when one our favorite NNP’s was honored.   A family summed it up by pointing out that she made  everyone feel that they were the only family in the NICU.  No truer words were ever spoken and to hear that another family felt exactly the same way was amazing.

Tonight:  After Struthers was asleep I began preparing for his birthday party tomorrow.  And I went to hang the STRUTHERS banner that I made for his NICU bay.  And it kept falling down.  Four times I rehung it, and four times it fell.  Then I noticed it still had the medical tape on it from our NICU days.  And I recalled that we always had a hard time getting it to stay up.  It took layers, different methods and a whole team to pull it through.  And there you have it…perfect symbolism of this last year.  I’m continually amazed at what God has orchestrated.

Tomorrow we will celebrate what we didn’t really get to last year, and there’s overwhelming gratitude but also sadness and ‘processing’ in that.  Your prayers are always felt and appreciated.

This is just a brief update, but I promise to write more in the coming week!  

• Struthers is now 11 months old and weighs 16 pounds, 8 ounces and we’re on the ‘chart’!
•  After a brief time of being off oxygen during “alert, awake” time (excluding feeding, carseats or when he is retracting or wheezing), we are back on oxygen 24/7, and really have not been able to wean him down in volume (1/8-liter awake/alert, 1/4-liter sleeping or eating).  Struthers was just working too hard off of it, even for small amounts of time, and the time without it set us back a bit.  It required 8 days of prednisone to get him back to a reasonable baseline.  The on-call physician’s response to my Sunday afternoon call was, “Well, it sounds like you have a well-equipped mobile ICU there–Give him the nebulizer, oxygen, inhaled and oral steroids and we will touch base every hour on the hour until he’s better or we’re sure we need to admit him.”  Have I mentioned how much I love our docs?
• We still have the G-button as well, but we are using it for tube feeds less and less!  MAYBE 2-3 times a week we utilize it to get him his needed caloric intake for the day, but we will also keep that through the winter.  The thought is that they don’t know how he’ll react if he gets sick, and he doesn’t have any room to slide backwards on the growth front, as that affects everything else too.
• Struthers will most likely have a minor outpatient surgery coming up soon, likely mid-late November right after his birthday…more details on that later.
• We are still eating homemade purees, with avocado, green peas, parsnips, pears, peaches, and oat cereal as favorites!  Eating still involves working on strengthening the jaw muscles, working with texture and coordinating swallowing.  We will have an upper GI and swallow study later this week (Thursday) to evaluate whether he’s still aspirating and/or refluxing.  Either of those two would most likely explain the inability to wean off the oxygen.
• He’s finally using his arms and hands much more lately.  He still doesn’t push his head up or prop up on his arms during tummy time, but he has managed to twice get himself from his tummy to his “happy place” flat on his back.  He can sit unassisted for short periods of time, but not long, and I think he can’t breathe well that way and just gets tired from trying to do so.  Occupational Therapy continues weekly, and the amount of progress made from week to week is sometimes astounding, and sometimes discouraging.
• The one area of development NO ONE is worried about is this kid’s verbal skills!  He LOVES to sing and talk…and from the clarity, projection and VOLUME of his voice, you’d never know he struggles to breathe!  He now has mastered “KeeKat”, “Dog”, “Bababu” (Baby Beluga), “All Done” (generally reserved for Ms. Lori, our OT, or whoever is making him do strengthening exercises), “Dada” and “Hey Dad”.  I say mastered, but really, it’s just our interpretation, but I have to say it seems to fairly consistently mean what we think it does.  He can’t say music yet, but he gives us the sign for it ALL THE TIME!  Then the sign that we correctly interpreted is generally a broad smile when we turn on music or sing.
• Favorites:  “Baby Beluga” “What does the {insert animal} say?”, Daddy, bathtime (can you believe it?!?), being outside, Einstein and Fiona, anyone who smiles at him, “I am a Bunny”, “Brown Bear, Brown Bear”, and pretty much any small book he can  hold and turn the pages and exam table paper…go figure, he sees it enough!
• As always, thanks for the prayers!  Hugs–

This blog post title and its content has been swirling around in my head for weeks.  And yesterday, it became more clear and more final with the first visit to my Cleveland Clinic-based disease specialist since the pregnancy.  For a little background, see God’s Plans.  It’s not comprehensive, but the gist of it is that I have a nasty vascular disease that caused an ischemic stroke in 2006 and has resulted in several aneurysms and 8 interventional angiograms requiring repeated “fixes” and long-term damage to my renal and carotid arteries.  I guess the miracles began then…because here I sit typing.  And I’m a mom…

So we were on the way to church on Father’s Day and I looked over at Eli, then back at Struthers in his carseat, and back at Eli.  “Can you believe we are actually headed to church on Father’s Day with a kiddo in the backseat?  You know, those Mother’s Day/Father’s Day sermons we’ve struggled with for years are now a little more relevant instead of just inducing the pit-in-the-stomach sadness…” I trailed off.  “Yeah,” Eli quietly said.
“What’s wrong, hon?”
“Well,” he began, “Did you realize that there was a 1 in 16 chance I’d walk out of that hospital without EITHER of you that day?  And a 1 in 4 that I’d walk out with just a son and no mom, or you and me with no son?”
“Hmmm…no.” Silence.
“Well, just look at what doctors told you about the probability of dying or suffering a major ‘morbidity event’ during the pregnancy, and look at preemies born at his gestational weight.  There you have it…there was a one in four chance that we would not have the life we’ve dreamed of.”
I joked about my “Numbers Guy” and mumbled something to the effect of, “Leave it to you to have figured that one out…”, and I got real quiet.  I’m not sure I heard any of the Father’s Day sermon that day, because my mind was spinning.  And it has continued spinning for weeks over this.

With each one of Struthers’ appointments becoming more and more like real ‘well-baby’ visits, the specialist appointment frequency dropping off, and really with each little milestone my little one-pound miracle reaches developmentally, I become overwhelmed with the grace of it all, the Bigness of it all.  And yesterday, as Dr. Gornik told me that my scans looked nearly identical (to the 10th of millimeter) to those taken last May, after hugging me and proclaiming with relief that she was just so glad I was ‘here’,  I am again overwhelmed with the improbabilities of it.  Just over a year ago, I spent two full days in Cleveland being warned about those ‘morbidity events’ (as a best case scenario), and the words transplant, incapacitated and death were mentioned, and numbers and percentages were assigned to my greatest wish.  But after all that information was digested, we learned it was out of our control anyway.  And the miraculous pregnancy that wasn’t supposed to be stressed my body, my vessels, my organs to the max…so much so that my body used the organ created to sustain my child to keep me alive too.  And for all of that, my vessels are functioning just as they were before all this and my kidney function is back to normal?  Amazing.  Overwhelming.

I think that I’m just now dealing with the emotions of it all, and I’m still sad over experiences lost.  But the way I figure it, the day I stop processing is probably the day I stop growing and learning and leaning and depending on the One who’s truly pulled us through all this–according to His timing and plan.  So who am I to play the numbers game and wonder what if?  Today, I’m just overwhelmed with wonder and gratitude and an ever-increasing sense that God is doing something even bigger with us than we have seen yet.