Our Ultra-Marathon

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!