Author: Cami Bremer (Page 3 of 5)

It’s the first time in MONTHS that I’ve been up in the middle of the night…I guess I should be thankful for that! But tonight/this morning, I find myself awake and pumping while Struthers sleeps soundly so I might as well use the time to update you on a lot that has transpired over the last week!

We had four specialist appointments over three days last week, and getting to each of those on time and in one piece, while not missing a beat with work was quite the accomplishment! We are getting used to the oxygen and being ‘out’ a bit more, with a newfound respect for all our friends with multiples–HOW do they do it?!?! I’m just now mastering new-parent skills like changing diapers on the go, feeding in the backseat of the car (parked of course!), pumping on-the-go, walking into an appointment or church with just the bare minimum of a diaper, wipes and feeding tube in my purse instead of hauling in the loaded down diaper bag…after all, there’s enough ATTACHED to him, WHY would we carry any more than we have to?!?

So here’s the rundown of each appointment:

• Surgical followup with Dr. Shipman: His G-button site looks better after now two silver nitrate treatments. The silver nitrate just helps the raw edge of the skin around the tube kind of scab up instead of produce more skin cells (granulation tissue) that our body naturally does in order to close/heal any wound. The button itself is a piece of plastic that sticks through the skin, so until it is out, you want to prevent the body from doing its natural ‘close this up’ thing. We change his dressing site daily, and I alternate using disposable split gauze pads and these cute little fabric ones with elephants, frogs and chevrons I found on Etsy (they’re much more absorbent). We are still using the tube for about 2-3 feedings per week, really only when Struthers conks out early and just needs the additional calories for the day. We use it mostly to vent and allow air and stomach acid to escape…things babies can normally do through burps or spitup, unless they’ve had a Nissen that keeps things from coming back up. The tube will likely be in place for another 6 months or so, but once we get to the point that it’s not being used at all over a few weeks, it will be removed. For now, Struthers doesn’t even seem to notice it, except that he kind of plays with it and spins it around as he’s discovering his hands…I guess that answers my question about whether it pulls or hurts him!  Just to clarify, there are multiple types of infant feeding tubes.  There are NG tubes which go through the nose (you may remember the orange line in all of Struthers’ NICU photos) and OG tubes are the same little orange ones through the mouth (he had this one during the NICU months he was on CPAP).  Both of these types are for more temporary enteral feedings, and the tubing can just be pulled in and out and is generally changed weekly.  A G-button, however, is a more long-term feeding solution that is actually surgically inserted under his skin, much like a port.  While I fought and put this off (for way too long), it’s turned out to be the very best thing and we are overjoyed at the growth Struthers is experiencing with it!
• GI Followup with Dr. Barrios:  Struthers in GROWING!!!  He’s now 12 pounds, 9 ounces and 24.5 inches long!  At 7.5 months, this still places him well below his growth curve for his actual age.  But he’s now in the bottom 2nd percentile of that growth curve based on his adjusted (due date) age of 4.5 months!  He’s not doing the massive catchup growth jumps they’d like to see, but he’s plodding along on his own little curve still.  So what now?  We will continue to fortify his breastmilk bottle feeds to 24-calories (normal breastmilk is @ 20 calories).  And though he’s been on rice cereal since the week we brought him home, we are now venturing into solids at the encouragement of Dr. Barrios.  We tried mushed avocado last night, and I’m not sure a single bit actually made it down his throat!  I’m questioning whether he’s actually ready, as he didn’t seem to know how to swallow the puree and then choked a bit, scaring me half to death.  But we will keep trying with the help of his therapist this week, as I understand that even with a preemie, it’s important to introduce him over the next few weeks.  But I also don’t want to force the issue and contribute to any oral aversions.
• Urology consult with Dr. Blythe:  It has been debated since shortly after his birth whether the swelling and fluid in Struthers’ groin area was a hydrocele or inguinal hernia.  Long story short:  we’re still not sure.  So there are two types of hydroceles: non-communicating and communicating.  Non-communicating ones will eventually go away on their own as the body absorbs the extra fluid.  Communicating ones are where the fluid travels freely back and forth from inside the abdominal cavity, and they require surgical intervention prior to a closing up of the area (hernia) that could leave tissue without blood flow.  So we will follow up with Dr. Blythe in about three more months, and I’ll watch for whether the swelling fluctuates or is constant, with perhaps slight decreases.
• Pulmonology followup with Dr. Guarin:  He’s doing OK, with steady improvement!  The main factor for preemies being able to outgrow their chronic lung disease is whether they are growing and putting on weight.  So on that front, we are doing OK, but need to continue doing all the extra things outlined by Dr. Barrios to keep that moving along.  Respiratory issues and growth are such a catch-22 because one can’t happen without the other.  So our pulmonologist put it this way as she wrote out a script for another maintenance steroid, “If he’s working hard to breathe, he won’t be able to grow.  If he can’t grow, he’s not growing new lung tissue to help him breathe easier.  So I’m going to do everything I can to help him not work hard with these medicines.  Then hopefully, he can grow and will outgrow the breathing issues.”  OK-that vicious cycle seems simple enough.  So Struthers still visibly retracts when he breathes, which is when the skin pulls in and out between each rib, indicating difficulty breathing.  Our little fighter manages to keep  his oxygen saturation above 90, but his little body is working fairly hard to do so.  What does that mean?  We will keep his oxygen levels where they are now (1/8 liter during wake time and 1/4 liter during sleep).  I kept hoping we would be able to wean down by now, but he’s just not ready, so I’m learning a healthy dose of patience.  And given the process for weaning and followup intervals/timing, I think we’ll be lucky to be off daytime oxygen by his first birthday.  And we could be on nighttime for years, until he outgrows the apnea.  Sigh.  But if it helps him, I’m all for continuing to play jump rope with tubing throughout the house and car.

NICU visit while we were in Denver:  We coordinated one of our Denver appointments with the opportunity to swing into the University NICU at the same time as our former NICU neighbors, the Mentel triplets (and parents) made a visit back.  It was amazing to see these precious girls and their parents and Babcia (Polish for grandma).  The most amazing part was the grace and ease with which Marta handled THREE girls simultaneously AND was so intently trying to catch up on how we were!  Gabi, Skyler and Harper are beautiful and growing, and we look forward to years of staying in touch with them!

Again, THANK YOU for the prayers and love!
Eli, Cami and Struthers

I love sharing life with you through this site, but I haven’t been the best about keeping up with it.  My mind is always in “writer’s mode”, and I’m always thinking about stories to tell you or emotions I finally managed to organize into words.  Then I don’t write them down, and the next emotional milestone makes it appearance without so much as a word written.  So I thought I’d just give myself a little ‘reminder’ and you a little ‘teaser’ of things I still want to shar  e with my prayer warrior friends and Caring Bridge community.

• Our Odds, God’s Odds
• New old friends
• The Joy Wins Out (http://www.preemiebabies101.com/2015/06/tackling-feeding-preemie-spd/)
• It’s Never as it Seems
• FAQ’s
• Facebook world

THANK YOU SO MUCH for keeping us in your prayers!  Struthers is thriving in his own little way at his own little pace.  He is 7-1/2 months old, and weighs about 12 pounds.  He still needs 1/4-liter of oxygen and has a feeding tube for ‘backup’ feeds and venting.  He works with a therapist each week, and we’re working on head control, core strength and motor skills, sensory processing (touch/feel, see, hear), eating (still suck, swallow, breathe) and generally making transitions a bit smoother.  In general, we are all getting out a bit more, now that RSV and flu seasons have passed.  Struthers LOVES being outside, and continually demonstrates his love for music.
On another note, this journey has brought us emotionally closer to several other families.  Please consider following and/or praying for our friends:

• http://www.caringbridge.org/visit/josephinemariesutton.  Annie and her husband were in our Young Married’s Small Group about 5 years ago
• http://www.caringbridge.org/visit/prayforwhit.  Whit’s Mom Mary is a sorority sister of mine whose faith is unbelievably inspiring.  It is never far from my mind that Struthers and Whit were born the same week.
• https://www.facebook.com/OwenAndOswald?fref=ts or http://www.caringbridge.org/visit/owengregoire.  Owen’s great aunt is a coworker and chaplain at the hospital I work in–she has prayed with us for years and through the miscarriages and health crises.  Owen’s mom Melissa has had her own health challenges, and our little guys charted almost the exact same little preemie course for the first 3 months of life.
• http://lindentreeshade.com/.  We haven’t known them very long, but the Udall’s were in our small group for a short time this fall.  And they’re always on my heart, because I’ve been where they are…their testimony is beautiful.
• TWO friends with preemie triplets–I CANNOT IMAGINE!  These unnamed Mama’s are amazing…
• A childhood friend who is in the last trimester of her second pregnancy–her first is a miraculous little 25-weeker.
• My sisters!!!  I don’t even know what to say about them except that I AM SO PROUD OF BOTH OF THESE SUPER-MOMMIES who teach me something everyday!

Struthers is a champ, albeit a champ in a bit of pain. We couldn’t have asked for a better morning considering. At every step, God confirmed that we were doing the right thing. The bronchoscopy showed that he has been aspirating but it looks like he’s been efficient enough at coughing some of it out. But the lungs are inflamed and vocal cords very thickened and they and trachea definitely show damage from reflux. So I guess that part just confirmed second part of the procedure had to be done. The Pulmonologist came out and told me that 10 minutes after taking him back, so it made the next hour and a half a bit easier wait knowing that and that he was safely tolerating anesthesia. The Nissen fundoplication and feeding tube placement went amazingly well. They really aren’t even sure there was a hiatal hernia, perhaps just a small space where food was coming back up. But either way it wasn’t going to get better on its own and is all fixed now!

I hadn’t mentioned it before, quite frankly because I didn’t think about it until the pulmonologist said it again this morning, but they were a bit concerned that once he went on the ventilator for the anesthesia, he might have a harder time coming off because of his central apnea.  But he was amazing and tolerated extubation like a champ, and we haven’t seen any desaturations or apnic events thus far!  PRAISE THE LORD!  I didn’t  know how scared I was of this until this morning.

So steps for going home are suck, swallow, breathe.  Wait, I think I wrote that exact sentence a few months ago?  Yes, we’ve been at this place before, but now it should be a much quicker process.  He will get no food today, since we have to let his stomach heal.  So tomorrow we will begin slow feeds and see how he does.  He should quickly re-learn to swallow, but it will feel different because everything is tighter.  It might also take him a bit to realize that he doesn’t have to hold things in his mouth while protecting his airway, or hold his breath waiting for the reflux, or just want to keep eating for the sake of keeping things going one direction.  Those have all been learned coping behaviors, and I hope they will reverse themselves now that we’ve taken away the root cause!

All in all, I’m feeling very optimistic about where we are and where we are headed.  And while there will still be some underlying issues to take care of, I am looking forward to watching Struthers’ growth take off and getting to know my little man’s personality shine uninterrupted by pain and breathing issues.  What’s a little G-tube if it improves our overall quality of life?  I’m just sorry he had to shout that out to us in distress!

You may have figured out from the title of the post that we find ourselves back in the hospital. Just after the last update, Struthers began showing signs of respiratory distress that weren’t being alleviated by our home regiment of tweaking the oxygen intake and taking the nebulizer every 4 hours. Nor had he responded to the steroid boost started Tuesday. And sometimes, only minutes following the nebulizer treatment, he would begin wheezing again. Then there were a few scary coughing/choking/gagging spells during which he turned all kinds of colors and couldn’t catch his breath in between. So after several phone calls with the pulmonologist and trusted medical friends, we decided to drive him to Rocky Mountain Hospital for Children in Denver. Our pulmonologist said we could either wait until it was a true emergency (and we wouldn’t have time to get him to HIS physicians), or we could go ahead and come in for assessment. That was four days ago, and the only time I’ve even been outside these walls was when I moved my car from the ER lot yesterday.

Quick shoutout to this place–we were escorted directly back to an ER room from the front checkin (keep in mind we weren’t in acute distress and Struthers was sleeping soundly in his carseat). Struthers was quickly awakened, assessed, connected to monitors and was given a chest xray within 5 minutes of arrival. As it turns out, our pulmonologist had greased the wheels and was in contact with the ER physician. And though we still weren’t in acute distress at the moment, the ER physician did decide to admit him, as she could see his periodic desaturations and hear his wheezing already at the 2-hour post nebulizer point.

All of this came on quickly, and I’m learning that’s the way it goes with preemies. We really can’t be too careful, as the mildest of illness is enough to overwhelm Struthers’ still-immature system. Thus the obnoxious sign on our carseat that says “STOP! Don’t Touch–I’m a micro-preemie and your germs are too big for me!”…and I’m amazed that coughing strangers in a waiting room still reach out and touch (or let their kids).

–HAHA SO I STARTED THIS POST 2 DAYS AGO———–AND WE’RE CHANGING DIRECTIONS HERE–

So I started out this post very detailed, but now, after 5 days here, we are finally getting some answers and it probably just makes more sense to fill you in on where we are now.

• Struthers does not have a cold as we originally thought. It turns out his extreme congestion is from the reflux he’s struggled with all along. That explains the sporadic ‘clear ups’.
• Reflux is a funny thing for these preemies with chronic lung disease, because often it is difficult to distinguish what’s really going on. The reflux can also cause bronchospasm, which in turn irritates the lungs and doesn’t allow them to move air efficiently. Not to mention, they will eventually aspirate and accumulate liquid in their lungs leading to pneumonia. Most of the time, reflux is a problem babies outgrow as the sphincter ‘learns’ how to close after months being held open by a feeding tube. Unless there’s a structural problem that will prevent that…like a hiatal hernia. My little guy likes defying all the odds–don’t know where he got THAT from!
• You may recall from the last post that we did see a surgeon last week about a procedure called a Nissen that would repair the hiatal hernia and create a ‘tube’ around the esophagus with the top of the stomach, tightening up the sphincter. But doing that procedure on an infant (it is done often, though) presents its own set of issues, especially in a child that may have some underlying GI issues as well. So when we left the surgeon’s office last week, it was with a GI consult in hand and hopes of being able to put it off or at least minimize issues from it. But let’s just say the answers have become very clear. We have to do something about this. We can’t even sort out what is primary respiratory now because the reflux is so bad, and my sweet little boy’s voice sounds like he’s been smoking for 70 years. He’s also refluxing continuously (it doesn’t start/stop around feeds), and none of us can protect our airway all the time, so he’s aspirating a bit and his little inflamed lungs just can’t handle that.
• So surgery tomorrow (Friday 5/22) will be at 7:30am and will include the Nissen procedure/hiatal hernia repair, a G-tube (feeding tube) placement, a bronchoscopy and umbilical hernia repair. It might not solve all of our problems, but it will allow us to eliminate a complicating factor and take a look at his lungs in one fell swoop. A deciding factor in this is that it’s something that would have to be done relatively soon anyway, as congenital hiatal hernias that are symptomatic in infants are likely to just get bigger and cause more problems as he gets older, and there’s no medical management that will help (no amount of Prevacid or Nexium).
• Struthers will have the G-tube in for 6-9 months, or as long as he needs it. It will mostly be used for venting, but also guarantees that he can get the sustenance he needs to continue thriving. While he looks chunky and healthy, he is still only 11 pounds at 6 months old, and we have no room for him to go backwards in that. Weight gain is also the #1 indicator for getting through the preemie respiratory issues in the first 6-7 years.
• We have been incredibly blessed that our physicians we’ve been seeing outpatient have been visiting and consulting us here. Everyday. Have I mentioned I love them? They are amazing and coordinated, and they love my kid–so much that he smiles when he sees them, making them wonder how this kid could be so happy.
• So speaking of incredibly blessed by medical professionals…We are not at the facility where Struthers was born. In fact, we’re clear across town, which in Denver translates to at least an hour away from the other facility. And yet TWO of his NICU nurses (night primary and day primary) have come across town just to see ‘their’ little guy. What an amazing blessing those two ladies are in our lives, and I look forward to Struthers growing up knowing how special they are!So please pray for a safe procedure and God’s hand to guide the surgeon’s hands, and all who care for him tomorrow. Thank you, once again, for keeping us going with your encouragement.

Well, Mr. Struthers, otherwise known as S-man (heroic connotation not lost) is SIX MONTHS OLD!!!  That is, from his actual birthdate.  But you may have heard the term “adjusted age” in referring to a preemie, which is simply their age from due date.  Struthers’ adjusted age is 13 weeks today, and we’ve had him home with us and actually felt like parents for 11 weeks today (meaning he came home from the hospital 2 weeks after his due date).   These numbers are at the forefront of my mind, as we’ve had FOUR physician appointments in the last 2 days, and they utilize all three “Ages” in making decisions regarding Struthers’ care.

Medical updates with the least severe issues first:

• Preemies are prone to vision issues, and our little guy has two strikes against him from his -9.75, one-eyed mom.  So he’s been seeing an ophthalmologist since he was about 3 weeks old, and this first non-NICU appointment has produced quite a bit of anticipation bordering anxiety.  Eli noticed Struthers’ inability to focus on or make eye contact with objects close (within 15″ or so), but we know he has an incredible distance vision, tracking, following and responding to anything further away from his face.  Daddy was right–Struthers is currently a +1.5, but that is fairly common at this age, and will change as he gets older.  Optometry lesson:  positive and negative powers have to do with the length of your eye.  Extreme negatives (like mine) have elongated eyes, making retinal detachments or tears more likely.  Positives have shorter eyes–to be expected in babies.  Long story short, the ophthalmologist expects this to neutralize as Struthers grows.  We will see him again in a YEAR unless we notice anything else, watching for alignment issues (he will come by that honestly).
• The swallow study and Upper GI study showed that Struthers does indeed have a significant amount of reflux.  And it’s no wonder–he has a hiatal hernia that prevents the sphincter from fully closing, allowing food to come back up.  Quite frankly, it was a relief to know that we weren’t just crazy or that we’d have to be patient and let him outgrow this.  He won’t outgrow this, and in fact, it will only become a bigger problem as he gets bigger and older.  More about what that means in a minute.  The study also showed that while he’s not aspirating when he takes in food, he probably does ‘micro-aspirate’ when he refluxes the food back up.  This simply means that small amounts of milk/food get into his lungs, which explains the next point:
• We were discharged from the NICU on 1/32 of a liter of oxygen.  This is a very small amount, and we were all in hopes that we would be able to quickly wean him off this “tiny puff”.  But in the past few weeks, it has become more and more apparent that not only was that 1/32 not sufficient, but nor was 1/16 or 1/8.  So we are now on 1/4 Liter, and we still have some significant desaturations through the night.  We are hoping to get on top of his chronic lung disease with steroids, inhalers and nebulizer treatments.  Hopefully these things and trying to eliminate/minimize reflux aspiration will get us back on track and allow his lungs to heal.  So please pray for this little cold he has to STAY A HEAD COLD, as miserable as it is.  It could be extremely dangerous if it goes to his chest, so we are being as aggressive possible in treating it.
• So how do we know about the night desaturations?  Yes, we’re back on the oximeter and heart rate monitor at home.  The sleep study mentioned in the last update post was not all that great.  I knew that from being there when it was done, but I didn’t know exactly how bad it was until I saw the full report.  In the 35 minutes they weaned him DOWN to 1/16, Struthers had 20 apnea episodes!  So the test that was supposed to be done OFF oxygen, with it only added in when he needed it, could not even be done fully.  ROOM AIR CHALLENGE FAIL!  This brought up so many emotions that I’ve struggled with since leaving the NICU.  We were certainly ready to have our little man home after 105 days, and he certainly seemed to grow and thrive in the home environment, but there were some underlying issues (namely BREATHING) that I’m not sure we were fully equipped to deal with.  We were sent home with no monitors, which I was told every NICU mom has anxiety over.  Fair enough.  And the room air challenge our first NICU had taught was a benchmark for going home wasn’t done in the facility we discharged from.  When I asked about it, we were told “Well he’s going home on oxygen.  If he could pass a room air challenge, then we wouldn’t be sending him on oxygen.”  OK, I guess that made sense.  But I should have just listened to my mommy-gut, because the guilt associated with realizing your baby’s not breathing when he’s sleeping for FIVE WEEKS at home is not worth it.  Lesson learned–Mama Bear awakened. And even a sleeping mama bear will take being awakened by the monitor alarms in the middle of the night anytime over not knowing.
• Hernia repair–Well, we saw a surgeon this week that agreed it would probably need repair.  But the supposedly ‘simple fix’ will not be so simple, and I’m still  digesting (no pun intended) the fact that she wants to place a G-tube for feeding and venting that would be in place for 6-9 months.  WHAT?!?  Still working through that one, but it seems like that might be the direction we’re headed.  It will be much easier and less impactful to do it when he’s this young than after he would be learning to eat solids.
• The surgeon also sent us to a GI specialist, who is doing a workup for allergies which could be aggravating things.  The upside to this is that if digestive issues are able to be controlled, they MIGHT consider doing the hernia surgery WITHOUT the G-tube.  So we will try a few different plans of attack, each for about two weeks exclusively (elementary science flashback: independent variables), and then make a decision about whether the surgery will include feeding tube placement or not.
• OK, so this isn’t medically severe, but it’s something I’m probably having the hardest time dealing with:  It “hurts” my child to be held.  :(.  This realization is fairly recent, and I found out from another preemie mom and the Occupational Therapist that this is a fairly common preemie problem.  I thought he just didn’t like to to be cuddled…but it’s more and more apparent that he is happiest flat on his back without being touched, except he does like to hold your hand and fingers.  So I finally said something out loud…”Oh, sure, hon.  Think about it…when he was supposed to swimming in amniotic fluid, he was being handled.  All the while his body was trying to grow that thicker skin, but that energy was needed for more critical development.  Neurologically he’s still recovering from that, and he will.  There are lots of other ways to show him love and affection, and clearly he likes being near people and interacting verbally.”  Sigh.  OK, still counting our blessings, but at least I’m not crazy.  So our evening snuggles involve my laying flat next to him on his playmat, looking straight up at his dangling toys or a book (arm’s length away), or sometimes just listening to music.  And we’re both pretty happy like that.
• In all of this, I have to say his physicians and care team are AMAZING!!!  I LOVE his therapist, pulmonologist, surgeon, GI specialist, ophthalmologist and pediatrician! They are all so responsive, working him into busy schedules at the last minute and calling at any hour, sometimes just to check on him.  And we never wait in waiting rooms==they always shuttle us away to the back, even if they don’t have an exam room, they just get us out of the waiting area.  So blessed…

OK, so if you’re recovering from all that news, here’s the fun stuff that keeps us going:

• I’ve mentioned it before, but it’s becoming more and more profound…Struthers LOVES music!  It’s crazy to think he has musical tastes already, but he certainly does.   Instrumental hymns and piano music top the list for him.  Thank goodness for Pandora–Heavenly Lullabies is the BEST station!  There’s this one song by Piano Guys that’s a duet with a cello–he goes nuts kicking his legs, sometimes singing, but also somehow simultaneously settling down.
• He also likes anything with a rhythm or pattern–Dr. Seuss, nursery rhymes, children’s songs, “Gramma Shell’s Struthers song” and especially Brown Bear, Brown Bear…he seems to be able to “Center himself” well with any of those, and anything else “disorganizes” him, according to his therapist.
• He has daily CONVERSATIONS with his Daddy.  It’s hilarious to watch–he thinks he’s talking in full out sentences to him and it makes my heart leap!
• He doesn’t like to be wet…at all.  Diaper wet or bathtub wet.  Also possibly a neurological touch thing?  But we will see how he likes the pool in a few weeks!
• After about a week of trying for it, he managed to get his thumb/fist into his mouth.  Now that’s his self-soothing of choice and he fairly efficiently ‘finds’ it every time now.
• Struthers has been sleeping through the night for about 5 weeks (BABY WISE!!!), except for being sick this week and needing the nebulizer at night.  He is such a happy little critter in the mornings when he gets up!  He seems to find comfort in routine and pattern, and that’s worked well for us.
• We have been teaching him sign language since his first week home, and he’s definitely picked it up, doing a lot of it on his own.  He will tell us when he’s hungry (“Eat” or “Milk”) or tired (“Sleep”), and I have a feeling this little skill set may save us a few temper tantrums later.  Not that we’ll be immune, I’m sure, because he does have one quick temper if he doesn’t get something right the first time!
• 11 pounds, 4 ounces!!!  He’s in the 5th percentile for his adjusted age (13 weeks), and not on the chart yet for his actual age (6 months), but everyone is so pleased with his continued weight gain, and they expect him to meet the bottom of his actual age growth curve by about a year.  WAHOO!!!

Thank you for the continued prayers! We are so very grateful and can feel the love from so many corners of the country!  Thanks for running this marathon with us!

WARNING: If you’re uncomfortable with hearing about breastfeeding, you might want to skip this post.  But I promise, I’m not sharing anything too personal or graphic, just awe and wonder at what God continues to orchestrate.  And if this can be any encouragement to the many moms who feel the most basic of hopes and dreams shattered when they have a micro-preemie…it does get better, and God has a way of giving us little surprises in the most unexpected times and places.

Exactly six months ago, I was introduced to our new son, a new life, a whole slew of new medical professional friends, and surprisingly, an entirely new vocabulary.  One of the first things I learned during our NICU experience was our son’s need for something my body would eventually produce.  I knew that I wanted to try to breastfeed, but I had no idea what I was doing, and I was even further perplexed at how my body would possibly know what to do when Struthers was cut out of me three months early!  Not to mention the fact that it didn’t seem like eating was anything our little purple/translucent 1-pounder attached to a ventilator would be doing anytime soon (and he didn’t for nearly 3 months). Oh, but the things you learn in the NICU would soon have me in recurring wonder at what God had created.

While I was whisked away to Cardiac ICU, and Struthers to Neonatal ICU, my body had already been told I was now providing for a little guy who needed me.  And only hours later when I was somewhat stabilized, a Lactation Consultant came to provide guidance and instruction, and she introduced me to a little yellow machine we have now dubbed “My Sucky Friend”.  I was new to this whole process, and all I knew was that as soon as the tiniest volumes were available, they were whisked up to the NICU.  A day or so into my CICU stay, I talked one of the nurses into wheeling me up to see Struthers and deliver the itty bitty syringe myself.  And when we rolled in (with all the cardiac monitoring machines still attached), our sweet nurse said, “Oh, yay mom!  You brought him some liquid gold!”
I wasn’t really sure what was meant by that, and I’m not sure I really understood it until this morning.  Yes, this 6-months later morning.

You see, shortly after my body began producing the high-calorie, early “colustrum”, Struthers’ little body was overrun with infection that meant we had to “hold” the feeds he was receiving through a tube.  So while continuing to provide Struthers with life-saving ’round the clock care, his nurses went through their fairly routine process of ensuring freshness of the milk and freezing that which had been in the fridge by his bedside close to its maximum time.  And I thought nothing of it at the time.  Then as I was organizing by date our deep freezer full of frozen milk sent home with us, I came across two tiny yellow syringes dated 11/19/14.  Hmm…I wasn’t sure what to do with them, so I put them in the back of freezer.

That is, until this morning.  Poor Struthers is struggling through his first little cold, needing the nebulizer every four hours plus the maintenance inhalers and a prednisone boost.  As I’m sure it does with any mom, it’s breaking my heart, and stirring up a fear I have been pushing back of ending up back in the hospital.  This little guy is such a trooper.  He smiles even with tears in his eyes and when you know he doesn’t feel well.  So I figured it couldn’t hurt for us to give him that 3mL of Liquid Gold this morning, when he didn’t even feel well enough to take his whole feeding.  He’s used to syringes being full of medicines, most of which I gather don’t taste very good.  So he dutifully opened his mouth for the syringe of colustrum, and immediately gave me the biggest grin upon first taste.  I needed that this  morning.  He needed that this morning.  And I’m once again in awe at how God orchestrated the tiniest moment that almost seemed to erase some of the grief over not getting to have that connection other than through our third party “Sucky Friend” in the beginning.  And I thought to myself, “Now how many moms have the opportunity to see their child smile up at them like that when they get Liquid Gold?”  I would bet not many, and I wouldn’t trade that experience for the world.

Thank you, Lord, for allowing me to see You this morning in the most unexpected way.  Indeed, I believe you worked this one for Your good.

Pardon me for dropping a few of the updates–I often post quick updates on Facebook, but forget to followup on this site, or vice versa.  So here are some items that my Caring Bridge family might not be entirely caught up on:

• Struthers is 5-1/2 months old now and weighs just over 10 pounds and is growing incredibly fast!  He is just out of his newborn clothes (they got much more wear from us than from the average ‘newborn’ since he was in them for 5 months)!  He smiles a lot and laughs at his adoring pup Einstein, his Daddy and “Monkeys Jumping on the Bed” from the Baby Einstein Pandora station.  He loves music of any kind, and seems to thoroughly enjoy classical and instrumental hymns. I’m not kidding–they calm him instantly and he can stay awake listening and cooing to them for hours!  He’s a little houdini who can work his way out of ANY swaddle!
• The reflux is steadily improving, but we still have a swallow study pending scheduling issues.  We added rice cereal to his milk shortly after bringing him home, and that has helped tremendously.  He’s increased his feeding volumes, though he’s nowhere near eating what a baby of his age should be able to take in a given feeding.  That being said, he made some major weight jumps and his pediatrician thinks he will catch up with his age/weight by about a year. While his appetite seems to be fairly healthy, feedings are still somewhat of a mechanical challenge.  He has a common “preemie problem” of thrusting his tongue (and all food, pacifiers, etc) as he sucks, rather than drawing it in with suction.  We are working with an Occupational Therapist who specializes in feeding on that, and it’s likely a problem he will outgrow.
• In some ways, Struthers is so much more advanced than his adjusted age of 10 weeks–he’s awake and alert nearly all day, sleeps all night, pushes his head and neck up and tracks everything and everyone.  But he’s definitely NOT meeting the milestones of a 5-month old.  Though I’m fairly convinced that he just might crawl BEFORE rolling over, and I wonder if that’s because of the reflux.
• The angiogram that I had back in January went relatively well, with the allergy protocol working well enough for them to use lots of contrast and capture good images of all my problem areas. The summary: Left carotid is unchanged and the dissections have healed well. Right carotid has a mild narrowing of about 42% and the 2 aneurysms are slightly larger but not to the point where coiling or stenting outweighs the risks of the procedure. Renal arteries looked better than expected as well with only the left renal artery showing mild FMD recurrence of 20-30%, again, not enough to intervene as long as blood pressure remains controlled. So the name of the game now is to control blood pressure (which has been beautiful on a very low dose of the one drug I couldn’t take during pregnancy).
• I had a hysterectomy in March, and that was emotionally and physically traumatic, quite frankly.  I have always bounced right back from procedures and surgeries, but this one…not so much!  They were able to go in laparascopically, but then ended up having to cut through my new C-section scar to remove some deep scarring.  I have never before taken the entire bottle of prescribed pain medications (I usually only take them a day or so then wean myself off), but I was taking them for a good 4 weeks, and fully needing the relief they provided me.  Eli was a real trooper with Struthers, handing him to me when I couldn’t get off the couch and taking him when he fussed for a diaper change.
• I came back to work just last week, at about 5-weeks post hysterectomy.  And though my physician wanted me out for 6-8 weeks, I’m really enjoying being back among my friends during the day, and I would venture to say I really needed that for my emotional health after 6 months away.   I am finishing up an assigned project at work that should end June 30, and then I’m not quite sure what my work life will look like!  But for now it’s great, and I have the most amazing support both at home and work!
• Struthers had a sleep study on Sunday night, and it confirmed what I had suspected at home.  Only 6 minutes into deep sleep, he had an apnea episode, and was ‘desaturating’ to 70% sporadically all night.  This simply means he’s not breathing deeply enough to get the oxygen his body needs while he’s sleeping.  And while we were hoping that the sleep study would indicate we could begin to wean his oxygen, I’m coming to terms with the fact that we will be carrying around an oxygen tank for quite awhile.  And in the scheme of things, I’ll take it!  He will eventually outgrow his BPD (bronchopulmonary dysplasia), as thankfully, the lungs generate new tissue for about the first 7-8 years of life.  But he will just be on his own little sense of time with that, as he has with everything else!  The whole experience was a bit traumatic, resurfacing the anxiety about being ‘unplugged’ from the NICU.
• We made a last-minute decision today to participate as a family in the March of Dimes walk tomorrow morning.  Struthers’ page can be found at https://www.marchforbabies.org/march/personal_page.asp?pp=5809494&ct=4&w=7352710&u=struthers.  We were so tangibly blessed by this organization over the last few months, and we’re grateful to be able to give back while celebrating our little miracle with a nice little stroll on a Saturday morning.  For those of you wondering about our need to keep Struthers from getting sick or catching anything, we will be taking appropriate precautions, and he will basically remain in the stroller fairly covered and with an obnoxious little carseat sign I had made that says, “STOP-No touching!  I’m a preemie and your germs are too big for me.”  I think that’s one place such a sign will be understood and respected…

As always, THANK YOU for your continued prayers~!
Eli, Cami and Struthers

Wow. I wasn’t sure where to start with an update, so I began by reading through previous entries and your sweet comments. Friends, I cannot begin to describe in words what your encouragement has meant to me. I have so much in my head and heart that I want to put into words here. After all, you’ve been such a part of our journey and our ability to keep putting one foot in front of another, so the least I can do is continue to keep you posted. But putting it all into words is an incredibly daunting task, and my prayer is that God uses whatever words I manage to get out on ‘paper’ for His glory.

Looking back on Struthers’ 105-day (15-week) journey through the NICU and my 27-weeks of pregnancy prior to that, I’m still in disbelief over it all. Many of you know that Eli and I are both the very definition of eternal optimists (swimming friends, think “No Complaining Day” at camp), and I’m realizing now that kept us both from comprehending the gravity of what we were going through. And maybe that’s good, but it’s kind of all hit over the last few weeks as I watch Struthers grow way too fast! The easiest way to describe the inner turmoil (and perhaps allow me some good ol’ journaling therapy) is to provide you with a picture of contrast that has consumed our lives for very nearly a year.

There’s the joy of finding out we were expecting, but the knowledge of the very real threat it was to my life.

There’s the excitement of telling people, and the fear that it was once again not meant to be, or that we would be judged for the risk we were taking.

There’s the surrounding of friends and family for a perfect baby shower, but having to keep the festivities to a minimum because blood pressure was too volatile all weekend.

There’s the welcome challenge of taking on a new leadership role at work and beginning to establish repoire, but one day just not coming back from a doctor’s appointment.

There’s the comfort in having the best physicians in the world watching you like a hawk, but just wanting to be back at home and enjoying the pregancy.

There’s dreading what the pregnancy is doing on my insides, but so wishing that little belly to show on the outside!

There’s finally knowing that your body cannot provide what your baby needs on the inside, and the realization that it’s actually him sustaining you instead of the other way around.

There’s going into a delivery room for what’s supposed to be the happiest moment of our lives, and realizing it could very well be the saddest moment.

There’s your baby fighting for his life in his ICU, and you fighting for yours in your ICU, separated but so connected.

There’s wanting to see pictures and videos of the child you have not yet met, but jealousy of whoever is by that bedside when you cannot be.

There’s wanting him to know and feel that family is there for him to wrap his tiny fingers around, but not wanting anyone else to have that experience before you do.

There’s seeing your little one-pounder struggling for every breath and so tiny, but so perfectly formed.

There’s knowing he’s going to survive at a certain point, but not knowing what that means or what his quality of life will be.

There’s knowing you’re a parent, but not feeling like one because you aren’t the one caring for your child in the middle of the night, or any other time for that matter.

There’s a loneliness brought about by feeling like no one in the world understands, but renewed kinship with old friends you had no idea experienced the same things in days past.

There’s joy in new friendships made through hardships, but a broken heart that anyone else ever has to go through this.

There’s absolute trust in nurses who handle him so well, and wondering if you can ever live up to how they care for your child.

There’s wanting so desperately to share and introduce your son to friends and family, but very real fear of compromising his weakened immune system.

There’s anxiously awaiting the conquest of new skills and ticking deficits off the list, but not wanting him to grow up quite so fast.

There’s the 5-minute explanation to the simple “how old is he?” question, but the pride in seeing how far he’s come in that short (but too-long) timeframe.

There’s the yearning for normal new-mom problems and sleeplessness, but the fear of him actually not waking during the night.

There’s wanting desperately for him not to be tethered to the oxygen tank, but fear of him not having that constant pressure to breathe.

There’s the knowledge that he needs a healthy mom, but the deep sadness over knowing I’ll never birth him a sibling.

There’s the awe at knowing he is God’s little miracle, but not knowing how or why I deserve this.

There’s the wondering what plans God has in store for him and us, and fear that I will get in the way.

Lord, please be with us as we navigate all these conflicting feelings, and help us to alway choose the paths that bring you the most glory. Help me also to realize that even in the midst of bad, you work things together for good. Amen.

In just under an hour I will undergo a hysterectomy. Prayers are appreciated as it’s a very emotional day. Struthers is at home spending his first 1:1 time with our nanny Christiana and Eli and I find ourselves in the same all-too familiar hospital we were so excited to depart last Friday. The plan is for this to be an outpatient laparoscopic procedure and home tonight, but that could change. Thanks in advance for lifting us up in prayer!

For weeks I’ve listened to Brahm’s Lullaby play sporadically but frequently over the loudspeaker system at St. Francis Medical Center. And this tune that generally inspires would immediately illicit a pit in my stomach. Why? That sentimental melody signifies that a baby has just been born in the hospital. It signifies something so very normal, yet miraculous. I imagine the grandparents I just passed waiting in the lobby rejoicing, a proud new father in the delivery room cutting the umbilical cord, doctors proclaiming “It’s a Girl!” or “It’s a Boy!”, and someone pressing SEND on a pre-scripted email announcing a joyous arrival. And yet, none of that happened for us. We had a miracle for sure, but it didn’t look or feel like the others around us.

So while I’ve been grieving the loss of ‘normal’ anything, our boy has grown and suddenly allowed us some normal new-parent experiences. He did so well this last week that he was moved to a ‘regular’ room on Thursday night and I was asked to room in and give this full-time caretaker thing a try. And with the move from the regular NICU to the Annex, a security bracelet was generated, triggering the beloved lullaby to be played–this time for my child! I was overwhelmed with emotion, not to mention excitement and anxiety that we were nearing taking our former-1-pounder home at last!

Long story short, I sit tonight listening to Brahm’s playing on Struthers’ mobile, while he watches giraffes and elephants parade above him…in his own crib! And the song that only days ago elicited inner turmoil is now a nostalgic reminder of how very far God has brought us!

We are thankful and blessed to be home now, and are looking forward to navigating some normal new parent woes. As always, thanks for the prayers! I will fill you in on the discharge/homecoming details, including what’s next, stats, how it’s going at home and my plans in a later entry.