Our Difficult Year, Through the Rearview Mirror

    
In three weeks, I'm heading back to Minnesota to celebrate my 20th high school reunion.  I have been planning the event, so it has been on my mind a lot lately (well, behind Joshua and his issues, the Colorado wild fires affecting so many of my friends, and worrying about leaving our family and friends with our upcoming move to who-knows-where-the-Air Force-will-send-us).  The other day I was reflecting on the past.  It has been TWENTY years since high school, and I think I have aged all 20 of those years in the past 12 months.  Up until 2011, I considered myself relatively unchanged from those glory days.  Sure there have been minor stresses with med school and residency, but my life was pretty much happy and carefree, and I always felt younger than my actual age. 

Everyone experiences crises at one point or another, but I have had the unique experience of having the three biggest ones in my life crammed into 12 months.  We had been trying for baby #2 for about a year, and we found out we were expecting last spring.  In June, I was trucking along through the usual first trimester fatigue with excitement for the little baby growing inside me.  Finally, at nine weeks, I had my first OB appointment.  They did a routine ultrasound to confirm the dates, and SURPRISE, IT'S TWINS!  Wow!  How exciting!  I have always wanted twins, and I even remember telling friends in high school that someday I wanted one boy then twin girls.  Could it really be possible?  The ultrasound tech labeled the two gestational sacs as "Twin A" and "Twin B."  While I was very excited, I sensed something wasn't right because the sacs were empty.  "Uh, there are no babies in there," I said.  She didn't sound too concerned.  "It's ok, they don't show up on ultrasound until the 6th or 7th week."  We were sure of our dates, and I did the math, pretty sure 6, or even 7, weeks wasn't possible.  She got the doctor, and he said, "It looks like a normal 6 week twin ultrasound.  Don't worry.  Let's just recheck it in a week." 

I went home with mixed feelings, so excited about the possibility of twins but afraid of the worst case scenario.  I was so anxious about the possibilities, overcome with worry.  That night, I woke up a few times in a panic, and I had horrible insomnia.  I was wracked with fear, a feeling that I was very unfamiliar with.  The next night, I finally tried to turn it over to God.  As I was doing my devotions, I felt Him say two words crystal clear to me:  "TRUST ME!"  It wasn't audible, but it was loud and clear.  It came out of nowhere, and I had no doubt He spoke directly to my heart.  I had no idea if He meant "Trust me; they are fine, and everything will go perfectly with this pregnancy" or "Trust me; my plan for you doesn't involve meeting these babies until you get to Heaven, but I'll take even better care of them than you ever could." Either way, I felt a huge wave of peace spread through me.  I slept soundly, and I was relaxed and confident in His plan for our family, whatever it may be. 


Trust in the Lord with all your heart and lean not on your own understanding; in all your ways submit to him, and he will direct your paths.  Proverbs 3:5-6

Over the next week, I let myself plan and dream about the twins, which I was almost positive were both red headed girls; I even bought a bunch of baby girl clothes at a garage sale.  I know it wasn't wise to get my hopes up, but I just couldn't stop myself from the anticipation.  Unfortunately, the latter "Trust me" scenario won out.  That next ultrasound looked exactly the same as the first, and another repeat a week later also looked the same, no visible babies and no growth of the sacs.  We had three weeks to emotionally process it, and I just prayed things would happen naturally, so we wouldn't have to make a decision to have them medically or surgically removed.  It was almost a relief when things started to pass, but it was the worst night of my life. 

Since then, I have shared this experience with several girlfriends, and I am amazed at how common miscarriages are.  It seems like about 80% of women I talked to had a story of their own of losing a baby, and I had no idea.  I wish I could have been there for them.  It makes me wonder, why is this such a secret pain that women endure?  We wait to announce the pregnancy for this very reason, but then we have to go through the pain alone.  Just when you need to be uplifted the most, it's so secretive, but you want friends to help lift you up.  I had an extremely supportive husband at my side, but I was thirsting for female companionship to guide me through it.  Thankfully our families were very supportive, and we got through it.  One family member told me she had miscarried her first pregnancy (I had no idea), and had she not, she never would have had her daughter, who was conceived a few months later.  While it was such a difficult experience at the time, she can't imagine living without the daughter she loves so much.  That was probably the best perspective I received, and it was a great reminder that God has a master plan that is bigger than we can fathom.  Ironically, the day before my first ultrasound, I read the book Heaven Is For Real, by Todd Burpo. I highly recommend that book to anyone who has experienced a miscarriage. It gave me a new, hope filled perspective that helped me get through the situation.

Two months later, we found out we were pregnant again.  I think we all know how that pregnancy went.  You can read the past posts for the full scoop on Joshua.  It was stressful from day one...lots of bleeding, no weight gain, just not feeling right...then the snowball of complications.  James and I were rehashing the whole experience the other day, and he pointed out something interesting.  While blogging was very therapeutic for me, I never even mentioned one thing that was very worrisome for him.  After all of the issues that came up, one dreadful thing after another, we had a positive test which showed Joshua had a 99.7% chance of having spina bifida (or another neural tube defect).  I was so oversaturated at that point, that I just reported in this blog, "It's probably just a false positive, so I'm not going to worry about that," and I shoved it from my mind.  It was like a protective mechanism, and I couldn't take any more, so I just chose not to think of it.  James, on the other hand, being an orthopedic surgeon, was very keen to the diagnosis, and he was very upset about the possibility of it.  I had no idea how stressed he was.  The first thing he wanted to see after Joshua was born was his back since that's how spina bifida is diagnosed.  Thank goodness it was normal. I wish I had a nickle for every scenario in which Joshua beat the odds. 

The third crisis of the past year happened on New Year's Eve, just a few weeks before I went on bedrest with Joshua.  I was working a shift in the ER, and James called asking what I thought about some redness on Jeremiah's scrotum.  In a 22 month old, it's most likely irritation or inflammation or even an infection.  We decided to keep an eye on it and wait until morning to take him in to the doctor.  The next morning, I got a call from James saying Jeremiah was being wheeled into emergency surgery.  Wow.  That was a shocker!  To make a very long story short, he had testicular torsion (where the testicle twists around itself, ultimately cutting off the blood supply, killing the tissue), virtually unheard of in his age, and they had to remove his testicle.  That was a blow to the gut.  Our poor little, sweet, innocent boy had to undergo a major surgery, and it broke our hearts.  We were kicking ourselves wondering what we could have done to save his testicle.  In retrospect, it happened 72 hours before.  He had a period of about 40 minutes of crying inconsolably (very uncharacteristic of our happy kid), and we couldn't figure out what the problem was.  I examined him, and his ears and everything (as far as I knew) checked out fine.  When he was clingy the next day, I thought it was because he missed his cousins we visited a few days before.  Then he acted completely normal.  Even on the morning of the surgery, he was running around playing like he was fine.  In true Jeremiah fashion, our tough kiddo bounced back so quickly like it never happened.  When he hits puberty, his remaining testicle will work overtime to compensate for the missing one, so there won't be any hormonal issues.  It's just unfortunate that he lost his spare.  Doctor's orders: extreme contact sports such as bull riding and extreme motocross are out of the picture.  As a mother, I say fine with me!  Who knows, maybe someday he'll be a Tour de France winner like another one-testicled person we all know.  It didn't seem to negatively affect Lance Armstrong's performance one bit. 

There you have it, a quick (ok, not at all quick) summary of our difficult year.  Even now, when I write this, I get choked up just thinking of what we went through, so I don't think I'm completely "healed," but it does help me to write.  I'm not saying we had it any worse than anyone else, but for us, these were all pretty major experiences.  Two weeks ago, when we were anticipating a possible evacuation due to the Waldo Canyon Fire, we were concerned about Joshua handling the smoke and our friends who lived so close to the fire, but other than that, it really didn't phase us.  We thought as long as our family was safe, the worst case scenario would be losing our house and belongings.  Who cares? Sure it would be a hassle with insurance and replacing things, and we don't mean to belittle that heartbreaking outcome that nearly 350 families had to face, but after our rough year, our perspective has changed tremendously.  It's all "just stuff." 

We consider July 1, 2012 our New Year's Day, relieved to have the past 12 months behind us.  For now, things are looking better already.  Jeremiah is as happy and healthy as can be.  Joshua has far exceeded our expectations (despite our calendar filled with appointments with the pediatrician, developmental pediatrician, peds cardiologist, physical therapist, speech therapist, occupational therapist, and dietitian, all in a 10 day period).  We have no complaints.  While it has been difficult, we praise the Lord for being faithful to us.  We have no doubt things could have been a lot worse than they were.  When I return home for that reunion, I may not have the same lighthearted attitude I used to have, but I know my character and faith have been strengthened beyond my wildest expectations, and I think that maturity counts for a lot.

And I will put this third into the fire, and refine them as one refines silver, and test them as gold is tested. They will call upon my name, and I will answer them. I will say, ‘They are my people’; and they will say, ‘The Lord is my God.’” Zechariah 3:19

We've Been Home Four Weeks Now

Time for an  update. All is GOOD!  Since we have gotten home from the hospital, Joshua has been thriving. In the NICU, he was consistently falling into the < 3rd percentile for weight, not even on the growth chart. In each of his weekly visits to the pediatrician, he has been climbing up the chart, from 4th, to 7th, to 11th and 10th percentile.  Today he weighs 8 lbs 5.5 oz.  His eating has improved so much. He is now able to take a full bottle (80-85 mL, almost 3 oz) in 20-30 minutes, and it isn't so stressful to feed him like it was when we first brought him home. It's like feeding a normal baby.  Just a few days ago, things finally clicked, and he is now able to nurse without any issues, too.  He just latches right on without putting up a fight.  That makes me happy!

Two days ago, June 18th, Joshua turned 6 weeks old (adjusted age based on his due date).  We had a big day. For starters, Joshua hit Jeremiah's birth weight, 8 lbs 4 oz. Then that evening, James was talking to him, and he suddenly smiled.  He showed us 5 big grins, definitely social smiles.  This is a big deal for us because we don't know if Joshua will have developmental delays. Time will tell, and we just have to see how he does.  So far, he has been right on track.  The social smile was the last of the 6 week milestones we were waiting to conquer.

One other piece of good news:  We met with the cardiologist last week, and the repeat echo showed Joshua's ASD (hole in the heart) has closed.  It's no longer a concern!  His pressures were up, but that may just be because he was screaming and crying during the test. He will follow up again next month for another echocardiogram to make sure it's nothing to worry about.  In the meantime, he continues to be on oxygen, but we're hoping it won't be for long.
We still keep him pretty sheltered. He hasn't left the house except for doctors appointments.  I'm hoping he'll soon get the go-ahead to attend church and maybe even playgroup at the park, but I have a feeling the latter is still a ways off.  I'm getting a little stir crazy not being able to take him anywhere, but if that's my biggest concern after all we've been through, I can't complain. We are just so thankful! 

Jeremiah is loving his role as Big Brother. He is so lovey to Joshua, and he talks to him and reads to him all the time. He is bound and determined to make sure Joshua knows which trucks have wheels and which have treaded tracks, as we hear him explain to Joshua with his books and trucks over and over all day long.  He also walks around saying "Only Mommy and Dad carry Baby Joshua," so we know he would like nothing better than to carry him around the house. Thankfully he has a little discretion, and I haven't yet caught him dragging Joshua around!   

 Ok, I was making Joshua smile while holding the camera off to the side. I never claimed to be a professional photographer anyway. But check out those chubby cheeks!

  Now he starts working it for the camera!

 Joshua's first time cuddling with Grandma Pat!

Jeremiah in Heaven with his new chainsaw and Scoop from Bob the Builder, his latest obsession.

Thanks, Aunt Linda! 

A Little Father's Day Love...

3 Months Old Today!

Here's a monthly photo of Joshua. To follow his growth, the previous pics are on this post: Two Months Old.

Look at my big boy sitting up!  Oops, I forgot to write "3 Months Old" on a card.

Two seconds later, the amount of time it took to write "3 Months," the moment passed, and Joshua's modeling session was over. Not a happy camper.

Life Outside the NICU

Ok, ok, I'll write another post.  Enough already!  Ha ha.  I am pleased to say life is great being home together as a family.  My children's names are already "Jerjoshua" and "Jahjeremiah," just as my name tended to be "Heidigretakarrn" whenever my mom got flustered. I'm hoping my tongue-tiedness will improve as I get used to being home with both boys.

To all you mothers of multiple kids, I have a new found respect for you.  You all have made it look so easy, and I now see that's not the case.  I hate to admit it (tho there is some pride at my ingenuity), but last night I realized if I ditch the pajamas and go to bed in a t-shirt and shorts instead, I won't be in my pajamas all day the next day.  I'm sure I'm not the first new mom to go this route (maybe I should be more amazed it took me a week to figure it out?).

I feel like we're just a normal sleep deprived family with a newborn now, getting up during the night for feeds. I have finally mastered the pumping while bottle feeding trick, so my 1.5 hour wake periods have decreased to an hour every 3 hours.  One good thing about the bottle is James can help out by taking a feed, making things much more bearable for me.

The one thing that reminds me that things are not "normal" is Joshua's eating habits. Sometimes it is such a struggle to get him to eat, and we have been conditioned to freak out and declare "failed ad-lib demand trial, needs a tube" if he doesn't eat his full allotment of 70+ mL q 4 hours.  Therefore, we have been known to spend 2 hours a feed to try to get that volume in him, and it can be a struggle.  We have come to realize he seems to make up for it a couple of hours later with an 80 mL feed, and at 7 lbs 3 oz, he is gaining weight well, so we are starting to relax more. 

Joshua refuses to nurse, which breaks my heart, but I haven't given up yet.  I know, it's not that big of a deal, but part of me feels like I'm being rejected.  Sorry for the drama there.  In the grand scheme of things, if that's the only complaint I have coming out of the NICU, I'll take it!  He's still getting my milk.  I'm pumping around the clock, so my days are spent seemingly tied up to the pump or a bottle all day long.  Thankfully Jeremiah is a gem by seeming content to just sit by Joshua and me, reading or playing with his trucks with me.  The other night we went for a walk to introduce Joshua to the neighbors.  He was all tied up in the Moby wrap, and I had his oxygen hanging from my shoulder, and Jeremiah led the way.  It was fun to get out of the house.

One other "not normal" thing is the 25 ft oxygen tubing stemming from a gigantic O2 tank in the center of our house.  It's annoying having a constant tether, especially with a 2 year old getting caught up in the tubing with his feet or his riding cars, giving me a heart attack for the potential of one child falling and hurting himself and one baby losing his oxygen supply.  Since we live 1500 ft higher than the hospital (7400 ft), his oxygen requirements increased when we got home.  He'll probably be on it for at least another month or two.  We'll see.

Jeremiah is a terrific big brother, still showering Joshua with kisses all day long.  Every time Joshua cries, Jeremiah is quick to act all concerned and say, "It's o-tay, Baby Joshua!"  He also reads books to him and loves to put his cars right in front of Joshua's face to show him how cool they are.  He has had a couple of moments of mild naughtiness directly related to me holding Joshua (such as stealing the pacifier and running away), but nothing I would consider an abnormal reaction to a two year old going through this transition.  He has also been more clingy than usual, but I don't mind that. As a nurse pointed out to me, just think if your husband came home and said, "Honey, I found another wife, and I'm bringing her home to us. I don't love you any less.  I love you both the same..." Naw, that wouldn't go over so well.  So why do we expect a child to feel any differently? 

That's about it, in a nutshell!  I do miss the nurses (especially at 3 AM), but it's fun to be getting into a normal, mundane routine at home.  Now I'm just looking forward to being able to venture out of the house more.  As Joshua gets bigger and stronger, we'll do just that. 

People have asked me if Joshua looks like Jeremiah. I don't see much resemblance except for some facial expressions that I haven't been able to catch on camera. I tried to re-enact a photo with Joshua at the same age (adjusted) as Jeremiah, 3 weeks old. Jeremiah is on the right.

What woman can resist a pic of her man and baby chilling out together?!

Congratulations, NICU Graduate!

Well, here we are...83 days ago, after 44 days of bedrest, we welcomed Joshua into this world. Today we said good bye to the only home he has known outside of my womb. I surprised myself by getting choked up when it was time to say good bye to the nurses and doctors who have become family to us.  We are so thankful for the team of people who have so lovingly cared for, protected and saved Joshua's life, nurturing him as he grew from 2 lbs 5 oz to 6 lbs 8 oz.


I had to reign in my excitement because a baby in our pod has had five surgeries over the past 114 days, and he isn't even close to going home yet.  Having had 13 babies come and go from the room next to ours, I know how bittersweet it is to be excited for a baby to go home but sad it's not us.  My heart goes out to all the families who don't have the same happy ending that we do today.  There is definitely a bond we share, going through this endurance race.  It's a fraternity that none of us wanted to join, but it's so helpful talking to people who are going (or have gone) through similar situations.  It's pretty hard to fully grasp the magnitude of the raw emotions of the ups and downs that occur on a daily basis unless you've gone through it yourself.  I have tried to take you along with me on this wild ride.  Now, it is such a joy to have it in the rear view mirror.

I would say bringing a newborn baby home is like running a marathon. It's exciting to toe the line and feel full of anticipation when the gun goes off.  Then you get a little freaked out because you realize the magnitude of what you just got yourself into.  As you go along, you feel worn out, and at times wonder if you can still continue to put one foot in front of another because of sheer exhaustion. There isn't a lot of glory in running a marathon (how many pro marathoners can the average person name?), but the feeling you get when you cross the finish line is priceless, and the experiences along the way are so exciting.  Doesn't that sound like life with a newborn?

If bringing a baby home is running a marathon, our experience has been an Ironman. The bedrest phase was the swim leg. For some people this is the easy part, and for others it's a fight to keep your head above the water.  T1 (transition) was labor and delivery. In my case, I had a definite PR (personal record time) for T1, piece of cake.  The NICU experience, just as the bike leg in triathlon, is the second and longest leg. It's a hilly course with lots of ups and downs and a huge head wind, so you feel like you're pedaling hard but going nowhere.  T2 is rooming in at the hospital. Then, when you feel like you are totally spent, it's time to bring home a baby and start that marathon (or I could consider it our victory lap).  Like any triathlon, all three disciplines are grueling, and different athletes will consider a different leg the most challenging.  James had the hardest time with the bedrest, the daily anxiety of not knowing if the baby was thriving or even alive.  I think the roller coaster ride of the NICU experience was the worst, with our family split apart for so long.  I don't know where the finish line is in this little analogy, but that's part of the excitement. It's all about the journey, and not the destination...unless our destination is a healthy, happy baby and family, then it's about the finish line.  Or maybe our finish line is sitting at Joshua's high school (or college, or med school?) graduation and looking back at his rough start as a distant, but poignant, memory, amazed at all he has overcome.  It will be interesting to see how this story unfolds. 


For now, we are content to settle in at home and try to find some semblance of normalcy in our life and actually redefine what normal really is.  So, folks, there you have it.  We reach the end of this phase in our journey.  I plan to blog sporadically with stories and pictures, but don't expect any further regular, daily updates.  Thanks for allowing me to vent, process, whine, and relive so many moments through this "blog therapy."  With that, I sign off with a huge thank you. I know we definitely would not have made it through all of this as well as we have without so many loved ones lifting us up in prayer, encouraging and supporting us, bringing us meals, and being shoulders to cry on.  Every email, Facebook message, blog comment, call and text was vital to my sanity.  My eyes have been opened to how good people really are.  Since it's impossible to pay you all back for your kindness, I plan to pay it forward and be more open to reaching out to others in need.  What a great life lesson!  THANK YOU!

 Dr. Laird, Joshua's neonatologist who took the handoff from OB/MFM back on March 1st. We were excited to come full circle since she was on duty for his admission and discharge.

 The biggest day of Joshua's life, and he fell asleep the minute we left the NICU, completely oblivious to all the excitement.

 Aunt Greta and Jeremiah made this "Welcome Home Baby Joshua" sign.  My new fashion accessory is that shoulder bag carrying his oxygen tank.  Pretty stylish, huh!

 Jeremiah was excited to see his little brother home for the first time.  He wasn't as excited later on when he realized he isn't 100% the center of attention anymore.

 He was initially a little leery about getting too close, but he was excited. 

 "So when do we get to wrestle?"

 Jeremiah gave Joshua about 100 "gentle kisses."  So sweet.

Relaxing and bonding with Grandpa Bob.

T-1 Day Til Discharge

Wow, this is it.  We are rooming in right now, and so far we're having fun being on our own. It's strange being in a room that is almost an exact replica to the rooms I stayed in on hospitalized bedrest. Little did I know at the time that I'd come full circle with a sweet baby in the room with me! Oh how long ago that was!  Rooming in is great.  I LOVE not having Joshua hooked up to the monitor.  No annoying cords to keep track of, and even better, no alarms going off for no reason every few minutes. 

Joshua had another great day today.  He wasn't as interested in nursing as he was yesterday, but he took a full bottle with each feed.  He is eating and gaining weight like a champ. He gained another 40 grams today, so he's up to 6 lbs 8 oz now.

I finished stringing Joshua's Beads of Courage today.  It's the coolest deal for kids in the hospital. He gets a new bead for various things such as each day in the hospital, x-rays, blood draws, procedures, transfusions, etc.  I must say, he collection of beads is pretty brag worthy, after all he has been through. The nurses were pretty impressed.  It's a great keepsake to keep track of what happened each day in the NICU.

"Bye bye, NICU!"

Joshua went through five journals to earn all these beads, proudly on display.

Each check mark earns a bead.  Each column is a day.

Today, Joshua passed one of his final exams, the 90 minute car seat trial. That overachiever, he fell asleep and stayed in for an extra hour, to make it 2.5 hrs. We had to fill in space with rolled blankets to make him fit.

The view from our room. Pikes Peak is snow capped on the right. The absolute best view was seeing Jeremiah and James walking in to visit us.

Memorial Hospital For Children, you've been good to us.  Our home away from home.

Sun-Shiny Day!

I can see clearly now, the rain is gone,
I can see all obstacles in my way
Gone are the dark clouds that had me blind
It’s gonna be a bright (bright), bright (bright)
Sun-Shiny day.

I think I can make it now, the pain is gone
All of the bad feelings have disappeared
Here is the rainbow I’ve been prayin?for
It’s gonna be a bright (bright), bright (bright)
Sun-Shiny day.

Look all around, there’s nothin?but blue skies
Look straight ahead, nothin?but blue skies

I can see clearly now, the rain is gone,
I can see all obstacles in my way
Gone are the dark clouds that had me blind
It’s gonna be a bright (bright), bright (bright)
Sun-Shiny day.

Aaaaaaaaaahhhhh....I think today was Joshua's best day yet!  If yesterday was a dreary day along with the dreary weather, today was a sun-shiny day, literally and figuratively!  This song popped in my head this morning when the nurse gave me report from overnight, and it has been in my head all day.  Joshua was feeling so happy, content and sun-shiny all day (so was Mama!).

Joshua turned a corner last night.  We had a nurse who had never had him before.  This frustrated me, that after 80 days of several different nurses, why can't we have one who at least has had him before.  BUT, this turned out to be a blessing.  This nurse brought in a new perspective and decided to change the nipple on his bottle from the preemie size to a faster flowing, big boy (newborn) size.  Oh boy, what a difference!  He had four full bottle feeds on her shift, each one above and beyond the minimum, and she removed his NG tube.  This awesome feeding continued all day.  I was there for four feeds, and three of them were completely nursing, no additional needed, and the last one was 80 mL from the bottle (waaaaaay more than he's ever had before).  He loves his new bottle, where the milk flows out easily rather than working so hard on a slow-flow nipple that collapses when he sucks and makes him all worn out.   

It's ironic how we have been staying so many extra days in the NICU (at $2600+ per day) with expensive diagnostic studies to figure out why he's not eating and meds for reflux and intestinal motility.  After all these expensive theories of why he's not eating, the solution is a $0.30 nipple.  Or maybe he heard the doctor say he'd need a G-tube to go home, and he kicked it into high gear.  Or maybe the other doctor was right when he said plan on waiting until 42 weeks (gestational age) for boys to be ready to go home.  Tomorrow is 42 weeks, and it just clicked.  All I know is I'm excited again, and that spring in my step is back.  I'm trying to be CAUTIOUSLY OPTIMISTIC since we've been down this road a couple of times before only to reach a dead end. 

The latest plan is for me to room in tomorrow (Monday) night, and if he continues to do well, go home Tuesday.  I'm feeling much more confident bringing him home now. He is so ready.  We all are so ready.  After failing our first two ad lib-demand trials, let's hope the third time's a charm! 

Last night, he had a huge 50 g weight gain to 2850 g (6 lbs 4.5 oz), and tonight he tipped the scales at 2910, a 60 g or 2 oz weight gain, 6 lbs 6.6 oz.  His length is 18.9 inches. 

THAT'S WHAT I'M TALKIN' ABOUT!



Dreary Day

Well, not much to report today except it was a bit of a rough one for Joshua.  Not really bad, just an off day. All day, he was either sleeping or crying, just unsettled.  The feedings didn't go super well.  He ate about half of his feeds with the bottle overnight, and the rest had to be gavaged through the NG tube. He hasn't wanted to nurse with me, but he has taken most of the bottles for me.  He has another feed coming up soon, so hopefully that will go well. 

The weather today is really dreary, gray and rainy.  The nurse said the babies often react to the change in the barometric pressure, so maybe that's why he was fussy.  I'm not sure about the science behind that, but it sounds like a good excuse to me.  After yesterday going so well, today was a bit of a downer.  But that's the NICU life.  I'll take a "bit of a downer" over a NEC or pneumonia scare any day, so I shouldn't complain. 

Sounds like the plan is for me to room in for 24 hours from Monday to Tuesday.  They just want to see if he does better with breastfeeding, and they want to see if he can gain weight with more breast feeds.  I keep thinking we're nearing the end of the NICU, and rooming in is usually the last step.  We'll see how that goes.  I am getting a little stir crazy in this little room, and 24 hours here isn't too exciting to me, but if it means going home soon, I'm all in.

Last night he gained 15 grams, up to 2800 grams, still 6 lbs 3 oz. 

Dinner Time

Today has been a great day for Joshua.  He has been so comfortable and happy all day.  I think it has been a huge relief to get rid of all that "excess baggage" after the enema yesterday.  I nursed him for two whole feeds, and he didn't need anything extra in his NG tube. When he wakes up (should be in a few minutes), We're going to go for three good ones in a row.  In between feeds, he has been sleeping, so he must be getting enough. 

Last night he weighed 2785 g or 6 lbs 3 oz, gaining 15 g (.5 oz) from the night before.  He has been up and down, hovering around 6 lbs 3 oz for the past 6 days. We'll weigh him in a few minutes, but I think I'll just go ahead and publish this now since he's starting to stir. I'll put tonight's weight in tomorrow's blog. 

It's a short one tonight.  Time for Joshua to eat! 
Good night.

Stool, BM, #2, Poop, etc.

Wow.  Thank you all for being so encouraging.  We really appreciate all of the support and uplifting messages sent our way.  It is so cool how, just when you feel like you're at the end of your rope, you realize friends are there holding the rope for you and helping to throw out extra slack to make that rope longer.  The encouraging scripture has been the most helpful.  Thank you so much!

Joshua had another eventful day (no, that's not a good thing).  He lost another 20 grams last night, and he wasn't eating as much volume as they like to see. Then during the night last night he ate only 10 mL over six hours  (which isn't much compared to the recommended 63 mL every 3-4 hours).  We were pretty frustrated with this because that's what happened the last time he failed his ad-lib trial, but the nurse on duty hadn't had him before, so she didn't know that piece of his history.  James' papa grizzly came out (or surgeon's personality with little tolerance for mistakes, whatever way you want to look at it) because the nurse should have woken Joshua up to eat after four hours, but she just let him sleep.  He was polite, but he made it pretty clear we weren't happy with the care Joshua had overnight.  Joshua had to have the NG tube replaced, and he is now back on scheduled feeds. Chalk that up to a failed ad-lib demand trial.  The doctor is trying to plant a seed in our minds that Joshua may need a G-tube, but we are still pretty set against that.  We are praying it will all come together soon, so we can avoid that surgery and potential complications and overall hassle associated with it. 

About the poop issue...I know I should say stool or BM or #2 or whatever else people would consider more cultured.  But c'mon, it's baby poop.  What do you see in a diaper, baby stool?  No. Baby BM? Naw.  It's all baby poop in my mind.  Feel free to censor it in your mind as you read if you disagree. 

Annnnywho...he had a couple of squirts, but not enough, so today he got another field trip down the exciting halls of the hospital to radiology for a barium enema.  Let me tell you, he is one brave kiddo.  Tough just like his brother, he didn't cry or fuss at all.  I was so proud.  The good news is it cleaned him out and, hopefully, got all the contrast from his swallow study out of him.  He seemed much more comfortable afterwards.  The even better news is it was completely normal, so there isn't an obstruction or stricture related to his history of NEC. Whew!  Even better than that, the x-ray he had first thing in the morning was worrisome to the radiologist (and us) because it looked like he had a perforation, but they got a better look at it, and there was no perf (thus avoiding surgery). 

The doctor says Joshua has decreased gut motility, where things just move through more slowly than they should. If he doesn't pass more overnight and tomorrow, they'll start him on a new medicine to speed things up, but they want him in the hospital for a week on it before sending him home.  I'm just giving up on imagining life with our family together at home.  It makes it much less disappointing to not have any expectations.

To end on a positive note...Joshua is doing very well off the diuretic and sodium.  His work of breathing looks great, and he's comfortable.  That's what's most important. 

Good night!