A Belated Thanksgiving Joshua Update

Thanksgiving came and went without a post from me, someone who has so much to be thankful for! Every now and then, I look at Joshua and shake my head in amazement at the way things have turned out. Could it really be, after all he has been through, that Joshua is turning out to be a normal, healthy baby?! God is so GOOD!  Looking back to January 18, 2012, we never would have dreamed of how good he looks now. WOW!

Joshua had his 9 month check up last week. It was all good news. He is right on track with where a 6.5 month old (adjusted age) should be, developmentally. He is rolling both ways, sitting up on his own, interacting appropriately... no concerns. In preemies, the developmental milestones usually catch up to actual age by 2 years old.  Eating solid foods has been a tedious process, but he's showing improvement each day, and it's not concerning at all to his new pediatrician (who we love).  He is drinking 8 oz bottles every 3 hours and acting like he wants to eat more, so we are hoping he really picks up solids quickly. He likes the taste, but his little tongue can't figure out how to push the food back instead of right back out. It's something his new therapist will work with him on. Given his low birth weight, he still qualifies for the state run program to have weekly home PT/OT in Mississippi, just as he did in Colorado. 

Get a load of this: he weighed in at 15 lbs 11 oz!  That's almost on the scale for 9 month olds. He is gaining ground every month, and he is on track to reach that scale by his 12 month appointment.  For length, he is already on the 9 month scale in the 9th percentile, and his head circumference is in the 9 month 40th percentile range. At his appointment, he had his first injection in the series of Synergis, the vaccination to prevent RSV, that nasty virus that can wreak havoc on babies in the winter.  We have been expecting a hospital admission if/when it hits.  The doctor told us he is no longer a tiny, weak baby, and if he catches a cold, he will most likely act like any other baby his age, so we don't have to worry. Now it looks like we'll find out firsthand because Jeremiah is getting over a case of croup, and now I have a cold. Two nights ago, Joshua had such bad nasal congestion that he woke up every 30 minutes fussing from difficulty breathing. Finally I spent the rest of the night with him on the recliner, and he slept a little better upright.

Speaking of the glamorous life of motherhood, I had one of those moments this morning that I imagine every mom has where we step outside ourselves remembering our carefree days of youth and wonder "how did my life turn into this?" Jeremiah, who as I mentioned has been sick, hadn't been sleeping well, so when he fell asleep in the stroller yesterday at 3:00 PM, we decided to just keep him in there to let him sleep. He was out for the night, and at about 10:00, I transferred the sleeping cutiepie to his bed (which is actually a blanket on the floor since he has refused his new twin bed since moving to our new house), and he didn't even stir. Well, no surprise at all, at 3:00 AM, he woke up raring to go, wanting to play with me. As I was trying to wrap my foggy, sick brain around this, Joshua woke up crying. We were all stuffy nosed and coughing, so we had a nice little party in the bathroom with the shower running. Thankfully Joshua eventually went back to sleep, but Jeremiah isn't showing any signs of slowing down. I have declared that is reason enough to pop in a little Veggietales while I (hopefully) snooze on the couch (once I finish this post). Sometimes you have to improvise and do what it takes to get through the day, even if it means temporarily using the tv as a babysitter.  I'll post pictures in another post. 

PS. I just finalized the above post, looking forward to that snooze, when Jeremiah jumped on me begging to read books, and I hear Joshua awake in his room. Looks like my day is up and running, fully rested or not!  Have a great day!

We're Moving!

Joshua turned 7 months old this week! He weighs 13 lbs 6 oz now, and he is doing so well. He is a whole different baby since we changed his formula to Nutramigen prior to my last post, so happy and content, and he's sleeping much better, too. Personally, I don't get it. Nutramigen smells like dog food (disgusting!); he gobbles it down like it's candy, but he never did let us feed him my nice yummy breastmilk that I so painstakingly pumped and froze for him. After that rough patch in August, as long as he's eating something and growing like he is, I'm happy. I'm pleased to report my pumped milk is not going to waste because my friend Kimberly's babies (precious twins recently adopted from Ethiopia) love it!

Joshua had a couple of great doctor's appointments this week.  He saw the ophthalmologist for his 6 month follow up, and he passed his 3rd, and final, test to rule out ROP (retinopathy of prematurity).  No issues at all with his vision!  He also saw the cardiologist, and his echo looks great, too.  He just has a "normal variant" that they want to follow until he's one year old, but nothing concerning.  They can't figure out why he still needs oxygen since his heart issue (atrial septal defect) has pretty much resolved (just a tiny, inconsequential opening left), but they aren't concerned.  The cardiologist said we just need to move to a place lower in altitude, and we'll have nothing to worry about.  Speaking of that...

In a couple of weeks, we will be moving to the Gulf Coast of Mississippi.  James got orders to Keesler Air Force Base in Biloxi, MS.  We were disappointed at first because we really got attached to our home, church, friends, family, and neighbors here in Colorado, and we didn't have a say in what our new assignment would be. Quite honestly, we wouldn't have even put it on our preference worksheet if we had an option.  For about a day and a half, we experienced the five stages of grief (denial, anger, bargaining, depression, acceptance) straight out of a textbook.  The first thing James said was, "We are NOT going to let Jeremiah play with any natives down there because I don't want him talking like a hillbilly!" We immediately realized how impossible that would be, so we cracked up at the thought, which was a major tension breaker.  Then, as I was in the "depression" phase the day after we got the news, James enlightened me with a new perspective during Jeremiah's bedtime story.  Jeremiah has been completely obsessed with the Biblical account of Jonah, and he wants me to tell him the story, which he calls "Jonah Cucumber" thanks to the VeggieTales, about 30 times every night before bed. The night after we heard the news of our assignment, I was in the middle of the part where God tells Jonah to "Go to Ninevah," and James walked in.  He said, "I think Keesler is our Ninevah.  God must want us there for some reason." The light bulb turned on, and I suddenly agreed, and acceptance hit. 

Since then, we have gotten excited about the move...well as excited as you could get leaving a place a wonderful as Monument, CO.  As written above, I now sell it as "The Gulf Coast" rather than "The Armpit Of The Country" (ha ha), so you can tell I've warmed up to the idea.  The people down there are really nice.  Beach life should be fun (although I suspect Jeremiah is expecting to see Jonah freshly regurgitated from the whale since that's his only frame of reference to the beach).  Home prices are super cheap, and this will be a great job for James.  He's excited to get back into orthopedics after spending the last 2+ years training and racing triathlons and marathons. Plus, the entire base closes down every other Friday. What's not to love about a 3 day weekend every other week?  Bottom line, I'm determined to be a good military wife and bloom where I'm planted.  After all we've gone through this past year, we try not to let the little things get to us.  As long as we're together as a family, who cares where we are!

A few people have asked me about Joshua's development.  Here's the scoop.  We just have to wait and see what kind of developmental delays he'll have, if any.  So far he's checking all the major ones off the list right on time.  On September 13th, when Joshua's adjusted age was 4 months and 1 week, we were pretty excited when he rolled front to back, right on schedule (in case you didn't see the video posted on Facebook, I included it at the end of this post).  He can ALMOST roll back to front now, too. A physical therapist comes out to our house for an hour of therapy with him once a week, and she seems to think he's coming along well.  The latest focus is on his hip flexors which are tight from laying sprawled out on a NICU bed for nearly 3 months when he should have been tightly packed in with his feet up by his head. 

Scroll down for the latest pictures. The first is a video. The boys love getting tickled to the "Itsy Bitsy Spider." By the time I got the camera out, it was the third time with Joshua, so he wasn't giggling as hard as he did at first. I got a kick out of Jeremiah at the end.



 Joshua looks up to his big brother, and Jeremiah just adores his little brother.

 

 First time sitting in the high chair like a big boy!

 

Here are some pictures taken since my last post. If you are my friend on Facebook, you probably saw some of them already, but I want to include them here as well for my own blog/keepsake. I got the best birthday present: our first family hike!  We walked up nearby Mt. Herman, last mentioned in a previous post Motherhood Mayhem.  It was such a fun day! 

 

All those days sitting in the NICU so many months ago, I dreamed of taking Joshua out and showing him God's wonderful creation firsthand.  He liked it so much, he fell asleep.  :)

 Enjoying a little picnic on the top of Mt Herman (overlooking Monument).

 

 I love these guys!  The bigger Jeremiah gets, the more fun it gets to hike with James (slows him down a tad, closer to my pace).

 

 

Joshua's rolling now!

6 Months Old!

Joshua is 6 months old! Actually, he has been for a few days now. On Sept 7^th, he’ll turn “4 months adjusted," based on his due date. That’s the age we go by when following milestones and answering questions from strangers.

 

 

 On his 6th month birthday, Joshua got his first ride in his "car."  He loved it!

 

August started out great visiting family in Minnesota. We visited at the end of July, and Joshua really thrived at that lower altitude; he didn’t need to wear his oxygen. Jeremiah had a blast with his cousins.



Living it up with two of his favs, "Yaynee" and "RyRy."

 

"Look, Ma, no oxygen!"  It's good to be at Grandma and Grandpa's house (near sea level)!

 

A rare pic of our family together.

 

 

Jeremiah had fun singing his ABC's last month with Grandma Gus and Aunt Greta.

 

Jeremiah showing off his rendition of Pat-a-Cake to his cousins in Minnesota.

Then we returned to Colorado, and things got pretty bad.  I weaned off pumping, so Joshua no longer got the freshly expressed milk.  No big deal since we have a deep freezer stocked full of frozen pumped milk (about a 3 month supply).  Well, it turns out he hates the taste of frozen/thawed milk.  He absolutely refused to drink it any which way we thawed/prepared it. Ok, that’s unfortunate after all those late night pumping sessions, but at least we have formula, right?  Well, the same formula that we had been using to augment my fresh milk suddenly caused a reaction of projectile vomiting right after feeding when it was given full strength.  

Bottom line, Joshua's reflux got a lot worse, and he also developed a reaction to the formula, likely an allergy to milk.  This is all clear to us in retrospect, but it took a lot of trial and error with reflux meds and dosages, formula:breast milk ratios, rice cereal, etc to figure out.  During those two weeks, he would not eat more than an ounce or two over several hours, and he seemed to cry nonstop all day, wouldn’t let us put him down, wouldn’t sleep unless we held him, and he just seemed to be in pain.  He had been gaining about 1-1.5 oz a day, but during those 2 weeks, he LOST a total of 5.5 oz rather than gaining 14-21 oz.   It was pretty stressful on all of us.  Finally, as we were contemplating whether or not to bring him to the hospital for dehydration, we made a last ditch effort and ran to Wal Mart to buy a can of Nutramigen formula (the protein is partially broken down, for cow’s milk allergy).  That was the magic bullet.  He just guzzled it down, and he didn’t throw up.  Since he has been on that, he has been great, happy, content, sleeping on his own, and back to gaining 1-2 oz a day.  He topped 12 lbs today (12 lbs, 0.5 oz to be exact)!  He’s like a “normal” happy baby now.  Whew!  We’re praying this continues because formula reactions can take about 2 weeks to present with babies. 

I’M WONDERING IF AT LEAST ONE MOM OUT THERE CAN RELATE TO THIS STORY:

One day, after being awake every 1-2 hours with Joshua during the night, I reached my breaking point. James was out of town serving as the medical director for a big international rugby tournament, something I was trained to do in my sports medicine fellowship, and I was “stuck” in the trenches at home, totally sleep deprived.  Joshua was refusing to eat, crying nonstop, and when I looked away for a second, Jeremiah, my sweet thoughtful boy, came up to him and just wound up and hit him on the head.  Now, if I stepped out of the situation and looked in, I’d say can you blame him?  If I had an annoying toy that wouldn’t stop making noise, I’d hit it to see what happens, too.  This “annoying toy” was causing Mommy to not give Jeremiah the attention he needed.  But I wasn’t objectively looking in from an outsider’s view. I was at my wits end already, stressed out that Joshua was losing weight and not eating, and I could barely think straight because I was so tired, and I was feeling sorry for myself for being a prisoner in my own home because we still don’t take Joshua out much. I dragged Jeremiah to time out and plopped him down.  Now with TWO screaming kids, I lost it. I put my face in my hands, signed deeply, and just silently prayed, “LORD, I CAN’T TAKE THIS ANYMORE!  Puh-leeeeze help me before I go completely insane!”  Amazingly, Jeremiah suddenly stopped crying and sweetly said, “Hey Mommy, isn’t it fun having Joshua home from hospo?”  My head jerked up in shock, and I looked at him to see if he was serious. He was smiling. I said, “Do you really think it’s fun to have Joshua home?” and he nodded his head and said, “Yes!”  Even more amazing, at least temporarily, Joshua stopped crying, too.  My bad mood veil lifted as I remembered promising myself several months ago that I would never complain if things got difficult at home because the worst day at home is still better than the best day in the NICU.   I knew we’d make it through the day, and we did.  Yes, the Lord can speak through children when He needs His message to get across clearly.  Sanity preserved…for one more day at least. 



 

The Latest Photos/Update

Jeremiah and Joshua are doing very well. Joshua surpassed 10 lbs today, 10 lbs 2 oz.  He's huge!  His follow up echocardiogram looked great.  The cardiologist just wants to follow along with screening echoes every 2 months until his heart is mature enough for them to see all of the vessels on ultrasound.  He'll likely need oxygen for another couple of months.  He is developing right on track for his adjusted age, so we don't have any concerns so far.  After months of working at it, Joshua made it pretty clear he likes the bottle better than nursing, so I continue to pump while giving him a bottle.  It works for us, and it's much faster than breastfeeding was. 

We finally took Joshua out to go to church two weeks ago.  It was so nice to go as a family.  Just a word of warning to any of my friends who may come across us.  Don't even try to touch Joshua if James is around.  He isn't afraid to bring out his Papa Grizzly when it comes to Joshua.  Don't take it personally if he snaps at you if you get too close.   Our first day out, I was so excited to finally show off my beautiful baby to all the world.  Two of my special friends at church rushed over and started gushing about how cute he is (oh how I loved that!), and naturally, one of them reached for him to touch his hair.  Right about then, James, who was about 10 steps behind me, blurted out, "DON'T TOUCH HIM!"   Oh boy, was I embarrassed! How do you recover from that one?  Of course I agree that we shouldn't expose Joshua to extra germs, but that was pretty harsh.  Bottom line, he's the vigilant one, and I'm the softy.  I wouldn't let strangers touch him, but I don't think friends would hurt him.  I just need to have hand sanitizer right there to offer people first.  I tried to talk to him about coming across a little nicer, but then last week he wouldn't let another friend at church touch him.  Gotta love that protective instinct!  Just thought it would be worth a warning to any of you if you see us.

Here are some pics of my favorite men.

Jeremiah loves holding Joshua.  Here they are sitting at our "pumping/feeding station." Our bedroom has become Jeremiah's play area as he waits for us to finish.  This was taken a few weeks ago.

The bros, just hangin' out.

Sunday, July 15th. My happy guy.

Happy 4 month birthday, Joshua (July 1st)!

I had to include this one since it sums up their feelings so well.  Jeremiah has so much fun "cuddling" with Joshua, who doesn't really appreciate it so much.

I'm a big boy in my Bumbo seat!

Mr. Joe Cool hamming it up.

Tummy Time!

 Yesterday, I got to get out of the house to go play with Jeremiah at the Summer Reading Program celebration.  It was such a fun day at the library. There were so many fun activities, games, treats, and prizes.  Jeremiah loved the bubbles (above).  I got a kick out of him when he pointed toward the fire trucks, so excited.  Of course, he could read books about fire trucks all day.  He started yelling, "To-an! To-an!"  Huh?????  No clue there. I said "show me," and he went running over to the CONE and picked it up.  Of all the fun activities available, he was more excited about the cone than anything else.  And that's as close as he would go to the fire trucks.

Real men wear pink.

Dad and Jeremiah enjoying a rainbow from our deck.

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.