Warrior Games Opening Ceremonies and More

Today was a big day in Colorado Springs.  Michelle Obama was here for the opening ceremonies of the Warrior Games, of which James is the head coach for the Air Force.  I was at the event last year, and I thought it was pretty cool, but I had to make a decision this year.  I could either attend the opening ceremonies at the Olympic Training Center or stay next door in the NICU with Joshua so I could feed him.  Well, I was a little torn, but the self sacrificing mom side of me won out.  Feedings are just too important right now as we are getting closer to going home.  He ended up having a full feed without the NG tube, so I was glad I made the decision to miss the opening ceremonies. 

Today Joshua reached 39 weeks gestation, one week away from his due date. Looking back, we have come so far.  This whole feeding thing is difficult, though.  Just as everyone warned us, you think you're about to go home for weeks, and it just drags on and on.  He has a couple of great feeds, and then he gets all tuckered out and sleeps through the next couple of feeds. 

He is slower to catch on to eating than other preemies at 39 weeks.  The reason seems to be due to his heart and lungs.  He had another echocardiogram today, and the holes in his heart haven't closed yet.  It's not worrisome at this point since a lot of newborns take some time to close up the openings that were normal in fetal circulation.  It just needs to be followed along with echos down the road.  The significance of it is the blood back flows into the lungs, and his little lungs can't handle the extra load, so he breathes really quickly and gets tired easily.  That's why he's on a diuretic, to help lighten that load in the lungs.  They doubled his dose last week, and it seems to be helping a little. 

And finally, who can resist a good poop story?  I laughed so hard today.  I changed Joshua's diaper, and I was pretty proud of myself for my catlike reflexes, quickly containing his urine fountain with his diaper.  No biggie.  He finished, and I completed the diaper change. I then stepped aside, so his nurse could measure his abdomen. He opened Joshua's diaper to line up the tape measure.  As the diaper was wide open, Joshua sprayed a urine fountain and splattered a big, explosive poop all over the place, right on the nurse.  My son is so sweet to wait for me to step away.  Personally, I think he was a little passive aggressive, and he was getting the nurse back for messing with his NG tube and dressing this morning (he didn't like that too much).  Needless to say, Joshua bought himself another bath, and he loved it.

Tonight he weighed in at 5 lbs 4.7 oz, closing in on his cousin Bennett's birth weight of 5 lbs 5 oz (and Bennett is humongous now, almost 5 months later).  Overnight, Joshua gained 40 grams, over an ounce. 

Grandpa Bob and Karen stopped by to see Joshua before the Warrior Game opening ceremonies.  Joshua loves hanging out in his (actually the NICU's) Mamaroo, kind of like a swing.

Brotherly Bonding...Take Two

We got a re-do on the brotherly love episode today, and it was a success.  It was so fun for me to have my parents bring Jeremiah in for another visit.  I have to admit it gets a little old after awhile, just hanging out in the NICU all day long.  This visit broke up the monotony perfectly.  We ate lunch together and took some pictures while Jeremiah fielded some phone calls for Joshua.  Then we went outside with Grandpa Gus.  I think I enjoyed the hospital playground as much as Jeremiah because it was an excuse to go play outside on a sunny day.  It was also fun for my mom to have some special time holding Joshua. That little charmer put on a good show for her with his alertness and smiles. 

The feeding sessions are improving.  He had three full breastfeeds with me today and a nearly full bottle feed  (38 out of 46 mL) with James tonight.  He gained another 30 grams (1 oz), up to 2360 grams or 5 lbs 3.3 oz.

Our future Olympian perfecting his bar routine.

Who will win the race down the slide?

"Hello, Doc Bales..."

Joshua already has Grandpa Gus wrapped around his little finger.

"Hi, Big Gus, I'm Little Gus!"


"Hey, Jeremiah...I caught a fish THIS big!"

Mommy and me

Picnics and Ooshy Diapers

Hmmmmmm....What to write tonight...How else can I say "status quo?"  If this is the biggest concern of my day, it's a pretty good day! 

Joshua breastfed for 21 minutes at 6:00 this morning (15 minutes is considered a full feed).  At 9, he wasn't interested, so he got the full feed via NG.  At 12, he did great for 13 minutes, and he got an additional 15 mL of milk through his NG.  He is definitely the one to set the pace, and I don't think he realizes how nice it will be to go home.  Today the doctor made it sound like we still have a long time in the NICU.  He said, "down the road, maybe a week or so before he goes home, we'll start him on an ad lib feeding schedule..."  Uh, a week before going home is "down that road?"  So much for that 1-3 week prediction!  Patience, patience, patience...

Tonight he had a good gain of 30 grams (1oz).  He is now up to 2330 grams or 5 lbs 2.2 oz.  He's bulking up! 

Today we went to James' team picnic for the Warrior Games.  Jeremiah was talking about going to the picnic all day; he was so excited.  {For some reason he gets the biggest kick out of eating anywhere other than home.  After going to the zoo, he talked most about "eat lunch at zoo."  Same with the hospital-eating lunch in the Ronald McDonald room was way more exciting that seeing Joshua.}.  It ended up being pretty cold, so the "picnic" was in the cafeteria at the AF Academy.  While we were in there, he went "oosh" (#2) in his diaper.  It was a minor ordeal for me to get the diaper bag from the car, and he insisted on me changing him right in the middle of the cafeteria around all the food and people.  He laid down on the floor and lifted his legs, ready for a change as several sets of eyes turned our way.  I more strongly insisted absolutely not, so he gave in with just a bit of a fuss (he didn't want to walk with oosh in his diaper; can you blame him?), and we cleaned him up in the bathroom.  Anyway, much later, as we were leaving, walking out of the cafeteria, he stopped, turned around and waved to the building, nonchalantly saying, "Bye bye picnic!  Bye bye oosh!"  I guess we know what was most memorable for him!  

My Favorite Two Year Old

After yesterday's blog, I realized the only stories I have been telling about Jeremiah have involved him melting down (see Motherhood Mayhem ).  For those of you who don't know him, I'm afraid that's misrepresentation.  He really is such a sweet little guy, and I could probably count on one hand the number of tantrums he's had (which tend to end up in the blog).  He voluntarily puts himself in time out when he knows he does something bad like throwing his food on the floor (and then he picks it up).  He gets so excited about everything he does.  He's compassionate, always quick to kiss any boo boo that needs kissing.  He asks to go in his crib when it's bedtime without a fuss.  He has a great sense of humor with a hilarious belly laugh. 

Perhaps best of all, he fell for my ploy that "It's time to go ni-night as soon as the plane takes off the ground," making 55 out of 57 flights in his first two years of life very easy for us by sleeping through most of them.  The two more difficult flights were because he was sick with an ear infection once and throwing up the other.  When he sees an airplane in a book, he says, "People go ni-night!" 

He also loves to help with household chores like laundry (transferring wet clothes into the dryer, separating lights and darks, and pushing buttons), vacuuming, watering the lawn (especially when he can spray Dad with the hose), cleaning bathrooms (very thorough and focused with the scrubbing), etc. I could go on and on. It's nearly impossible to be down on life when Jeremiah is such a ray of sunshine.  I just love him to pieces.

Here's Jeremiah "helping" to change the sheets on the bed today.

In Joshua news...there's not much to say tonight (YAY!).  He seems to be an early person (like his dad) since his best feeds are at 5-6 AM.  Today I was there before 6 (FYI, I am NOT an early person), and he breastfed for 25 minutes, making it look so easy.  This is after being 0 for 6 over the past two days since he was too sleepy, breathing too fast, or just not interested with feeds.  I gave him a bottle at today's 9 AM feed, and he drank 15 of the 44 mL before he got all tuckered out, and we had to hook the rest up to his NG tube.  The doctor on duty this week isn't concerned about whether or not he gains weight.  He's mainly concerned with getting him to eat more without the NG tube.  It's slow progress, but we're heading in the right direction, praying for patience. 

Tonight Joshua gained another 20 grams, now up to 2300 grams or 5 lbs 1 oz.  He just finished bottle feeding all but 8 mL of his 44 mL feed.  That's great! 

Brotherly Bonding (Cha, Right!)

Joshua had fun today with some special visitors.  Ok, he slept through it, so maybe it was more fun for me. Grandma and Grandpa Gus brought Jeremiah to the hospital to see Joshua. Considering any time I leave the house (even if it's just a trip down the driveway to the mailbox), Jeremiah says, "Mom go hospo, see Baby Joshua," we thought he was due for another visit. My mom packed a picnic, and Jeremiah was most excited about "eat lunch at hospo!" which he said repeatedly during the drive in. I met them in the Ronald McDonald room, a lounge with a playroom right outside the NICU. We had a nice lunch together and decided to head back into Joshua's room so Jeremiah could "SEE BABY JOSHUA!" And this is where the train derailed...While awaiting a couple of bathroom breaks, I (stupidly) pointed out a really cool dump truck to Jeremiah, and we got down on the floor and started playing. Sure, great way to pass a couple of minutes, so I thought. Little did I know I inadvertently sabotaged my plans for a cute brotherly bonding moment and perfect picture to commemorate the event. I could not tear Jeremiah away from that truck. Finally, he agreed to leave the truck to see Joshua, only after I promised he could come back and play with it when we were done. Needless to say, for the next 10 minutes, the duration of his visit (which was 9 minutes too long), Jeremiah thought of nothing else besides that dump truck; he couldn't get out of Joshua's room soon enough. He didn't give a hoot about Joshua, but he sure got mad when he saw Grandma Gus holding someone other than himself!

Hmmmmm...is this a prelude of what's to come?

To his credit, Jeremiah did try to pose for a picture for one millisecond. If you look closely, that's about as open as Joshua's eyes got during their visit.

Grandpa Gus and Joshua Gus, just hanging out.

Me and my Littler Guy (Jeremiah still holds the title of Little Guy).

Tonight Joshua weighed the same as last night, 5 lbs. That's good news, since he had three big poops that probably weighed a fair amount. Just so you can see I'm not the only one obsessed with his bowel movements, check out what I found on our communication board this morning (at the bottom), written by last night's nurse.

Our Big Five Pound Little Man

Big news tonight!  Joshua is now 5 lbs!  He gained 3 oz since last night, up to 2280 grams.  Our little man is HUGE!  He's getting to be so fun.  He is so alert and smiley.  He looks more like a normal baby now, and not a preemie.  He doesn't seem so fragile anymore.  It's nice that I can pick him up and set him down by myself and hold him however and whenever I want and just treat him like a normal baby.  I did his bath yesterday by myself, without any help from the nurse, so I felt like such a big girl.  :)  The preemie outfit he wore today was almost too small, too. 

I talked to the doctor about him today, and he said Joshua may need to go home on a G tube (surgically inserted tube in the abdomen that goes directly to the stomach for feeding) if he isn't eating on his own by 42 weeks.  He's 38 weeks old now.  He said that's not a definite thing, but he wanted us to be prepared for that in case it needs to happen.  We're really hoping he'll kick it in and figure it out soon.  The hardest part is having no control.  We can't push him too much, so it's up to him to set the pace.  He has shown so much progress since last week, and he has four weeks to work with, so I think he'll be fine.

Here's an interesting tidbit:  Joshua is on a small dose of oxygen by nasal cannula, and he'll most likely have to be on oxygen when he goes home, especially since Monument is 1500 ft higher in elevation compared to CO Springs, where he is now.  120 mL equals the amount of oxygen at sea level, and he's only on 25-50 mL.  That means he wouldn't need any oxygen supplementation if we weren't so high in altitude.  I think that's pretty good.

Roughhousing and Warrior Games

We're on a roll, folks.  Joshua gained another 20 grams tonight, up to 2190 grams, or 4 lbs 13.5 oz.  That's four nights in a row of good growth.  He is also improving on his breastfeeding each time.  He's looking great!  He had his final screening head ultrasound.  They were looking at the white matter, which would show signs of cerebral palsy.  It was all normal.  I'm liking these normal test results!

Last week I noticed Jeremiah has become almost hyperactive, running around, jumping, shouting, all full of energy when I get home at night, more so than usual.  He's happy, and it isn't bad behavior, but he's more rambunctious than he used to be.  I was telling my mom this, and she came up with a good reason for this change from my usually quiet boy.  He has been spending much more time with James than with me.  James is always loud and roughhousing and wrestling with him, while I'm the calm, soothing one that reads books and sings and colors with him.  He hasn't had as much time with me and has had a lot of excitement with James, so it makes sense that his behavior is changing a little.  It just shows me how important it is for kids to have both a mom and a dad involved in their lives.  I'm so excited for the day when we can have our family together at home!

Today was a big day for Jeremiah because he got to have special time with Grandpa Bob and Karen, and then Grandpa and Grandma Gus came to visit.  He is so excited!  So are we! 

James is head coach and team physician for the 2012 Warrior Games.  Click on this link, Warrior Games, and see a video promoting the event (it opens up with an excerpt from an interview he gave).  It is so amazing, and he loves working with these inspirational athletes.  It perfectly combines his love of sports, coaching, and medicine, so he's pretty excited about it.  The training camp is this week, and the Games are next week. We aren't planning on seeing him too much since he'll be pretty tied up working the events.  The good news is some of the events are at the Olympic Training Center, which is right next door to Joshua's hospital.  Maybe we can sneak in a NICU rendezvous or two over the next two weeks. 

Growing, Growing, Growing!

Joshua is feeling better today.  He had a big BM and then stopped fussing, so he seems a lot more comfortable.  Last night, he had a huge weight gain of 80 grams, up to 2140 grams or 4 lbs 11.5 oz!  I like those numbers, but I have a feeling that was all attributed to stool.

I wrote that paragraph earlier today and didn't get a chance to finish it until now.  He has had a good evening, too.  He breastfed for 22 minutes and guzzled like a champ.  My hunch about his weight gain was wrong.  He gained another 30 grams tonight, up to 2170 grams or 4 lbs 12.5 oz.  That's two nights in a row of solid growth!  Looks like the MCT oil is helping. 

I forgot to mention a couple of days ago that his hearing test was completely normal.  That's one more  potential preemie problem to cross of the list. :)

Baby Poop, Running, and Other Musings

Guess what I did today!  I went on my first "run" in several months.  It felt so exhilarating getting my blood pumping again and just being outside on such a beautiful day.  Ok, it wasn't so much of a "run" as it was a three minute walk followed by a two minute shuffle, repeated over and over until I reached 30 minutes.  I know it's nothing to brag about, but here I am shamelessly bragging because I see how far I've come since being laid up and sedentary for so long.  It's kind of like a person who's 100 lbs overweight losing their first 5 lbs.  It's a step in the right direction, and that's all that matters.  I chuckled to myself while I was out there because even though I should just be happy to be upright again, I can't shake my competitiveness.  Every time I saw someone, I wanted to shout out excuses for my poor form and spurts of walking, explaining how I just had a baby or that I was on bedrest for almost two months before that.  Then, when I was passing the neighbors that I like, I'd stop walking and run past their houses, just in case they were looking out their window.  Ha ha.  That behavior goes back as long as I can remember, performing my fanciest tricks on the trampoline whenever a car drove by house.  Hey, I say whatever it takes to motivate yourself, go for it.  That's my opinion. 

If you are a sedentary person, I now understand how you feel.  I challenge you to get out and go for a walk/run.  Even if you just start with walking alone or walking 5 minutes/run 30 seconds, get out there and DO something!  You won't regret it (unless you pull a hamstring or something).

I got to spend a lot of quality time with Joshua before church this morning.  In case I haven't mentioned it before, he is one of the two cutest babies I have ever seen!  :)  No bias whatsoever here. 

Last night he gained 30 grams, up to 2060 g or 4 lbs 8.7 oz.  I'll take it! 

I felt so bad for Joshua.  His poor little tummy is just so overstuffed.  He's up to 41 mL of breastmilk every 3 hours with 28 calories/ounce extra added, and he gets beneprotein and MCT oil twice a day.  Understandably, he is having some reflux issues.  I know how I feel after eating french fries, and it isn't comfortable.  Yesterday and today, he has been really fussy, crying, arching his back, and acting like he is gagging during the NG feedings.  It helped a little bit to hold him upright during and after the feeds and put a warm pack on his abdomen.  He was breathing too fast to breastfeed today.  I was wondering why he wasn't drinking when I put him on my breast, and then I saw his respiratory rate was 100, rather than <60, making it impossible to suck and swallow in between those breaths.  That's a little concerning because it can be a sign of infection, or basically any sort of badness, in a preemie.  They're chalking it up to his full tummy pushing up on his diaphragm which puts more stress on his lungs, so they aren't worried.  If it continues or worsens, he'll need a full work up with labs, chest x-ray, etc.

I just called the nurse.  When we aren't there, we're always harassing the nurses over the phone.  They are all so nice.  Not only do that act like they don't mind, but they encourage us to call anytime.  She said Joshua had a large stool, and he seems to feel better after that.  She also said he is stinking up the whole pod with his gas.  I thought it was funny the other day, but now I just feel bad for him.  How embarrassing, and he can't help it.  The worst part is, with all of those added supplements (like that stinky vitamin), he no longer has that sweet poop smell like his mom's.  Just kidding on that last part. 
But seriously, I don't think purely breastfed baby poop is too bad.  Now, with medical intervention, it's disgusting.  This topic of conversation is a slippery slope, so I better wrap it up before I embarrass my sisters.  :) 

Our prayer requests are evolving to less life threatening issues, thank goodness, but if you are still willing, we are so very grateful for your prayers.  Specifically, that he'll grow, and that we'll be able to find the right balance of extra nutrition vs. reflux/discomfort.  We also pray his tachypnea isn't indicative of anything more serious than abdominal pressure on his diaphragm. 

Thank you so much!

Liquid French Fries

Last night the scale wasn't working or available, so the nurse said she was going to weigh Joshua at his next cares time.  I just called in now, and she is on break.  So I still don't have his weight from last night.  I'm so glad it has gotten to the point of his weight being the only big issue we check in on.  We used to ask how many brady episodes (drop in heart rate) or apnea (breath holding) spells he has had, and we haven't had to worry about those things lately.  That being said, I know every time I've breathed my sigh of relief in the past, something bad has happened, so I'm keeping my guard up. 

Yesterday I got to be with Joshua for 3 feeds, and he had one great breastfeeding session then stayed awake for almost three hours.  While I enjoyed playing with him awake, it had its consequences because he slept through the next feeds.  We just used the NG tube rather than trying too hard to rouse him (the best growing comes during that sleep).  He seems to be developing a bit of a circadian rhythm by sleeping all night and being up more during the day.  If he can have his night and day straightened out before he comes home, I'm not complaining. 

They started the MCT oil (liquid french fries) yesterday to try to pack some pounds on him.  There really aren't any risks or drawbacks to using it, but it just adds fat and won't help with head circumference or length.  He's pretty scrawny, so I'm ok if he gets a little more pudginess.  Hopefully it'll show on the scale.

That's about it for now.  All is well!

The Good Ole Days

Last night, I slept through my 1:00 pumping alarm.  I really need an alarm clock of a baby crying because there's not a lot of incentive to wake up to a machine.  I woke up on my own (or I should say "the girls" woke me up) a little after 3:00, and after pumping and laying down for what seemed like only a minute, I left for the hospital at 4:15.  A little after 4:45, I was overcome with deja vu as I walked into the hospital.  I don't know what it was exactly, but the clean, cool, crisp predawn air brought me back to my early morning swimming days.  I remember how excited I'd get to meet James at the pool (that was before we were married) and see what kind of workout he had in store for us gung ho, non-swimmer triathletes.  Back then, by 4:45, we were in the water warming up (or dipping our toes in the water working up the gumption to dive into the chilly water while James was already several hundred yards ahead of us).  This morning, at the same time of day, I was walking into the hospital, and I can't even remember the last time I was in a pool.  Yep, I was struck by a little nostalgia. Sometimes I miss those days, but, as much as I whine about our current situation, I wouldn't change what I have now for any of it. 

I had such a good time with Joshua today.  It was bath day, which is so much fun.  I love how I can now hold him as much as I want and not worry about breaking him or one of his mechanical attachments.   He seems just like a normal newborn baby now.  He loves to cuddle, and he likes it when I sing to him, which must mean he loves me because not many people would tolerate hearing my attempts at singing.  :)  He did really well in his feeds.  At 5:00, he drank for 20 minutes and didn't need any more through his NG tube; same goes for 11:00, when he drank for 22 minutes.  He was pretty sleepy during his 8:00 feed, so he only drank 6 minutes and got the rest through his tube.  We're making great progress!  He doesn't want the bottle much, though, so when I'm not there he usually gets fed through the tube.  Hopefully, that will change, or else I'll have to be there 24/7 to make enough progress to get discharged home. 

James just called in for an update.  Joshua lost weight again, down another 10 grams to 2030 g or 4 lbs 7.6 oz.  The good news is he took most of the bottle for the nurse at his latest feed.  Everyone says this last hurdle (eating and growing) is the hardest and takes the longest to achieve.  I'm working on patience.  We're so close (yet so far).  Thanks for sticking with us.

Quickie

I had some dental work done today, so I'm feeling a little sore and not up to writing too much.  My little filling that fell out months ago came back to haunt me.  I was supposed to get it fixed in January, but I canceled the appt since I was on bedrest.  Now the tooth is pretty decayed, to the point that I may need a root canal.  Yikes!  For now there is a "hat" on it, and hopefully that will be sufficient.  My tooth has been the least of my worries over the past few months, but as I was laying there getting drilled on, I was kicking myself for letting it get so out of control.  At least all of my thinking was in a drug induced haze, thanks to the nitrous oxide.  That's good stuff!

Tonight Joshua lost 10 grams, so he's at 2040 grams, which is still 4 lbs 8 oz (or 7.96 oz to be exact). He did great for our two breastfeeding sessions.  So great, in fact, that he didn't need to have any extra supplementation through the NG tube.  After each one, 16 minutes and 18 minutes of drinking, respectively, he was pretty content and fell asleep and slept until the next feeding.  The doctor changed her plan a little to increase my feeds to three a day.  Since he's most alert in the mornings, it'll be best for us to have me there at the 0500, 0800, and 1100 feeds.  That means I better start getting to bed earlier if I want to function well during the day. 

Speaking of that, nighty night!

A Day at the Zoo

I had fun with my boys today!  Jeremiah and I spent the morning at the Cheyenne Mountain Zoo with my friend Kimberly and her adorable sons Noah and Jonah.  We had such a wonderful time; it was so fun to get away and do something new.  Jeremiah was super excited the whole time.  I was so impressed with how interactive this zoo is.  A highlight was feeding the giraffes.  There were 17 (that I counted) down in a huge pit, so their heads are at the level of where we were standing.  They came right up to eat out of our hands.  Jeremiah wasn't too fond of the 18 inch tongues reaching out and grabbing food from his hands, so he'd throw it on the ground right in front of them and then run away giggling.  I was thoroughly entertained.  The grizzly bears were also up close and personal (through fiberglass), and hours later Jeremiah still got all excited saying, "brown bear eat fish!" since the bear jumped right into the water in front of us and swam with the fish.  He got to feed the birds with food glued to a popsicle stick, too. 

Everything was so exciting for Jeremiah, but I have to tell ya...he was just as excited looking at inanimate objects.  When we arrived, he noticed the bobcat (as in mini bulldozer, not the animal) working before he saw the giraffes.  Instead of looking at zebras, he wanted to watch the backhoe work.  And while the rest of us were all enthralled with the orangutans, Jeremiah pointed to the parking lot in the distance and exclaimed, "SCHOOL BUS!"  Next time I might save the money and take him to the local bus garage or construction site.  :)  

 The boys watching the otters play.

 So fun to walk through the small tunnel just for kids.

 Three little snow leopards

Why, hello there, Mr. Giraffe!

After the zoo, I got to spend the afternoon with Joshua.  He slept hard for 2.5 hours of kangaroo care.  I was there for two feeding sessions, but he was sleepy and showed no interest in latching on, so both times he ended up getting all of his food through the NG tube.  Right as I was about to leave, he was wide awake and looking like he wanted to play...not the best timing for me.

BIG WEIGHT GAIN TONIGHT!  Joshua gained 60 grams, up to 2050 gms or 4 lbs 8 oz.  He passed the 2 kg mark.  This morning they decided not to start the MCT oil (liquid french fries) because they thought that would make him gain weight, but not necessarily the kind of weight they'd want him to gain.  As the nurse reported to me, "the MCT oil might make him short and fat, and they want him long and lean."  At this point, I don't think we have to worry about him getting fat, but good to know he had a nice gain tonight. He may not need anything more than his current body building supplements.  Thank you so much for praying for his growth! 

The Entertainer

I showed up at the hospital today, and the nurse was holding Joshua outside his room, at the nurses station (the cords and oxygen tubing are really long).  That's a good sign because a month ago, they never would have taken him out of the isolette and exposed him to the noise, lights and movement.  He's like a normal baby now!  The funny thing is, as I walked up, the doctor and nurse were laughing really hard.  The doctor said, "What are you teaching your son?!"  Evidently, he was nonstop entertainment with his noises and smells since he was full of gas.  They said it was so funny because his timing was so perfect.  There would be a pause in the talking, and then Joshua would let one loose, as if trying to contribute to the conversation.  Then he would just let out a  sneaky squeaking one, mixing it up a little.  Yep, my son has skills!  James has been working with him on that one...so proud.    :)

Joshua looked great today. His eye exam was normal, so no signs of retinopathy of prematurity.   One preemie concern to cross off the list, yay!  We just have to follow up with another exam in 5-6 months in the peds ophthalmology clinic. 

He gained a little tonight...10 grams, up to 1990 g or 4 lbs 6.2 oz.  Not as huge of a gain as we had hoped, but I'll take a gain over a loss any day.  Today the plan was to add MCT oil (medium chain triglycerides, pure fat) tomorrow if he didn't gain weight tonight.  We'll see tomorrow if 10 g is considered enough, or if they'll add it.  The nurses call it liquid french fries.  If I had a choice, I'd take the liquid chocolate chip cookies instead.

The Wind Knocked Out Of My Sails (A Little)

This morning I finished my 3:00 AM pumping session and tried to fall back asleep.  Failing miserably, I gave up and drove to the hospital to see Joshua.  It ended up being a great decision because at 5:00, he was wide awake and hungry.  I had him on my breast for 35 minutes, and he drank for 20 of those minutes.  It was so successful that we didn't need to add any more milk through his NG tube.  I was excited, and it was so fun to have him acting like a normal baby and me acting like a normal mom.  We had fun the rest of the morning together, just cuddling.  I usually just do kangaroo care, so I only see the top of his head, if that.  Today I held him in my arms and looked at him for a couple of hours, and that was fun to see his face while he was sleeping. 

At 7:30 AM, he woke up on his own, acting hungry (it was the first time he initiated it with me picking up on his cues to start early, rather than just scheduled q 3 hours), so I put him back on my breast.  He ate for a total of 11 minutes, so we gave him half his normal amount of milk through the NG tube.  Then he pulled out the NG tube again.  Poor guy had to go through getting a new tube for the 4th time in a week.  I don't think it's faulty tape to blame...he's just so smart he figures out how to pull it out MacGyver-like.  My child is brilliant!  :) 

I was all excited...until the team came in to round.  There's a different doctor on the team (they rotate in and out every week), the one who was on during our NEC scare.  This one, Dr. T, is nice, but she's more matter of fact, cut to the chase-like, instead of more touchy-feely and sweet like the dr last week.  Dr. T has more of a surgeon's no-nonsense personality, and James likes her and can relate well to her.  In my more emotional, hormonal, mommy mode, I tend to prefer the touchy feely style.  Anyway, today Dr. T knocked the wind out of my sails a little.  I was so excited, thinking we're ready to be on our own, going home soon, etc.  She said she wanted to get a follow up echocardiogram in 4 weeks.  I said, "Oh, good.  We're supposed to follow up with cardiology two weeks after we go home, so the timing will be perfect."  She looked at me like I was crazy, and she said, "oh boy, you really ARE optimistic, aren't you!"  She said it's hard to predict, but she's thinking more like 4 weeks.  That made me feel a little bad because I had 1-3 weeks in my head, heavy on the 1 week side.  No sense getting worked up over things out of my control, I guess; I just have to adjust my mindset.

She delivered one other blow, too.  She was nice about it, but she said she doesn't want me breastfeeding more than two times a day for awhile, until he gets bigger.  My breastmilk alone has about 20 calories per ounce, and they supplement it to make it 28-29 calories/ounce.  He needs that extra nutrition, so they want almost all of his feeds to be my pumped milk suped up with their calorie concoction.  My little body builder needs his protein shakes to build up those muscles!  So much for being excited about breastfeeding...  {Zoom in here for close-up of my sad face with trombone going "wwwwwwhhhhaaaaaaa-wwwwuuuuuuuhhhhhh, Debbie Downer style}.

It is getting harder and harder for me to be away from Joshua.  It is so not natural for a mom and baby to be separated.  Of course, we are not the only ones going through this, and compared to many other families, we have it easy.  I realize that.  But it's still hard.  I don't want to miss out on any moment, even if it's just a diaper change.  I also don't want to miss out on anything with Jeremiah.  He is so resilient and is handling everything so well.  He's loving all this one on one time with James, his grandparents, aunts and uncles, and cousins, and he is getting great care when I'm gone.  But I feel like I'm missing out.  I see Jeremiah even more attached to James, and it makes me feel bad that I'm not his "main squeeze" anymore.  I can't have it all, so I just have to be patient for awhile.  It won't be long (I hope!) before we can adjust to our new normal, home together as a family.  I keep telling myself to appreciate the help we have in the NICU.  I imagine I'll have moments that I wish I could have "free" (if you call thousands of dollars a day free) childcare and get a break from two kids.  Ok, that's enough whining for now.

James and I had an interesting revelation last night.  We have had some tension between us for a couple of days.  Finally, I couldn't stand it any longer, so I just blurted out, "I feel some resentment toward you because you are handling this all so well, Mr. Smooth, and I feel like an emotional wreck."  He was shocked, and he said, "You're kidding.  I was thinking the same thing about you!  You actually think I'm handling this well?"  Big eye opener for each of us.  I think being in survival mode, we each have been wrapped up in our own thoughts, feeling like we aren't doing well, but trying to act like we are.  As with any issue in marriage, communication is soooo important!  Just talking it out helped so much.  After this discussion, we did our devotional, and it was so perfect for us right now.  It's from Jesus Calling by Sarah Young, dated April 15th.  Check it out:

     "Trust Me, and don't be afraid.  Many things feel out of control.  Your routines are not running smoothly. You tend to feel more secure when your life is predictable.  Let Me lead you to the rock that is higher than you and your circumstances.  Take refuge in the shelter of My wings, where you are absolutely secure.
     When you are shaken out of your comfortable routines, grip My hand tightly and look for growth opportunities.  Instead of bemoaning the loss of your comfort, accept the challenge of something new.  I lead you on from glory to glory, making you fit for My kingdom.  Say yes to the ways I work in your life.  Trust Me, and don't be afraid."   Isaiah 12:2, Psalm 61:2-4, 2 Corinthians 3:18.

I just called the night nurse, and Joshua weighs exactly the same as last night; no more, no less. Not surprising since his diuretic dose doubled, but it's still disappointing.  Grow baby, grow! 

 

Growth Curve Roller Coaster

What a great day in the NICU!  I got to be there for three feeds, and Joshua did so well with the breastfeeding.  He latched on and went to town with the first and third feeds, and he was all tuckered out for the second one.  His nurse today is a lactation consultant, so she spent a lot of time helping us out.  We're pros now!  In between feeds, we got to do skin on skin cuddling.  I remember how it was doing kangaroo care for the first time, when he weighed 2 lbs 1 oz, and now he seems so huge in comparison.  I already feel so nostalgic about back when he was just a tiny thing, before he "got all growed up" into the little man he is now.  :)

Speaking of little...I have good news and bad news (I know, there always seems to be a bad news along with the good news).  First the bad news...the doctor printed off his growth curve for me, and he has fallen off the chart.  He was trucking along in the 3rd to 10th percentile for weight, almost hitting the 10th percentile line a couple of times.  Over the past week, however, he has gone below the lowest line, which is < 3rd percentile.  To put it in perspective, he'll be 37 weeks tomorrow, which is officially full term.  As of last night, he weighed 4 lbs 3 oz, and that's pretty small for a newborn (Jeremiah was 8 lbs 4 oz at 41 weeks).  She attributes the weight loss to the diuretic use.  She said it sometimes takes up to a week to establish a new normal and start growing again. 

Now the good news:  James was there for his weigh in tonight, and he just called saying Joshua gained 60 grams (2 oz) since last night!  He jumped up to 1980 grams, or 4 lbs 5.8 oz, and his length is 16.9 inches.  Praise the Lord!  I have no doubt it's the prayers from all of you working in our favor.  Unfortunately, the doctor just ordered to double his dose of the diuretic starting tonight because he was increasing his work of breathing a little bit today, so he may pee off his weight again.  We'll see...

Jeremiah got a couple of hours of Grandma time (thanks, Pat and Randy), so James and I could have a mini date in the NICU.  Here is a pseudo family picture.  One of these days, we'll get all four of us together in the same shot. 

Little Guzzling Gus

Another great day in the NICU.  This morning, Joshua was awake and alert for the longest block of time I've ever seen, about 7:45-10:00.  At 8:00 we had another great breastfeeding session, but not quite as incredible as yesterday.  He slept through the 11:00 feeding, and at 2:00 he was awake but more interested in using me as a pacifier than actively working for his food, so he has been getting most of his feeds through the NG tube. 

I just called his nurse, and he lost 10 grams tonight, down to 1920 g or 4 lbs 3 oz.  :(  I don't know what's up with him not gaining weight.  He just seemed to blow right through the 3 lbs range, and now he's stuck at 4 lbs.  Prayers have helped tremendously in the past, so if you have it in your heart to offer even more prayers for the Bales family, please pray for Joshua to grow.  Thank you so much!

I asked the doctor if she has any inkling on when we'd be ready to go home, and after a lot of deliberation, her answer was one to three weeks.  It's nice to start seeing a light at the end of the tunnel. 

There are over 50 NICU beds in our hospital, and they are usually full.  It's a regional center, so babies are sent here from all over the state.  The NICU is set up in pods, with six babies in each pod.  We each have our own rooms (only three of the six have windows, and we're thankful we have one with a window).  There are no doors, just curtains, so we can see and hear what's going on with the other babies, and there are a lot of interesting stories.  Joshua's neighboring room seems to be a revolving door.  There have been six babies in and out since we arrived, and the newest neighbor is due to go home tomorrow after arriving by helicopter yesterday.  I heard the nurses give report on him, and I was so intrigued by his story that I went and introduced myself to his mom today and got her to open up to me to share her story.  Get this:

Yesterday, she had really bad abdominal pain, which she thought was an ulcer, and it got so bad that she went to the ER.  An hour later, she gave birth to a baby, and she had no clue she was pregnant.  She had taken two home pregnancy tests over the past several months, and they were both negative.  She thought she had a tumor since her abdomen was hard, but she never went to a doctor because she was sure she would need surgery, which scared her to death.  She never got around to getting it checked out.  She didn't notice if she gained any weight, and she wore her normal clothes the whole time.  I asked her if she ever felt the baby move, but she said she just thought it was her ulcer acting up.  This was her third pregnancy, and she's in her 30's.  She's very tall and has a large frame, but she is not at all obese.  It was fascinating talking to her, seeing how powerful the mind is when you're in denial. 

My first thought with all this was "that poor ER doctor." She went to a small town ER 2.5 hours away from here, and they didn't have labor & delivery or any specialists, just the dr in the ER. Hmmm, frighteningly similar to the ER I work in. As much as I loved delivering babies years ago, it's definitely not something you want rolling into your ER when you're not equipped to handle it.  

Before my most recent pregnancy, I never would have believed it would be possible to not know you're pregnant, but with Joshua I kind of get it.  I had bleeding once a month for the first three months, and I only gained about 10 lbs throughout the whole pregnancy, so at times I never felt pregnant...but I suspect I would have grown a lot in the last 10 weeks that I missed out on.  Thank goodness I received the prenatal care that I did, or we probably wouldn't have a Joshua with us today.
 

    

Woooo-Hooooo! :)

Ok, today was a big day for us.  I am still ecstatic just thinking about it.  First of all, I got to give Joshua a bath, and that alone would have been a big highlight.  Then we tried feeding, and he latched on and drank for a total of 15 minutes.  He was so alert and into it.  He's a breastfeeding machine!  The key was adding a silicone shield to help him latch on since his suck wasn't strong enough to get a good grip.  Compared to his previous attempts of "just playing," it was incredible how he just drank up like a champ, as if he's been doing it for weeks now.  That makes me so excited because it's the biggest hurdle before we can go home.  Of course, this is just a start.  He has to prove he can drink enough with his mouth to warrant the removal of his NG tube.  Then he has to show he can gain weight without the NG tube in.  If it counts for anything, he has pulled his tube out 3 times over the past 5 days.  He's making it pretty clear what he thinks of that thing. 

Tonight, Joshua gained another 10 grams, so he's up to 1930 grams or 4 lbs, 4 oz.  This morning the neonatologist said they're a little concerned because he isn't gaining weight as well as he should be at this point.  It's a fine balance because she wants to add calories, but too many extra calories can upset his tummy.  Another factor is adding volume can be bad since he already needs a diuretic to keep the fluids down.  So she told me rather than adding even more calories, she wants to tweak my breastmilk. She placed an order for the lactation consultant to come talk to me to discuss how I'm pumping, the timing of it, my caloric intake, etc.  I have to admit....while I am, first and foremost, concerned about Joshua not gaining much weight, inside I was secretly hoping the lactation consultant would tell me my milk doesn't have enough calories; I better eat more cookies and ice cream to beef it up a little.  I seriously prepared myself for that, mentally picking out my favorite Ben and Jerry's flavors for a stop at the grocery store on the way home, and having my "doctor's orders" excuse all lined up in case anyone asked why I'm oinking out.  Much to my dismay, I later found out that my milk production is fine, and I don't have to change my diet at all.  My "ice cream makes better milk" theory didn't pan out so well.  :(  Oh well, I tried. 

The bottom line is, I will now pump 5 minutes (the skim milk comes out first, mostly water) and separate that out.  Then I'll collect the rest of the milk, the "hindmilk" and feed him only that fatty, more caloric dense milk for the next week, and see how he does.

I just realized this whole post has been about breastfeeding.  Sorry, guys.  I've tried to edit out all of the "too much information" details.  It goes hand in hand with caring for an infant, so I'm not too embarrassed.  One thing's for sure...as much as I have been whining to my family about feeling like a cow being hooked up to the milking machine all day, I am so thankful I have a heavy duty, electric pump.  Special thanks to my sister Heidi for passing her pump along to me and giving me perspective of how nice I have it when I was complaining to her.  I could get stuck using a hand pump, which would take forever, and I wouldn't be able to multitask at the same time. 

Oh, one more thing, since we're on the topic.  My friends Scott and Rachel get extra good neighbor points for letting me bring over a bunch of frozen milk to put in their freezer since our freezers are overflowing.  I guess it's a good thing my ice cream theory didn't work out because I wouldn't have room in the freezer for it anyway.  See, things happen for a reason.  :)

Happily Boring Post

I decided it's a good thing when I can't think of anything to write in my blog.  It's good to not have anything to report, off the roller coaster (for now at least).  Joshua is maintaining a status quo.  He is still breathing faster than we'd like to see, but he doesn't look or act sick. 

We had so much fun together today.  He was very alert and responsive, except for the time he spent sleeping during our kangaroo care.  All of his funny faces just crack me up.  I was there for two of his feeding sessions, and we tried breastfeeding each time.  The first time, he nuzzled (as they call it) for about 20 minutes, wide awake and alert, having fun and trying so hard, but he just couldn't latch on.  The second time, he wasn't acting very interested in it, so I didn't force it.  I'm realizing it may be a slow process to get that NG tube out and get home, but we're heading in the right direction. 

When I got there today, I noticed he no longer had the head of his crib elevated, and he was laying level.  I asked the nurse why the position of his crib changed.  He said the doctor requested it because it's one more way to get Joshua ready to go home since he won't have his head elevated at home...another baby step heading in the right direction. 

He only gained 10 grams tonight, up to 1920 grams or 4 lbs 3.7 oz.  Several days ago, he was at 1925 grams, so he really seems to have stalled out on his usual growth rate.  He has been pooping a lot, and the diuretic is doing it's job getting rid of fluid, so maybe we can just chalk it up to that.  I'll ask the doctor tomorrow if that's something we should be concerned about. 

MFM Reunion

Today I ran into Dr. LaMonica and Dr. Klein, two of the three MFM doctors who took care of me during my pregnancy.  It was the first time I had seen them since Joshua was born.  Dr. LaMonica is the man we called Dr. Buff.  Dr. Klein is Dr. Middle, the one who delivered Joshua.  Dr. Hollard is Dr. Pessimist, and I saw her for the first time a couple of days ago, and she gave me a big hug. So did Dr. LaMonica.  I sure got attached to all three of them.  Looking back, for seven weeks, they were my main link to the outside world since I only left the house to see them.  It was kind of a strange connection.  The first couple of weeks after Joshua was born, as I walked through the door of the hospital and continued past their clinic to go to the NICU, I felt sad that I couldn't see them.  Not only did I miss them, but it was yet another reminder that I should still be pregnant.  It's hard to explain.  I have never been a long term patient before, so I have never felt that attachment to my doctors until now.  I am so impressed with the care we have received from their clinic and in the NICU.  The doctors and nurses are all amazing.  It has really made me want to step up my game when I get back on the other side of patient care. 

Joshua is about the same today as yesterday.  He is now on a chronic diuretic since he responded well to the Lasix yesterday.  The cardiologist wants us to follow up with him two weeks after Joshua gets discharged from the NICU, and he'll do another echocardiogram at that time and determine how long the diuretic will be necessary. 

He is still breathing faster than he should be, with a respiratory rate in the 60-80 range instead of the normal <60.  I didn't get to feed him today because his breathing wasn't stable enough.  He needs to have a rate of < 60 and no signs of working hard to breathe.  Otherwise, he risks aspirating the milk or getting frustrated and not wanting to drink in the future. The key in these early stages of feeding is to make it enjoyable for him, so he'll want to do more.  I guess if I were having difficulty breathing, I wouldn't enjoy trying to suck and swallow on top of it, so I understand. Today a therapist working with Joshua talked to me for awhile about this.  I want us to go home so badly, and this is the last task to accomplish, but we have to make sure we go at his pace and not push him too much.

Tonight Joshua weighs exactly the same as last night, 1910 grams or 4 lbs 2 oz.  He has hit a plateau over the past 4 days or so.  The past couple of days, he's had nasal congestion, and the nurse tonight said he's had a greenish yellow discharge, so it looks like he had a cold.  This is how it started a couple of weeks ago when he had viral pneumonia, so we're praying it doesn't progress to that.

We're Not Out of the Woods Yet

Oh boy...you'd think I'd learn, one of these days, to get the "we're out of the woods now" idea out of my head after a good day!  Last night, James was able to feed Joshua 17 mL of milk from a bottle.  He was so alert, and he just guzzled it down...suck, swallow, breathe.  No problem.  That's about half of what he needs in a feed, and it was only his second attempt trying, so we were pretty excited.  In retrospect, I should have waited until he was more awake when I tried yesterday because he was half asleep, so it didn't work as well for me.  After that good feeding episode last night, I was fantasizing about how we might go home soon...

This morning I got to the hospital all excited to feed Joshua again, but I didn't get a chance to feed him.  He was tachypneic (fast respiratory rate, a sign of distress), and he was having to work a lot harder to breathe, showing retractions, using his chest muscles and other "accessory" muscles, to help get the air in, also a sign of distress.  The nurse and I were concerned, so she called the NNP (neonatal nurse practitioner), who came and evaluated Joshua.  Long story short, she ordered two more doses of Lasix, since that helped last time.  Lasix is a diuretic to get rid of extra fluid.  He has some holes in his heart (not alarming for a preemie), and it can't handle pumping that amount of fluid, so it back flows into the lungs. The lungs, underdeveloped due to prematurity, can't handle that extra load, so that's why he had increased work of breathing.  After one dose of Lasix, he looked so much better, as good as he has been over the past few days, so he didn't need to go back to high flow oxygen.  {Side note: I just called in, and the nurse said he's tachypneic with retractions again.  He's due for his next Lasix dose in an hour, so hopefully he'll bounce back quickly after getting that dose like he did this morning.}

I was able to feed him 3 hours later with his next feed, but he was tired again.  He sucked about 6 mL from the bottle and swallowed about 5 of that.  I tried to breast feed him, and he just played, which is to be expected at this stage of the game.

The elevated liver test follow up came back decreased (great!), so they won't need to do a full GI workup, just recheck it in 2 weeks.

He lost weight last night, to under 4 lbs 3 oz.  Tonight he gained a little but still weighs in at 1920 grams, or 4 lbs 2 oz, about the same size as his friend Melia Robertson.

A little ditty about Jeremiah...I get such a kick out of him.  It's so fun to have him talking now.  Yesterday when I left the house, I said, "See you later, alligator!"  Today, as Jeremiah and I were leaving to go for a walk, he looked back at the house and said, "Bye bye, alligator!"  At first I didn't get what he was talking about, and then I remembered he was trying to repeat what I said the day before.  He almost got it right; not bad having only heard it that one time. 

Bye bye, alligators!

Bath Pictures and Bottle Feeding

Another big milestone today!  Now that Joshua is off high flow oxygen, I got to try to feed him with a bottle.  The key word here is TRY.  He has a long way to go before he masters the whole suck/swallow/breathe thing.  He didn't really get it.  I figure he got about 2 mL (out of 37 mL) of milk in his mouth and probably swallowed 1 mL before he got too tuckered out and fell asleep.  We worked on it for about 20 minutes.  He seemed pretty confused with the whole thing.  Latching on to the breast will probably take awhile.  We tried that earlier, and he just played with it.  But hey, it's a start.

The nurse told me he doesn't think Joshua will be in the hospital much longer, so I should start watching the mandatory videos that parents need to watch before going home.  That was a shocker!  I don't want to think about going home yet because I don't want to be disappointed if it takes a long time.  He is 36 weeks today, and all he has left to prove in order to go home is that he can eat with a bottle or breast and gain weight on that alone.  That can take weeks, so I'm not going to think about discharge too much yet.

Here are some pics from my first time bathing Joshua a few days ago.  This was the day before he transitioned to the crib.  

Joshua is not too excited about getting naked for his bath.

We just put the tub right in his isolette and turned the bed's heat on high to keep him warm.

Motherhood Mayhem

The best laid plans...

Happy Easter!  Today I went to see Joshua early, so I could be home in time for the late service.  As I was leaving the hospital, the nearby church was letting out, and I saw so many kids dressed in their Sunday finest.  I was so excited for Jeremiah to be one of those little darlings, so I rushed home to make sure we had plenty of time to get ready for the Easter Service.  Easier said than done.

For starters, he wasn't even home when I got there.  James took him on a spontaneous hike (in the backpack carrier) up Mount Herman this morning, a climb in the foothills near our house.  I tried not to be jealous they went without me (I LOVE Sunday morning hikes!) and reminded myself that I got to hold Joshua this morning, which was even more special. 

The guys arrived home about 5 minutes before it was time to leave for church.  I was dressed in my best dress, which happened to match Jeremiah's cute little outfit his Grandma Pat found for him last year.  Finally, he's big enough to wear it.  The camera was out, ready to snap some great family pics, which would now have to be done after church since time was of the essence.  Last night, I tried to get James to wear a tie that matched us, but that was a battle I didn't even get into.  Knowing how the only thing he hates more than dressing up is being told what to wear, I hinted I'll be in a fancy dress, and I'd rather he not wear shorts or jeans.  Then I tried reverse psychology and begged him to wear jeans.  It worked, and he ended up in khakis and a button up shirt, but no tie.

Jeremiah came in, all excited about the hike, and as he tried to tell me all about it, I sneakily made my move to get him dressed.  He wanted nothing to do with changing clothes.  Let's just say....imagine exactly what you think of in your "worst case scenario" two year old stereotype, and you can picture sweet Jeremiah going ballistic this morning.  I started out trying to barter with him, manipulate him into wanting to get dressed for church, bribery, you name it.  I ended up trying to manhandle him into the outfit, which evidently has invisible monsters attached to it based on the level of decibels his screams were reaching.  Nothing was working, so, exasperated and full of defeat (and 10 minutes late by now), I just said "Fine.  What do you want to wear to church?"  I arranged the khaki pants and polo shirts on top, so he'd pick one of those at least.  Oh no...he goes straight to the bottom of the pile and pulls out the cookie monster sweatshirt, way too small stained t-shirt from last summer, and sweatpants.  Yep, that's what he wore to church on Easter Sunday. To his credit, he did pick out his dressy church shoes to go with the ensemble (which made it look even more ridiculous).   

Head hanging low (mine at least; James thought the whole thing was hilarious), we arrived at church. As we rushed in, I tried to lick my fingers and wipe Jeremiah's dirty face while smoothing down that rascally cowlick (I ended up accepting defeat and just grabbed some lotion to spike it up all over), all while he tried to run away from me.  After dropping Jeremiah off to play with all the perfect little ladies and gentlemen looking like little royalty, we were shuffled off into the overflow room since the sanctuary had reached capacity.  Or, as I like to call it, the loser room, for those of us who don't have it together enough to make it to church on time.  James tried to make me laugh by sticking the "potty training in progress" sticker on my back, but that was overdone from last week, and I was still fuming a little.  He then pointed out to me that he was one of the best dressed men in the loser room except for the little boy a few rows up in a suit and tie. 

As I sat there, I let it all go and tried to step back and laugh at the situation.  It's Easter!  There isn't a more important holiday than this.  I'm pretty sure I can bank on the fact that Jesus didn't rise again on the condition that we all show up to church on time in an uncomfortable, stuffy outfit.  I just needed a good attitude adjustment to get my priorities straight.  I'm also pretty sure I'm not the first parent to not-so-gracefully bow out of a losing battle with a 2 year old.  James told me to just get used to it because Jeremiah's a big boy now, and my days of dressing him are over, but not to worry because I'll get a chance to dress Joshua cute for the next 2 years.  I'm not ready to give up on the issue, but I'll just chalk up today as a story to look back on and laugh.  I'm proud to be a Mom4Life!

Fantasy (above)...

...Reality (below)

In Joshua news...he is now on LOW FLOW OXYGEN!  That means he fits one more criteria for coming home, and he can now start to try eating with a bottle or breast.  I'm excited for that! 

Here he is posing with his Easter basket, given to him by hospital volunteers. 

Easter Eve

My computer crashed, and James needs to use his computer, so I won't write much tonight.  Joshua is doing well.  He is down to 1 liter on his high flow oxygen and doing well on that, so he's very close to getting off the high flow and on to the low flow in the next day or two.  Once he's on low flow, we can work on feeding him by bottle and breast, so eventually we can get that NG tube out. 

He weighs 1900 grams tonight, up 40 grams from last night, putting him at 4 lbs 3 oz. When I get my computer fixed, I'll upload more pics. 

Happy Easter!

Big Boy Crib!

The big news today is Joshua is now in a big boy crib!  No more isolette/incubator!  He is maintaining his temperature very well on his own.  That's one of the criteria crossed off the list, closer to going home.  Now we just have to get him weaned off high flow oxygen and eating on his own.  Tonight he gained another 20 oz, still 4 lbs 1 oz (actually 1.6 oz, to be exact).

Check out the big boy crib!



Joshua has a new neighbor.  The baby next door arrived last night right after delivery, and he weighs over 10 lbs.  It's crazy, after so many weeks staring at tiny Joshua, his size is the new normal to us; that big baby was cute, but he looked so funny to me, as huge as he was.  James said we better be careful because he could eat Joshua.  :) 

We are starting to get our house ready for Joshua's homecoming.  I figure the time will fly before he comes home, so we better get a jump on it.  Today James asked Jeremiah where Joshua should sleep, and Jeremiah replied, "Joshua sleep in Jer-Mimah's crib!"  It was so sweet...he wants to sleep with the baby.  I think he'll be a good big brother.  I also think he doesn't have a clue how his world is going to change.  It will be interesting to see how it goes.

Power In Weakness

What a fun day!  I got to give Joshua a bath for the first time (the nurses have bathed him when I haven't been there).  We had so much fun playing.  Ok, I better rephrase that...I had so much fun playing.  He pretty much screamed bloody murder through most of it.  At first he liked it, like he was in a hot tub. But then when I started soaping him up, he changed his mind.  I still thoroughly enjoyed it.  I didn't have my camera with me, so I took a few pics on my phone, but I haven't yet figured out how to get them from my phone to the computer.  If I can figure it out tomorrow, I'll post them (don't hold your breath since I'm not too technically savvy). 

After his bath, Joshua got his reward by getting kangaroo care for a few hours afterward. Now THAT I know he loves. He slept the whole time.  He's getting nice and spoiled with cuddle time. 

He gained an ounce tonight.  He's up to 4 lbs 1 oz now, or 1840 g.  They increased the feeds to 32 mL every 3 hours and increased the protein and caloric supplementations because they think he is still too small.  He has been hanging out at < 3% for his age on the growth chart for the past month.  I was hoping he would have caught up a little by now, but looking back at how often his food has been stopped, it's not surprising he has been slow to gain weight. 

Joshua had an abdominal ultrasound today because of his elevated liver test, and it was normal.  The elevation is probably just from being on TPN (nutrition through the PICC line) for so long.

Today I went to BSF (Bible Study Fellowship) for the first time since mid January.  It was so fun to see my friends again and pick up on the study.  One passage struck me...

2 Corinthians 12:9-10
⁹ But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. ¹⁰ That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.

I have to admit I can't say I "delight" in the difficulties we have been going through.  I'm going to try to change my mindset on that.  But it is a good point that when I am weak, it gives God a chance to step in and show off His strength.  James and I were talking about this.  We used to feel like we were pretty strong, but by trying to be self sufficient, we weren't letting Christ work fully in our lives.  Over the past few months, we have definitely realized how weak we truly are.  We have absolutely no control over Joshua's medical issues, and that has really thrown us for a loop.  Out of necessity, we have relinquished all control and just handed Joshua over to God.  Over and over, Christ has used this as an opportunity to show us His strength by showing us His miracles, from the serenity I had on bed rest to Joshua repeatedly proving the medical community wrong and overcoming obstacles.  God has strengthened our marriage and drawn us closer together as a family.  As much as I have tried to keep a good attitude through all this, I still catch myself whining about it.  Then, inevitably, I hear of another family's story that seems much more challenging than ours, and I'm humbled.  I am just so thankful Joshua is doing as well as he is, so I can't complain about anything.  It's just nice to know when I feel so weak and overwhelmed, I'm setting the stage for Christ to perfect His power.

FOUR POUNDS!

The big news today is Joshua finally hit 4 lbs!  He had a huge gain tonight, totaling 1815 grams or 4 lbs even.  That's my big boy!  Now I get to toot my own horn for a sec.  Back when my dad said Joshua will reach 4 lbs by April 1st, I said "No way, maybe by April 5th."  Am I right, or am I right?  Of course it was just a guess.

Not much else to report.  All is status quo. I love that little guy. 

I'm not feeling too inspired to write much tonight, and I'm super tired, so that's it for now.

When Can Joshua Go Home?

Here's the latest medical news on the Joshua front. 

Yesterday he had an echocardiogram to rule out a patent ductus arteriosus and other abnormalities that would explain his intermittent heart murmur. The blood flow through the heart changes drastically from the time in the womb connected to the umbilical cord to living in the outside world.  Sometimes certain valves don't close as they should after delivery.  The good news is Joshua does not have a problem with that.  Everything is normal except for an overriding SVC (superior vena cava). This is not a significant finding, and it just needs to be followed up with a repeat echo in a year. 

Today his direct bili (liver test) was elevated. The most likely culprit is being on TPN (total parenteral nutrition, through his PICC line) for so long and now being off it.  They are giving him a medication to help breakdown the bili to lower that, and they'll recheck in a week.  If it's still high then, they'll have to consult GI and run a bunch of tests.  If it normalizes (as they expect), it confirms their TPN theory, and we can just forget about it.

Joshua has his routine eye exam today.  A lot of preemies have eye issues, so everyone gets the screening exam.  His exam was completely normal for a preemie.  Yay!

Tonight his weight decreased by another 15 or so grams, to 1735 grams or 3 lbs 13 oz.  He had 3 nice stools in the three diaper changes before the weight, so they may have something to do with the lack of growth.  He is also new to just getting milk and not getting TPN, so I think it's just his body adjusting to the change.

A few people have asked us how they will decide when we'll go home, wondering if he has to reach a certain weight.  No, his weight doesn't matter.  We have been told it should be around his due date (May 7) plus/minus 2-3 wks. There a few criteria they look for:

1. He needs to maintain his own body temperature outside of the incubator.  Right now, he is almost doing that.  The heat is turned down very low, and the top is up, so he's exposed to room air.  They turn off the heat for large chunks of time, and he keeps a normal body temperature (tonight he was a little cool, so the heat is back on now).  Within a week, they may transition him to a regular "big boy" bassinet without any heat.

2.  He needs to breathe on his own but can be on low flow oxygen.  Now he's on high flow, so he needs to be weaned down to low flow.  The weaning is going very slowly since he tends to act up when they decrease his settings.  Living at this altitude with decreased oxygen isn't helping him out at all (and our home is even higher, about 7400 ft). Interestingly, one neonatologist told us when he did his fellowship in Boston, about 2% of the babies were discharged from the NICU on oxygen.  Here, about 98% are sent home on it.  That's a huge difference!

3.  He needs to be able to drink from a bottle or breast and show that he can gain weight on that regimen.  This is the one that takes the longest.  He sucks so hard on his pacifier, so I think he'll do well with this.  Before aggressively going after it, though, he needs to be weaned down to low flow oxygen.

Our next big goal is weaning Joshua off the high flow oxygen. Last night he had a few brady episodes (drop in heart rate), so they didn't want to wean any more today.  If he does well overnight, they'll wean him a little more tomorrow. 

Big Josh, Little Gus

Hmmm...not much to say today.  Big Josh (as his Uncle Joseph calls him) or Little Gus (as his Aunt Greta and Grandpa Gus call him) is doing well.  James was there for Joshua's 8:00 PM "cares," the hands-on time done every three hours where he get his diaper changed, temperature, feeding, etc.  That's my second (kangaroo care is first) favorite part of visiting Joshua.  I never thought I'd be so excited to change his diaper, but it is a special time I won't take for granted in the future since I usually only get to do it 2-3 times a day.  The daily weight is done at the 8 PM cares.  Here's the good/bad news tonight. 

Good: His bowels are working perfectly, and he had a nice poopy diaper for James. 
Bad: It was so good that the poop weighed 43 grams, and the weight is done after the diaper change.  So he lost 20 grams tonight, weighing in at 1750 grams or 3 lbs 13.7 ounces. 

I haven't mentioned this for a while now, but I am so thankful for all of the prayers and encouragement we are continuing to get from around the world.  Our journey has been going on for months now, and people are still standing by our side in support.  Thank you all so much!  We are still receiving meals three times a week, which is a huge blessing since I am usually in the NICU all afternoon until either supper time or Jeremiah's bedtime.  It takes a huge load off of me to not have to worry about when/how/what I'll cook for dinner. The past 2 weeks, we have received meals from people in our church who I didn't even know until now.  It amazes me how we are total strangers to them, but they still reach out to us with meals and prayer.  Wow.  Thank you, everyone!

One Month Old Today!

Happy Birthday, Joshua!  It's hard to believe it has been a month since he was born!  Sometimes it feels like a year, to be honest, but I guess looking back, it has gone by quickly.

Right now, he's sleeping so peacefully next to me.  That Lasix works wonders.  His respiratory rate was 25-30 today rather than 60-80 as before.  After 3 hours of kangaroo care, Joshua was game for an amateur photo shoot with me, even tolerating a wardrobe change!  We had fun (well, I did at least). 

Tell me how you really feel, Joshua.

Joshua hitting the high note while singing Handel's Messiah

Tickle, tickle!

Well, it's April 1st.  Did Joshua make it to 4 lbs??????  Drum roll please..........The answer is.....No. Whuh-whaaaaaa (trombone sound).  That pesky Lasix is working too well peeing off his weight.  He's at 1770 g, still 3 lbs 14 oz.

I inadvertantly had a semi-supermom moment today.  We had some fancy cupcakes that were given to us with a meal a couple of nights ago. I ate one (with a little help from Jeremiah who loves to sing his version of "Happy Birthday" every time he sees something resembling cake...muffins, cupcake, etc).  James, who doesn't like sweets (I know, crazy!), didn't want any. I took the two extra cupcakes to the two nurses in Joshua's pod today, thinking they might appreciate it.  At the very last minute, I spontaneously put two and two together and announced they were cakes to celebrate Joshua's birthday.  To truly be impressed with that, you have to realize something.  Even on a good day (i.e. before my brain turned to postpartum mush), thinking of doing creative/crafty/thoughtful things wouldn't come naturally for me like it does for my sisters.  So here I am, patting myself on the back for having a Heidi/Greta moment.  Before I know it, I'll be baking (or likely buying) birthday cupcakes for Joshua's classmates in school.  :)

Yesterday was a rough day for me emotionally, just feeling overwhelmed with everything going on and unorganized in our household.  James, my emotionally stable/logical half, sat down with me and worked out a strategy, a schedule to help me see things clearly, prioritizing things, basically clearing things up for me to view life as more managable.  He also gave me a plan for doing what used to make me so happy and stressfree, being outdoors and working out.  Having a coach/personal trainer for a husband does have its privileges.  I had been trying to convince myself that my time should be devoted 100% to Jeremiah and Joshua in this phase of life, and I'll get back in shape later.  But we realize for my mental well being, I really need that outlet, so that I can be a good mom and wife and functioning human being.  So we were up and at 'em (eventually) this morning, James heading out for a run while Jeremiah and I went on a walk. 

Speaking of that, I'm glad our church has three services.  We were planning on going to the 8:30 service, but someone (ok, it was me--am I the same woman who used to get up at 4:15 AM before work to get in a swim workout?) had a hard time getting out the door for our morning walk, so we decided to go to the 2nd service.  Jeremiah and I were ready to go to the 10:00 service, but someone (ok, James) thought it was 10:30 and didn't get back from his long run until after 10.  So we went to the 11:30 service.  As frazzled as we may seem, in that three hour block I was more productive around the house than I have been in three weeks, so it all worked out.

Today, James and I had our first comic relief that I can remember in the past 3 months.  Unfortunately it was in the middle of church, which made it all the more hilarious to us.  It brought back childhood memories of giggling in church with my sisters, and my mom would give a stern look and squeeze the back of my neck to make me stop, but that would make me laugh even more uncontrollably.  The "forbidden laughter" is the funniest.  The source of the humor today was a big sticker from the nursery that said, "Potty Training In Progress."  Somehow it ended up on my back and then on James' back in a spot where he couldn't reach it, which gathered a little attention from the people behind us.  That was the extent of our April Fool's pranking today.  It was fun to just have a giggling moment together again.