Milestones

Uh-oh, I spoke too soon yesterday.  Joshua lost 10 grams, down to 1765 g or 3 lbs 14 oz.  Just when I was talking up my dad's amazing weight predicting skills... In his defense, though, I think Joshua would have definitely hit 4 lbs by April 1st if he wouldn't have been interfered with.  He was given Lasix today (a diuretic), so he surely peed off the extra weight.  The Lasix was started because he has a mild case of pulmonary edema (fluid in the lungs).  It's not surprising after his viral pneumonia earlier in the week.  They have been unable to wean him from his high flow oxygen.  Every time they bump it down a little, he has to work really hard to breathe, so they turn the settings back up.  He has also had swelling, so those factors warranted a chest x-ray which confirmed the diagnosis.  After 24-48 hours on Lasix, the doctor plans to try weaning the oxygen again. 

Despite all that, as long as he continues on his high flow oxygen, Joshua looks great.  There have been a few minor milestones recently:

1.  Last week, he went up a size in diapers.

2. Yesterday he graduated to a bigger blood pressure cuff.  The smallest sized cuff (which he has been using since birth) popped right off his arm when it was inflated.  You should see his pipes! 

3.  Today he graduated to the big boy binky, a.k.a. the newborn sized pacifier rather than the preemie pacifier (to get him ready for breastfeeding). 

4.  And the biggest of all... today I was able to feed him drops of milk into his mouth while he sucked on his pacifier.  He loved it.  One of the hardest things for a preemie to catch on to is sucking, swallowing, and breathing all at the same time.  He passed that first test today.  The next test was putting a bottle nipple in his mouth and dropping milk through it, but that didn't work so well.  He could suck really well, but it came out too fast for him to swallow it, so it just spilled out of his mouth.   There's room for improvement.  I'm just excited to see him start down that road leading away from the NG tube and toward actual breastfeeding. 

5. Oh wait, I guess this was the biggest of all:  No PICC line in his ankle!  100% of Joshua's nutrition is now breast milk and calorie supplementation (a special formula they add to the milk to get him beefed up a little).  But more importantly, that also means he can wear footie pajamas.  :)  He has had one leg out when he wears those cute little outfits, kind of looking like Flo Jo from way back in the day, only without the long nails.  Remember her one legged spandex tights?  I guess I'm dating myself.   

We still have tomorrow's weigh-in to make my dad's prediction come true (since it will still be April 1st).  Don't hold your breath, though, because he will get two more doses of Lasix before then.  I know, it is so not fair.

Closing In On Four Pounds

I have to tell ya...my dad may be right again.  He told me he predicts Joshua will be 4 lbs by April 1st.  I said no way.  Well...tonight he weighs 1775 g or 3 lbs 14.6 oz.  He has one more day to gain less than an ounce and a half, and he's on track to do just that.  My dad also predicted a birth weight of 2 lbs 5 oz, despite the ultrasound prediction of 2 lbs 0 oz.  Pretty impressive.  If my memory is correct, I think he even guessed Jeremiah's birth weight right on at 8 lbs 4 oz.  Go Gus!

Tomorrow when we go in to see Joshua, we should see his whole left foot, free of the catheter.  They plan to pull the PICC line out late tonight and stop the TPN (total parenteral nutrition, feeding through his vein).  That's a big milestone.  He is up to 24 mL of breast milk every 3 hours, and he's doing well on that.  They are also adding some nutrition to the milk to increase the calories.  The next step is to start "nippling," or feeding through a bottle, and then work on breastfeeding.  We're making good progress! 

Tonight I boxed up all my maternity clothes and organized my regular clothes.  It was a little sad, mourning the pregnancy that ended too soon.  I didn't even get a chance to wear most of those clothes.  With Jeremiah, I got such a kick out of showing off my baby bump.  I loved being pregnant.  It's interesting how different pregnancies can be.  Several nurses have asked me about my first pregnancy, and they are always shocked Jeremiah was overdue when they look at Joshua. 

Last week I overheard two pregnant women talking, and they were whining about how they are so miserable being fat and pregnant, and one said, "I just can't wait to get this baby out!"  I know she didn't mean she seriously wanted a preemie, but I felt a twinge of jealousy.  I had to walk away because I was close to telling her to be thankful that she has her baby with her 24/7, he's healthy and developing normally, and her family isn't split up commuting to the NICU every day.  Then I got over it. I need to quit being so overly sensitive about things.  It's probably more normal than not for a pregnant woman to complain, and I do remember carrying nearly 50 extra pounds wasn't all that comfortable at the end of the pregnancy.  I'm sure I have also been guilty of inadvertantly being insensitive to people around me without realizing what circumstances they are going through.

Quick Update

Nothing new today.  Joshua has been looking good.  He's up to 1730 grams tonight, or 3 lbs 13 oz.  We're closing in on 4 lbs!  They recalculated his nutrition requirements, and they want to wait until tomorrow to pull the PICC line.  He's tolerating 21 mL every 3 hours very well. 

I'm feeling pretty sick right now because I came down with a case of mastitis (infection in my breast).  Not so fun.  Pain, fever and chills, yadda yadda yadda.  I'm hoping once the antibiotics kick in, I'll feel better.  I'm not in the mood to write anything, so I'll cut this short.  Good night!    

Count Your Many Blessings

I guess it's not "today" anymore, but I'll speak like it's still the 28th. I'm staying overnight in Joshua's room because I was here tonight, and I'm only able to see him in the morning tomorrow, so it's easier to just stay here than drive the 35 minutes each way home and back.

We had a little scare today, actually James did since he was the one here for it.  The oxygen Joshua gets is humidified, and condensation can form in the tube.  He took a breath expecting air and inhaled water instead.  That caused him to panic, kind of like me on my first SCUBA dive when I took my mask off and freaked out when I inhaled water, so I bolted for the surface...very uncool of me.  Anyway, I think I understand how he felt a little bit.  When Joshua freaked out, his heart rate dropped alarmingly low, and he stopped breathing, so his sats (percentage of oxygen) dropped from 98% to 70%.  The alarms went off and people ran into the room to resuscitate him, and things normalized after a couple of scary minutes.  Prior to that, he was needing to work harder to breathe, so they had to turn up his oxygen.  We were hoping they could wean him down to low flow oxygen, but no so today.  Now he's looking really good, sleeping peacefully with his suped up high flow oxygen. 

Tonight he had his first weight loss, down 10 grams.  Hmmmmm...just a wild guess here, but it could be due to the FOUR poops he had today.  He was a machine!  So proud of him!  :)  He's still at 3 lbs 11 oz. 

There is a NICU Social every Wed night, and I went for the first time tonight.  I knew there would be food there, and I was hungry, so I thought I'd sneak in and out.  Well, it turns out it was a support group type thing lead by a social worker, where we all sit down in a circle and go around the room and talk about ourselves and any issues we are having.  So much for staying under the radar and doing a "grab and go" with the free food.  I found it very interesting, though.  The take home lesson for me was...we have it pretty easy compared to other NICU families.  I thought a month in the hospital was a long time, but every other family there (5 families besides me) has been here several weeks longer, as early as Jan 9th.  One woman was on bedrest for 7 months, the last 7 weeks in the hospital, had a baby at 29 weeks, 2 lbs 3 oz.  They (like us) were told to plan on going home around the due date, but they are now 2 weeks past their due date, and they still can't get their little girl to feed on her own, so they are stuck here.  Another couple, the one with a baby born on Jan 9th, has had to endure 3 surgeries, and the baby has hydrops (very serious) and a rare genetic syndrome.  Another family lives 1.5 hrs away, and they only see their other kids on weekends.  No I can't complain about anything.  Another thing I feel fortunate for is not having to juggle work with all this.  One mom in the group was telling about how hard it is to work full time while balancing life with a baby in the NICU.  Her husband was stressed out because it's the end of the month, and they are out of money, and they can't afford gas to get to the hospital.  Oh the things we take for granted! 

My nurse tonight had a baby born at 34 weeks who spent 3 weeks in the NICU.  Her hospital bill was $158,000 for the hospital stay alone, not including the doctors, xrays or labs, and she's still fighting her insurance company 6 months later.  She knew of a baby born at 24 weeks who had hospital bills for $980,000 for his NICU stay.  It's depressing even thinking of it, so I'm glad we don't have to worry about that with Tricare. 

Bottom line...we are so thankful that we have it so "easy" compared to many other families.  A couple of sayings come to mind that we can all take to heart:
1.  Count your many blessings, name them one by one.
2.   Count your blessings and your problems.  If your problems outnumber your blessings, count again.       

Friends Made Through Challenges

I forgot to mention a little milestone yesterday.  Joshua reached 34 weeks gestational age.  We're getting closer to that due date (target NICU discharge date)!  He's getting bigger.  James just called in and found out his weight tonight is 3 lbs 11 oz (1675 g).  He has gained 60 grams since last night, really packing it on.  Another biggie is they stopped his antibiotics today.  Word on the street is if he continues to tolerate the increased feeds, they may remove his PICC line on Thursday.  Oh, and they took out the IV from his forehead.  Surprisingly, my initial reaction was not relief but disappointment because I know they'll have to start another IV to replace it before the PICC line is out.  :(  I know it's not that big of a deal, but I hate to see him go through any of those painful procedures, as minor as they may be.

I just want to give a shout out to my new friend Amanda (Berry) Robertson.  We are both from Cambridge, MN, and I heard about her because her family goes to my sister Heidi's church.  We were on bedrest at the same time, and she had her baby less than a week before I did.  Her little Melia was born at 26 and 4/7 weeks.  I absolutely love following Amanda's blog (if the link doesn't work, go to caringbridge.org and search babygirlrobertson).  Our situations are unique, but there are so many similarities between what we are going through, right down to their weights (Melia is 3 lbs 9 oz today).  It's so amazing to see how God is working in all of our lives through these little miracle babies.  We have never met in person before, but I feel like we have a special bond going through this together.  If you have extra prayers in your heart, please keep the Robertson family in mind. 
    

Our Relaxed, Pink, Happy Baby

Aaaah...I love these pictures.  James' cousin Shauna is an amazing photographer.  She is so sweet for coming to the NICU to capture Joshua in all his tiny cuteness.  On the first picture, if you look closely, you can tell Joshua is smiling with his eyes.  Hee hee.  That one just melted my heart when I saw it, and it brought tears to my eyes.  The second picture captures his little fingers so perfectly.  I love it!  Thankfully, his hand grabs the full attention of the picture because I realize now I should have gotten a manicure before these pictures.  But then again, my jagged, chewed up hangnails perfectly capture our nail biting experience.  :)   

LET'S HEAR IT FOR SHAUNA BETH PHOTOGRAPHY!  YAY!

Joshua is looking so incredible today.  Oh boy, that blood transfusion and extra oxygen made a world of difference in how he looks and acts.  After seeing him struggling to breathe yesterday, it's such a relief to see him today all relaxed and content...and pink!  He was so pale before.  He had a great day.  The blood cultures are negative so far, and the medical team is more and more convinced his diagnosis is a viral pneumonia.  Not a lot to do for treatment of that except give a little help with the oxygen.  If the cultures are negative tomorrow, they plan to stop the antibiotics once it has been 48 hours.  A mild annoyance is that he is in isolation, so anyone who enters his room has to wear a gown, mask, and gloves, including us.  I can't complain, though, because I know if Joshua's neighbor had a viral infection, I'd want them all to be gowned and gloved, too.  Those babies are all so fragile. 

Tonight, Joshua weighed in at 1615 grams or 3 lbs 9 oz.  That's a huge gain, up 60 grams from last night.  Granted, the weight last night was taken after a 45 g poop, and he hasn't had one today, so that may explain a little of the weight difference.  But we don't need to overanalyze it.  OverANALize it.  Get it?  I am SO cracking myself up right now!  Sorry, Mom.  Being under stress and sleep deprived, I'm not in my right mind, so I can't be held responsible for my potty humor. 

I just realized Joshua weighs the same now as his cousin Callie when she was born over 16 years ago nearly full term with trisomy 18.  Callie was such a little thing, and now she's so big.  When I was pregnant, one of my goals was to try to "beat" Callie's birth weight.  We were 3.5 weeks short on that goal, but I still consider it a small milestone.

Two Steps Forward, One Step Back

My goodness, you'd think by now I'd learn not to relax and let my guard down thinking we're on the home stretch!  Poor Joshua had a rough morning. 

The Short Story:  He has severe anemia requiring a blood transfusion and pneumonia (possible sepsis) requiring high flow oxygen supplementation.  He's doing much better now, back on vanc and gent antibiotics, and once again the doctors are trying to figure out exactly what is going on.

The Long Story:
I went in at 6:00 to get a couple of hours of kangaroo care before church today.  Joshua was tachypneic (breathing quickly, a sign of various bad things such as anemia, infection, and more), but this has been gradually worsening over several days, so nothing new.  After an hour or two sleeping on my chest, he started crying inconsolably.  I called the nurse, and we put him back in his incubator.  He started having difficulty breathing, working really hard to breath, using muscles in his chest and abdomen (retractions) to try to get more air in, and he seemed panicky to me, the way I would feel if I couldn't breathe.  He was also very pale and had cyanosis (blue) around his lips, which is new for him, and he was tachycardic (fast heart rate). The nurse practitioner came in and started him on high flow oxygen (to force the air into his lungs to allow him to breathe more easily), and he became a little more comfortable.  The doctor came soon after, and they both thought he had RSV (a respiratory virus that can be very serious in a preemie).  The stat chest x-ray showed infiltrates, which signifies pneumonia, which fits with RSV.  I sat on pins and needles for most of the next hour until the RSV and influenza tests came back negative, thank goodness. 

The CBC results showed anemia (hematocrit of 25%, which is pretty low), which would explain the pale color and cyanosis as well as tachypnea and tachycardia.  He fit criteria to require a blood transfusion, no biggie since transfusions are so safe these days.  James orders them all the time in surgery, so he wasn't worked up about the rare but potential side effects.  I signed the consent form, and it said the chances of HIV, hepatitis, or another infection from a transfusion is about one in a million.  Ordinarily I wouldn't have batted an eyelash at that statistic, and logically I know it's completely safe, but this is the kiddo who repeatedly proves he will be in the "one in a something" rare minority.  I got nervous for a second and asked if James and I could be tested to donate our blood directly to him, but that would delay his transfusion for three days, and we didn't have that time.  He's is getting the transfusion over several hours now. 

Just when he was starting to make great strides in his feedings (up to 13 mL q 3 hours and tolerating it very well), now he has to be NPO (nothing by mouth) for 24 hours due to the transfusion.  There is an increased risk of NEC with transfusions, not a risk Joshua needs right now.  I thought we were past that, but NEC won't stop haunting us.

They started him on antibiotics, vanc and gent again, because they aren't sure exactly what's causing the infection.  If it's not viral, it could be a bacterial pneumonia or PICC line infection.  Once again we'll have to wait 48 hours for the blood and urine culture results.  They needed another line for the transfusion, so they started a peripheral IV in his scalp.  When I take care of babies, I counsel the parents not to worry about an IV in their head.  It looks freaky, but it's harmless, less painful, less likely to be pulled out by the baby, etc.  Well, forget that when it's my own child!  I do NOT like seeing an IV sticking out of his beautiful forehead!  This whole experience is giving me a greater empathy for my patients, but I think my empathy was just fine without having to learn these lessons the hard way, thank you very much.  Whah whah, I know I'm whining. 

In the middle of all this chaos, what does Joshua do?  He goes and yanks out his NG tube (yes it was taped down pretty securely).  He's a feisty one, that guy.  As if IV starts, blood draws and a urinary catheter isn't enough, let's make it so they have to shove the tube up his nose again.  Gee whiz.  I wonder if he was thinking, "That's all ya got for me?  Well, BRING IT ON!"  At least he didn't have that lethargy he had last time.  He has been alert and active throughout all of this.

Oh, one more thing...if everything comes back negative, they will do an echocardiogram to rule out problems with his heart (it was enlarged on x-ray).  I'd rather not even think about that right now, so I'm not going to elaborate on it until we cross that bridge.

Well, that's the gist of it.  My summary doesn't adequately portray the unknown, scary aspect that we were feeling over several hours while waiting for test results.  Joshua was looking much better when I left the NICU a couple hours ago, so that's what really matters.  I think I'll invest in Clairol stock since I'm going to need a truckload of hair dye to cover up all my new gray hairs!


Thank you for keeping us in your prayers!

Mommy Baby Bonding and Brownie Bribery

Tonight I am ecstatic after spending time with Joshua.  Earlier this morning, James went in to do some kangaroo care, and Joshua didn't tolerate it so well.  He has had nasal congestion and blood clots suctioned from his nose (probably from trauma when the NG tube was placed), and his sats (oxygen level) were dropping.  He also has anemia (common in preemies), so he has tachypnea (fast breathing rate).  He was looking better by the time I got to the NICU this afternoon, so I got to hold him skin on skin.  After a couple of hours, he woke up hungry.  It was the coolest thing ever because he started nuzzling on me.  He couldn't latch on yet, but it was a great start down the path to breastfeeding.  For several minutes, I felt like a "normal" mom with a "normal" newborn baby.  The bond between a mother and baby really is miraculous.  I'm so excited for this step forward.  Aaaaaaaaaahhh....

Speaking of stepping forward...get this.  I was excited after my walk last night, and I wanted to do more today.  I thought I can't give up on Jeremiah riding in the stroller, but I don't know what to do.  Well, this came to me all of a sudden.  Jeremiah pulled a chair up to the "treats" cupboard, and he climbed up and pulled out a Fiber One brownie and asked if he could eat it.  I said no, but then just for kicks I said, "you can eat it if you sit in your stroller while we go for a walk."  Well, this kiddo who has stubbornly refused the stroller for weeks suddenly turned and walked downstairs, grabbed his shoes and walked to the door and waited for me.  I put our shoes on and opened the door, and he went straight to the jog stroller and climbed in, ready to go for a walk.  Just then, James came home, so we went on a family walk for the first time in months, just like old times, while Jeremiah enjoyed his brownie.  We walked 2 miles, and it felt great.  Bottom line....I found a new parenting technique:  bribery!  Works like a charm!  Back when I was a perfect parent with all the answers, in other words before I had children, I said I would never use bribery.  But hey, desperate times call for desperate measures, and I'll take whatever works.  Feeling a little guilty, I told James, "here we're trying to have Jeremiah learn to appreciate a healthy lifestyle, and I'm feeding him sweets...."  James immediately replied, "hey, he needs to learn that nutrition is half the battle in an Ironman."  Works for me!  I'm going to stock up on brownies now, just to make sure Jeremiah's glycogen stores are full for our upcoming workouts.  :)

James just called the NICU, and Joshua is doing well tonight.  He gained another ounce, up to 3 lbs 6.5 oz or 1540 g.

The Most Beautful Baby (Well, To Me At Least)

Not too much to report tonight, which is fun to say.  Joshua gained another 25 grams, up to 1515 g or 3 lbs 5.5 oz.  His feedings are up to 9 mL every 3 hours now, and he's tolerating it well.  He is getting more alert and more cuddly looking as he's starting to look a little chubbier.  The doctor said as a rough estimate, they typically like to see preemies gain 150 grams a week, and 450 grams is a pound, so the fact that he gained one pound in three weeks means he's right on track with what they expect.  Not too shabby when he didn't eat for a week and relied on TPN (nutrition through the PICC line).

Today one of the neonatologists (the one who counseled us with bad statistics back at 24 weeks) stopped me in the hall and said he was just talking about Joshua.  He was telling the nurses in the other pod to go look at the Bales baby because he is the cutest baby in the whole NICU.  Even though he hasn't been Joshua's doctor, he goes in to peek at him every now and then just to see how he's doing since he remembers us and knows our story.  He said Joshua is always so alert, playing with his hands, and he thinks Joshua is so adorable.  He was just beaming when he was telling me this.  Of course I was beaming tenfold.  He probably tells every mom her baby is the cutest, but I don't care.  He knows exactly how to win over this mama's heart.  Now that's good bedside manner! 

{Reminds me of another story.  After Jeremiah was born, a woman from church came up to us and oohed and aahed over Jeremiah and said, "He is the most beautiful baby I have ever seen!"  Of course that almost made me burst my buttons with pride.  After spending the next week gloating over my baby being the most beautiful, I saw another woman had a baby in church the following Sunday.  Much to my dismay, I overheard the same lady tell her, "He is the most beautiful baby I have ever seen!"  Ha ha, James and I still laugh at that.  Just when you start to get a little full of yourself, there's always someone or something that comes along to burst your bubble and keep you humble.}

Tonight I had my first official "workout" in months, if you could call it that.  After Jeremiah went to bed, I went on a brisk 1.5 mile walk.  Well, for me in my current condition it was brisk anyway. It was so nice to get out and move.  It was a beautiful evening, and I always love being out in my neighborhood, with the fresh air, smell of pine trees and view of Pikes Peak.  I hate to even admit it, but that mile and a half was enough for me.  Somehow the hills got a lot bigger since I last ran that route.  Now my legs feel like I just finished a half marathon.  I have a long road ahead of me if I plan to get back in shape.  Not Ironman shape since racing/training isn't a priority for me now, but 10K shape would be nice.  It's going to take baby steps.  I don't have any weight to lose, but I have a lot of fitness and muscle to gain.  Jeremiah is in a phase (I hope it's just a phase) where he refuses to get into the jog stroller, so that will make things a little more difficult.  This time around, I may have to figure out a way to get creative since the jog stroller was my secret weapon to bouncing back after Jeremiah was born.  For now working out is definitely not even near the top of my priority list, but it would do me good to have the same level of energy I had when I was in shape. 

That's enough rambling for tonight.  Until next time....
Karrn

Workin' It For the Camera

Hi!  The big news tonight:  Joshua has officially gained one whole pound!  Tonight he was up to 3 lbs 5 oz (1490 g).  He is tolerating his feedings well, and he is up to 6 mL every 3 hours.  His belly is nice and soft and nontender, and he's looking great.  There is a fine line between trying to advance the feeds quickly in order to get the PICC line out, which is how he's getting most of his nutrition and is a potential source of infection, and advancing slowly enough to not overwhelm his gut.  Since he has been doing so well the last few days, tonight the dr just wrote an order to advance an additional 1 mL per feed every 9 hours instead of every 12 hours.  We'll see how he does with that.  Yesterday I forgot to mention a milestone, completion of antibiotics.  He finished his 10 day course.  It's good to have that behind us. 

James' cousin, Shauna, is an amazing photographer.  Here's her website:  shaunabethphotography.com. She came to visit Joshua today and did a photo shoot for us.  Ya know, I tried to prep Joshua for his big modeling debut. We worked on smiling and everything.  I used all my expertise gained from that one season (ok, maybe two, but that's all I'm admitting to) when I had an addiction to America's Next Top Model... I coached him on the smeyes (smiling with just your eyes), turning the right way to make the light work for him, knowing his best angle, looking fierce, all that good stuff.  He even showed me a great Blue Steel that would put Derek Zoolander to shame.  That was last night.  Today, wuddya know...he slept the whole time.  At one point, I tried to gently nudge him awake, and he was like, "Aw Mom, can't you see I'm trying to grow here, and I do it best asleep!?   Enough already!"  Ok, I can take a hint.  Oh, of course, once Shauna put the camera away, he was suddenly wide awake and alert.  Funny how that works.  He's already trying to show me he is going to have a mind of his own.   Fine by me...I figure it'll keep things interesting.  I'm excited to see how the pictures will turn out (and I'll definitely post them when they're ready).   

That's about it for now.  Thanks for following along.  Good night!

"He's Going To Be a Good Baby"

Things are looking good with Joshua.  He is actually looking a little chubby in his cheeks and chin, and he weighs a whopping 3 lb 3.5 oz (1460 g) tonight.  We had fun together today.  After kangaroo care for over 3 hours (have I ever mentioned how much we love that?) and a good breastmilk feed (4 mL through the NG tube), he looked so content.  He was awake and just looking at me.  In a period of about 10 minutes, he just gave me the googly eyes and smiled about 10-20 times.  Ok, I know babies don't smile this early, and he must have had a big case of gas or something, but to me, he was smiling.  If I had my camera with me, I'd have snapped a bunch of pictures to prove it.  And maybe those googly eyes didn't really have a lot of thought behind them, but I could tell he was thinking, "I love you Mommy!"  "Aaaah, you're the BEST, Mommy!"  It was a fun bonding moment for us.  I caught a glimpse into the future, and I could tell he's going to be a good baby and a sweet boy.  :) 

{A little story behind that:  When Jeremiah was about 2 days old, I told my mom and sister, "I can tell he's going to be a good baby..." This was either right before or during a spell where he cried for hours, and none of us could get him to settle down.  I guess I was a little blinded to that, because I was sure he'd be a "good baby" (whatever that is).  They keep reminding me about the irony of it, how he was inconsolable.  But hey, I was right; he was a great baby!}

Here's a little tidbit from my Moms and Beyond group.  We are studying Jonah, a study by Priscilla Shirer.  In this week's DVD, she started out by saying if you are going through a rough time, know that it is all part of God's master plan for you, and He has a reason for it.  Just remember.  The Enemy would never cause you to go through a situation that will draw you nearer to God and get you on your knees praying, growing closer to the Lord.  Something like that...it's paraphrased.  I thought it was a good point to think about while going through a trial in life.  I know for us, hopefully being on the tail end of this trial, we can look back and see how God has worked in our lives over the past couple of months, and we have matured through the experience and grown closer to God.  That being said, I think we've matured enough, so we're definitely open to the possibility of being done with this lesson!  :) 

Thank you all for continuing to cheer us on through this journey.  We appreciate your thoughts and prayers! 

Spreading Our Wings

Well, we are on our own now.  My parents left this morning, and this time they took their suitcases with them, so that means they have officially moved out.  I have been sad today, wondering how hard it is going to be juggling everything without them here.  But then I realized it's time to put on the big girl panties...cut the apron strings...spread our wings and fly...however you want to say it, we need to adjust to our new normal and settle in as a family. 

My melancholy feelings started when I called to make a dental appointment for a procedure that I canceled when I went on bedrest.  I actually got stressed out looking at the calendar.  Yes, just a simple appointment, but it got my mind spinning out of control.  How was I going to schedule that appointment when I wasn't sure when Joshua would be home?  How am I going to handle two kids at home?  Ok, all you friends with 3, 4, 5 or 10 kids, I know you are either rolling your eyes or chuckling at me because having only 2 kids would easy for you now.  Will I even be able to take Joshua out and about, or will we be housebound for months?  And my mom and dad won't be here!  On and on my thoughts took over with various scenarios that I might have to face, most of them normal everyday things that all parents go through.  I have always been able to handle a challenge, but raising two kids, one being a preemie, felt worlds apart from the typical sports or academic challenges I have thrived on in the past.  I know, logically, I have nothing to worry about, and it will all work out.  I always questioned whether or not I was making the right decisions with Jeremiah, and I eventually figured out that there are usually multiple right answers.  As long as I love him and go with my gut instincts, it's hard to mess up too badly.  The same goes for Joshua.  Since he's not even home yet, I'll try not to worry about future bridges we'll have to cross until we reach them.  And yes, we can make it on our own.

Joshua is continuing to do well.  They increased his feedings to 3 ml every 3 hours, and he seems to be tolerating it well.  They plan to increase the feedings much more slowly this time.  He really is growing!  Tonight he weighs 3 lbs, 2 oz (1415 g).  Yay, he's three pounds and change now!  I was pretty sure last night's weight was a mistake when the nurse told me he hadn't gained or lost any weight.  He had been growing 20-30 grams a day (almost an ounce), and he has never not grown, so it sounded sketchy to me.  If her weight was correct last night, he gained 3 oz in one day, which I highly doubt is accurate.  But regardless, he is growing!  And I really did see a double chin.  Maybe we have a future sumo wrestler after all.

Stronger

Joshua had so much fun today.  He got to snuggle with Dad for 2 hours in the morning and with Mom for 2 hours in the afternoon.  He just loves that!  Almost as much as we do!  They say that extra touch helps him grow, and I believe it.  I was so excited because I think I saw a double chin.  He's starting to fatten up a little, and I love it!  I just called in, and he didn't gain or lose any weight since yesterday, so he's still hanging out in the "2 lb and change" range, 2 lb 15 oz.  Maybe tomorrow he'll hit 3 lbs.

I haven't been feeling overwhelmed since last week, but tonight when I got in the car, the song playing on the radio hit me with such a great message of encouragement.  It's "Stronger" by Mandisa (from American Idol).  Check out the video or read the lyrics below.  If you ever go through a tough time, keep it in mind. 

Stronger

Hey, heard you were up all night
Thinking about how your world ain't right
And you wonder if things will ever get better
And you're asking why is it always raining on you
When all you want is just a little good news
Instead of standing there stuck out in the weather

Oh, don't hang your head
It's gonna end
God's right there
Even if it's hard to see Him
I promise you that He still cares

When the waves are taking you under
Hold on just a little bit longer
He knows that this is gonna make you stronger, stronger
The pain ain't gonna last forever
And things can only get better
Believe me
This is gonna make you stronger
Gonna make you stronger, stronger, stronger
Believe me, this is gonna make you ...

Try and do the best you can
Hold on and let Him hold your hand
And go on and fall into the arms of Jesus
Oh, lift your head it's gonna end
God's right there
Even when you just can't feel Him
I promise you that He still cares

'Cause if He started this work in your life
He will be faithful to complete it
If only you believe it
He knows how much it hurts
And I'm sure that He's gonna help you get through this
When the waves are taking you under
Hold on just a little bit longer
He knows that this is gonna make you stronger, stronger
The pain ain't gonna last forever
In time it's gonna get better
Believe me
This is gonna make you stronger

Jeremiah Meets Baby Joshua

Hi!  Another nice, uneventful day for Joshua today.  He's looking good, and he continues to tolerate 2 ml of breastmilk through his NG tube every 4 hours.  Tonight he gained another 35 grams, so he's at 1325 g or 2 lbs 15 oz.  Jeremiah came to visit him for the first time.  He was pretty excited to "SEE BABY JOSHUA!  HOSPITAL!"  Now he can visualize where we spend all our time when we aren't with him.  Of course his attention span was typical of a two year old, and the novelty wore off within about five minutes, but it was still a fun adventure for him. 

Hmmmmm...THIS is what everyone's all excited about?!?!?!?!?

Grandma Gus gives Jeremiah another look at his baby brother.

Yep, I'm the Big Brother!  And I made sure my favorite friend, Po Bear got to come meet Joshua, too!

 

Here are two videos. The second one is a little long. For a shorter version, start it at 1:40 into the video.

 

 

Rejoice!

Joshua is looking great today.  We got to snuggle for 3 hours, and he slept the whole time.  He hasn't had any bradycardia/apnea episodes for more than two days now, and his abdomen is nice and soft, nontender, and nondistended.  They restarted his feeds today at 2 mL every 4 hours, and he has been tolerating it well.  Tonight he gained 35 grams, up to 1295 g, or 2 lbs 14 oz.  We're getting close to three pounds!  We had a new nurse today fresh out of college, and she said the training program is pretty rigorous.  They won't let her care for the really sick babies without her preceptor there, but she can be alone with the stable babies like Joshua.  You could look at that in a negative way that we didn't have the most experienced nurse assigned to Joshua.  I, however, prefer to view it as a positive, that he is considered easy again.  :)       

Right after I posted my blog last night, I read my friend Wendy's blog ( Worship 24-7 ), and she posted the perfect scripture for what has been on my mind lately, Philippians 4:4-7 (especially verses 6-7).

 ⁴ Rejoice in the Lord always. I will say it again: Rejoice! ⁵ Let your gentleness be evident to all. The Lord is near. ⁶ Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. ⁷ And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

I've mentioned some miracles we have experienced with Joshua so far, and one miracle I may not have mentioned was the peace I have felt through this whole experience.  It certainly has surpassed my understanding!  Granted, that level of peace has varied, with more during the pregnancy and a little less a few days ago when we were faced with a setback in Joshua's health.  I don't know exactly how to explain it, but I feel like God has really worked in our lives and has shown himself to us.  When everything is smooth sailing, it's easy to sit back and forget about rejoicing in the Lord or turning your life over to Him.  I look back at all the times I coasted through life relying on myself instead of turning everything over to God, and I see a lot of  missed opportunities.  I'm so grateful that God is always there for us, carrying us when we need it...and even when we think we don't.

A Look Back At Joshua Beating the Odds

Not too much to report today.  Joshua is looking as good as ever.  I got to hold him for 3 hours today, and he slept the whole time while I slept most of it.  So nice!  Tomorrow will be day five of no food through his GI system (just TPN, total parenteral nutrition, through his catheter), so his bowel is nice and rested.  Tomorrow, if his abdomen looks soft and nontender, the plan is to start tiny "trophic" feeds at 1 mL every 4 hours to see if we can get things moving a little.  The quicker we can get him up to speed with the breast milk, the sooner we can get rid of that PICC line in his foot.  Tonight he gained another 20 grams, now up to 1260 g, which is still 2 lbs 12 oz.

I was thinking of all the miracles God has shown us through Joshua.  Of course the most obvious is keeping him in utero an extra 6 weeks when we thought he'd be born at 24 weeks.  Then there was the "almost definite" chromosomal abnormality based on the placenta that looked like it had a chromosome problem and lack of nasal bone on ultrasound (which is seen in only 1% of normal babies).  Those ended up being normal. 

One more thing I never went into specifics about is the positive ACHE and AFP found on amniocentesis.  At that point I couldn't take much more, so I just said "it must be a false positive."  The positive ACHE and AFP means there's a 97% chance of a neural tube defect (like spina bifida) or ventral defect (where the abdominal wall doesn't form correctly, so the organs pooch out or even hang all the way out of the abdomen).  The false positive rate is only 3% (in other words, only 3% of normal babies have these findings).  The reason we didn't take a lot of stock in it was because the abdominal wall and spine looked fine on ultrasound, so I had faith we fell in the 3% false positive rate.  Are you catching where I'm going here?  Joshua really needs to play the lottery the way he likes to fall in the 1-3% zone! 

Here's another example of how Joshua fell into the 1%:  I mentioned before about my placenta, how after delivery, the dr noticed I had what's called a velamentous cord insertion.  That's where the umbilical cord attaches to the edge of the placenta and travels through the membranes (and hemorrhaged area, in Joshua's case) to get to the baby instead of attaching directly to the middle of the placenta where it can get a clear path to the baby. This occurs in only 1% of pregnancies.  What I didn't mention before is how serious this could have been.  When the cord attaches to the edge like that, the vessels are more prone to rupture in labor, which can cause the baby to be stillborn. If this is found during pregnancy, a c-section is usually warranted to avoid this risk of stillbirth. The dr also told me if my membranes had ruptured ("broke my water") during my labor, there would have been a high risk of stillbirth. Thankfully, the membranes remained intact until Joshua started to come out, and she broke my water for me at the very last second. At the time, we had no idea Joshua was facing these risks.  Yes, God has been cradling Joshua in His strong arms this whole time.

And the Diagnosis Is...

The GOOD NEWS:  Joshua is looking so much better today.  Since this all started three days ago, he has steadily improved.  He's so alert and seems happy, and his color is improving.  He did not have any bradycardia or apnea episodes for over 24 hours.  Tonight he weighs 2 lb 12 oz (1240 grams).  So even though he's only getting nutrition through his PICC line, he's growing well. 

The BAD NEWS:  He now has an official diagnosis:  NEC.  Yes, it's what we didn't want, BUT it's subclinical, or mild NEC, so it's supposedly not that big of a deal.  He'll get another x-ray tomorrow since his tummy still seems to hurt and is a little tense (but improved). His cultures all came back negative, so the theory of an infected PICC line is out the window.  In case there was a false negative test, they are continuing amp and gent (antibiotics) for at least 7 days to cover sepsis and NEC.  It's not surprising since he had so many weeks in utero without blood to his gut because his brain got preferential treatment and got most of the blood flow.  They are going to continue holding the breastmilk feeds for 5 days and re-evaluate. 

Meanwhile...I'm a milking machine, even though he can't use it yet.  My freezer is overflowing, and Joshua's nurse told me they probably won't be needing anymore milk at the hospital.  Last night I tried going the whole night without pumping, and it was heavenly.  I slept like a baby...until I woke up in pain at 7:00.  Then I pumped 14 oz!  That's a new record.  I had to stop and empty the bottles in the middle so they wouldn't overflow.  Much better than the 2-3 oz I'd pump with Jeremiah.  I'd say that's brag worthy!  :)

One thing I've learned many times in life is don't wallow in your self pity because there is always someone out there who has it worse off than you.  Today I was talking to another mom I met in the Ronald McDonald room at the hospital.  Her son was born in mid January, full term, and he had to have major surgery when he was 2 days old, removing part of his intestine and reattaching his pancreas.  He has been in the NICU since then, and he has several more weeks to go before he'll be discharged.  She has 3 other kids at home, and they live two hours away!  Her husband works full time, so her mother in law is taking care of the other kids while she is staying at the Ronald McDonald house near the hospital or staying in her son's room.  On weekends, her husband brings the kids to visit.  I guess my daily 35 min drive each way isn't anything to complain about!

I played dress up with Joshua today and took some pics.  Here are a few of my favorites.

More Pictures of Joshua, 13 Days Old

Here are some pics I took today with some fun hats.  For now, it's as much as I dare dress him with all the lines/wires/tubes.  The first hat is from my friend Steph, and the second one was made by a volunteer at the hospital.  My friend Erin gave Joshua the stuffed lamb.  If I can be on the ball, I plan to take a picture of Joshua with it every month for at least the first year to watch him grow in comparison.  He'll be two weeks old tomorrow, so if he's feeling up to it, I'll try again...maybe even with clothes on (if I can swing it).



If you can imagine Joshua with an extra 5.5 lbs on him, you can kind of see the resemblance to Jeremiah when he was born (below).

I just talked to Joshua's nurse, and she said he is doing well, and she was able to wean his oxygen down a little.  His weight tonight increased by 20 grams up to 1220 g or 2 lb 11 oz.  :)



Our Little Rebel To the Medical World

Joshua continues to improve.  He doesn't look so sick today.  He had bradycardia (heart slowing) episodes every hour throughout the night, but the apnea (breath holding) wasn't so bad.  His cultures continue to show no growth, but true bacteremia (bacteria in the blood)/sepsis should show up on cultures by now since it has been over 48 hours.  I was talking with the neonatologist this morning while she was rounding, and she said "your little Joshua isn't behaving very well for us!"  I cringed and thought oh no, what now?  Then she went on to tell me how he isn't giving them a clear, cut and dry diagnosis, so he is confusing the whole team.  I had to bite my tongue to keep from chuckling a little.  If she only knew how every MFM dr was so confused during the last 6+ weeks of my pregnancy!  I think he just thoroughly enjoys baffling the medical community! 

Today the doctor is thinking maybe it's primarily a mechanical gut issue where things just aren't moving so well.  While he has some symptoms of NEC, she isn't calling it that because he looks so good clinically.  Plus, his abdominal x-ray is normal today, and his abdomen isn't as distended or tender as it was yesterday.  They will continue to treat for sepsis with the antibiotics and continue to treat a GI source with bowel rest.  If things continue to look better tomorrow, they'll plan to restart the trophic feeds, meaning back down to 1cc, and increase it more slowly than they did before. 

He is off the high flow oxygen (which forces air into the lungs through the nasal cannula), and he's back on low flow (which means his oxygenation is improving), so they no longer need to decompress the stomach.  When air is forced into the lungs, it also gets forced into the stomach, so the OG (mouth to stomach) tube sucked the extra air out.  Oh, happy day; they took out the OG tube!  Joshua actually grabbed it and pulled it out this morning, so the nurse had to replace it.  He didn't like it one bit.  Once feeds start again, they'll place an NG (nose to stomach) tube.  The skin on his chin is irritated from the tape, but he looks so much better without the tube in his mouth.  On the pictures, his left hand is pink because that's where the pulse ox monitor is taped on, which gives us his oxygen saturation level as a percentage (you may have had the same thing tested with routine vital signs where you stick your index finger into a little plastic device).  96-100% is perfect, and that's where he has been hanging out at through all of this.

 Mom, how many more pictures are you going to take?!

 Say "Cheese!"



This huge pacifier is preemie sized! 

Today he was really sucking hard, so happy to get that OG tube out of his mouth.

Oh, one more thing.  He is growing at a faster rate than before, and here we thought he'd grow less being sick.  Last night he went up to 1200 g, or 2 lbs 10.5 oz.  Yay! 





A Little Better Today

The short story:  If you ask me how Joshua is doing, I'd say he is stable, maybe a little improved.

The details:
Joshua is looking a little better today.  He wasn't so lethargic, and I was happy to see him crying (though not as strong as he did before) when I changed his diaper, and bonus when he had a small load of poop in it for me to clean up.  We still don't have a lot of answers because we are waiting on the blood and urine culture results (they take 48-72 hours).  So far, the working diagnoses are sepsis (bacteria in the bloodstream) from the PICC line and ileus (bowel obstruction) caused by sepsis.  Sepsis is a pretty serious disease, but the prognosis is usually pretty good if caught early and treated with the big gun antibiotics.  NEC is still on the differential, but it seems less likely at this point.  His abdominal x-rays have looked about the same today.  His abdomen is still tense and distended, more so than yesterday, but tonight was improved from this morning.  They are going to continue to hold his breastmilk feeds and re-evaluate in the morning. 

Last night we got a call at 10:30 from "Unavailable" on my caller ID.  That's the hospital.  My heart skipped a beat because I know nothing good comes from getting a call from the doctor at 10:30 at night.  As it turns out, they just wanted to keep us informed that Joshua needed an increase in his oxygen, so they switched him to high flow (still nasal cannula, but the air is forced into his lungs more than low flow, what he was on before).  They needed to increase that during the night, but throughout the day, they have weaned it down.  Two nights ago, he was so alert and healthy and happy, even giving us big smiles (I know, just gas, but they looked like real smiles to me).  Yesterday and today, he has looked pretty sick.  His face was pretty dusky and mottled yesterday and this morning, but this afternoon it looked a lot better. 

I woke up this morning embarrassed that I went on a complaining streak last night for all the world to see.  The funny thing is, I felt so much better after getting it off my chest.  This blog has been so therapeutic for me. 

Today was a great day.  My friends from Moms and Beyond threw a baby shower for me, which was so fun.  Those women have been such a huge blessing to me ever since I joined the group, but especially over the past 2 months.  It was very refreshing to take a break from the hospital and celebrate Joshua as an adorable new baby and not as a sick preemie with lines and tubes all over.  I can't wait to cuddle with him in his new homemade baby blanket rather than seeing him through glass wrapped in those sterile hospital thin white blankets. 

My sister Greta had another layover in Denver, so she spent most of the day with us.  That was so fun.  Plus my mom and dad came back to visit after going home for 4 days (hence making everything "all better" by having them back).  I've said it before, and I'll keep saying it.  No matter how old I get, when times get tough, Mom can always make it better.  Dad too, but there's something special about Mom.  Even if she just makes her famous chocolate chip cookies, the smell brings me back to the innocent days of elementary school when I'd come home to that heavenly smell of fresh baked cookies and feel so comforted.  Aaaaah....  Life is good.

I Used To Love Roller Coasters (Now, Not So Much)

We are constantly humbled and so appreciative of all of your thoughts and prayers.  Thank you so much for that!  This roller coaster ride seems to be never ending, and quite frankly, it's starting to get a little old.  We're trying to stay positive, and we know God is in control of everything, but sometimes we wonder how much more we can handle.  It's just so heartbreaking thinking of Joshua being so sick.  He's so tiny, and it doesn't take much to turn into something serious when he has such little reserve.  He has been such a fighter over the past couple of months, so I have thought of him as being so strong.  But now I realize how fragile he really is. 


For me, I'm trying to be strong, but I feel like my emotions are starting to wear pretty thin.  I keep it together in front of Jeremiah, but after he goes to bed I feel like I'm on the edge of breaking down.  Stress, hormones, lack of sleep, typical new mom stuff that I handled fine the first time around, but the whole NICU thing throws a bigger wrench into things.  For example, it's one thing to be sleep deprived from a new baby, but getting up to pump during the night is not very rewarding.  There isn't much bonding going on with that machine!  I'm taking mental notes to never be annoyed when I can finally hear his cry during the night waking me up instead of my alarm.  None of these complaints are unique to anyone going through a NICU experience, and it could definitely be a lot worse, but for us it has been a whole new challenge with a steep learning curve.  Oh, one more thing I'll try not to ever complain about...if I'm blessed with a normal pregnancy in the future, I'll embrace the discomforts of being in the third trimester, fat and waddling and thankful for a uterus that can nourish a baby that long.  I took so much for granted with my first pregnancy that ended with an induction at 41 weeks!

Sorry, I know you didn't tune in to hear me whining.  Let's talk about Joshua.  He seems to be doing somewhat better tonight.  His x-ray has improved a little.  The bowl loops aren't quite as distended as they were this morning, and there is still no sign of air under the diaphragm, which would indicate a perforation from NEC.  So that's good.  When I left this afternoon, I was concerned because his abdomen was tense and pretty distended, but James just called and said that seems to have improved, too.  He even had a big poop tonight after getting a suppository (praise the Lord).  They are going to continue to hold his feeds overnight and see how he does in the morning.  They removed his NG tube and put in an OG tube, so he's back to that yucky tube in his mouth gagging him, but that's supposed to better decompress his stomach.  The urine and blood cultures won't be back for 48-72 hours, so we won't have those definitive answers for a couple of days.  For now, we'll just continue the antibiotics and wait it out.  I'm so thankful for modern medicine! 


Today, we got the final pathology report back on my placenta.  The genetic counselor called and left a message that she wanted to talk to James and me.  I was so worried as I walked down to her office because I thought if things were normal, she would have just told me on my voice mail, and she wouldn't have implied James needed to be there too.  The MFM drs had speculated on a bunch of potential problems with the baby that could have caused the placenta to look the way it did, such as mosaic chromosomal problems and other rare and freaky genetic disorders.  As I walked down the hall, I'm pretty sure I developed even more gray hairs on my head.  Holding my breath, I sat down, and she said..."it was just the hemorrhage that caused all the problems with the placenta.  The report says you just had a normal baby boy."  WHEW!  That's it! 

All in all, we have so much to be thankful for every day.  The day has definitely ended better than it started.  Thanks for thinking of us and continuing to pray for sweet Joshua.

Urgent Prayer Request For Joshua

Joshua had a rough night last night.  I'll give more info than you probably want, for my medical friends following along.  Starting at midnight, every hour he had an episode of bradycardia (heart rate dropping) along with apnea (breath holding).  The apnea is a new thing.  The past couple of days, he had the bradycardia episodes, which is not at all concerning when that's all there is.  But the apnea associated with it is indicative of something bigger going on, such as an infection.  They got a CBC (complete blood count) that showed a left shift with 14% bands, which  means he has an infection of some sort.  They drew blood cultures, urine cultures, KUB (xray of his abdomen), stopped his feeds to rest his bowel, started a peripheral IV, and started him on two "big gun" antibiotics, vancomycin and gentamycin to treat everything. 

There is a chance it's a UTI (urinary tract infection), but most likely it's an infection in his PICC line (catheter in the vein in his foot that gives him his nutrition).  Also on the differential is nec (necrotizing entercolitis, a rare but serious condition where the intestines die from lack of blood flow), definitely what we don't want.  At first nec was one of their top two possibilities (along with infection in the PICC line) because his abdomen was tense and distended.  His xray showed  no free air under the diaphragm, which would be diagnostic for nec, so that's a good thing.  However, the bowel loops were dilated, so that could be early nec, or an ileus (intestinal obstruction).  They are going to repeat the xray at 4:00 today to see if things have progressed or improved.  If it looks good, they'll restart his breast milk feeds through the NG tube. 

Basically, we don't know exactly what we're dealing with right now except for some kind of infection.  Last night, Joshua was crying vigorously when I changed his diaper, which was a normal reaction to being messed with. This morning, when they were poking and prodding him with catheters and needles, he didn't even flinch. He was pretty lethargic. That worries us.  He has been sleeping ever since the tests were done, which isn't unusual since he sleeps most of the day.  The fact that he is on vanc and gent means it's something serious because those are not antibiotics to be taken lightly.  Any infection in a preemie this small is serious, so we are pretty concerned.  He was looking so amazing last night that I let my guard down.  That's how it is in the NICU.  One minute you think it's smooth sailing, and the next minute something serious can come up.  I was hoping we would somehow be immune to the bad stuff. 

Please keep this little guy in your prayers.  Specifically...  1.  That we get some answers soon.  2.  The antibiotics kick in right away, so that he'll be comfortable and not sick.  3.  That he doesn't have nec.  4.  That he pulls through this quickly, so he can focus on growing and progressing toward graduation from the NICU.
I'll post an update when we get more information. 
Thank you!!!!!!

Rotating Nurses

Joshua is doing so well today! No new issues. His feeds have continued to increase every 12 hours, so he is now up to 9 mL every 3 hours. We're hoping he'll be weaned off his TPN (nutrition through the PICC line into his vein) within a week or so. Tonight he weighed in at 1115 g or 2bs 7 oz. He's getting so big!   He was so alert tonight, and when I showed up the nurse had him dressed in a cute little outfit that actually fit him.  Such a little man. 

Our favorite nurse was working today, but she was assigned to a different patient. She stopped by to say hi, and James asked her why we keep getting different nurses instead of keeping one main one. She said Joshua is so low maintenance compared to some of the other babies, so they like to rotate the nurses to patients like Joshua after they have a couple of rough days with babies who require more intensive care.  I guess we can't complain if our son is labeled as one of the easy ones.  She went on to talk about some of the more challenging patients, such as the poor little ones who are born with heroine addictions from their moms using drugs throughout pregnancy. How sad to think of a newborn having withdrawls. One of the babies has been in the NICU for 46 days going through detox.  Seeing how serious some of these other babies are makes us realize even more how thankful we are that Joshua is doing as well as he is.  Thanks for continuing to keep us in your prayers!

Kangaroo James

Things are looking good with Joshua.  I think his face is starting to fill out a little, and he seems to like the NG (nasogastric) tube better than the OG (orogastric) tube.  Tonight he weighed in at 1090 grams, or 2 lbs 6 oz.  His breastmilk feeds have increased to 6 ml every 3 hours.  They are increasing each feed by 1 ml every 12 hours, and he is tolerating it well.  I guess the biggest thing to report today is his huge, up the back, blow out poop.  Oh yes, folks, that's the stuff that makes me excited these days.  His GI system is working well! 

James spent most of the day with Joshua, and he got to hold him for the first time.  They had about an hour of skin on skin time.  And unlike every cell phone and Ipod type device James has come in contact with, Joshua didn't break!  :)  It was good father-son bonding.  James came home this afternoon, and I drove in, and I got to hold Joshua, too.  We snuggled for 2:30, and he slept the whole time. 

A couple of things I'm thankful for today...

1.  My super flexible job.  I can work as many or as little shifts as I want, and there's no pressure to hurry back to work.  Prior to all this, I was just working one 72-90 hour shift a month in the ER and a couple of days a month doing disability exams, so I was pretty much a stay at home mom anyway.  I can't say I'm feeling a huge rush to get back into things at this point.

2.  Excellent health insurance.  We got a bill today saying Tricare paid it, so nothing for us to pay.  It was for the amniocentesis, one test that had multiple labs drawn off it.  It was for over $6,000!  Holy cow, I wonder what all of those 3x a week ultrasounds and perinatologist visits and hospitalizations added up to!  My advice to anyone who is without health insurance right now:  get on some sort of plan.  I can't imagine going through all this with the underlying stress of "how are we going to pay for this?"  The other thing I realized from that bill was of the >$6,000 charged, Tricare only paid $1,300, and that seemed to be fine with everyone.  In what other situation in life can you get away with paying a fraction of what you owe?  It would be nice to just say, "no thanks, I'm just going to pay $20 instead of the whole $100 water bill this month."  I don't think that would go over so well. 

Got Hormones?

First of all, I want to recognize my mom for being the 10,000th person to view my blog.  Way to go, Lo!  I secretly suspect she has single-handedly accounted for about 5,000 of those views because I can't imagine too many people interested in our saga.  Thanks, Mom!  :)

I spent most of the day with Joshua today, and he is looking great.  His official weight 7 days after birth was 1060 grams, 10 g heavier than birth, right on track.  Both measurements were considered 2 lbs 5 oz.  Last night he had his screening head ultrasound to make sure he hasn't had a bleed in his brain.  It was negative!  One more thing to cross off the worry list.  They will do one more ultrasound before he is discharged, just to make sure, but the likelihood of finding anything at that point is pretty slim. 

He has had several episodes of transient bradycardia, where his heart rate drops way down and MY heart rate skyrockets as the alarms go off, and the nurse rushes into the room.  But every time, it normalizes after a few seconds, and he's fine.  The doctor isn't worried about this at all, just something they see in preemies.  It seems to be related to reflux.  They have increased his breastmilk feedings to 4 ml every 3 hours.  He was acting like he was choking, and then his heart rate dropped.  They took out his OG tube (from his mouth to his stomach) and inserted an NG tube (nose to stomach).   We're hoping the NG tube will help.  Plus, now he can work on sucking for comfort.

This evening I went for my first walk with Jeremiah and James in almost two months.  Things have been so crazy lately; I feel like I haven't had enough one on one time with Jeremiah.  Well, after he went to bed, I had a total breakdown (postpartum hormones, anyone?  Ok, sleep deprivation and generally feeling overwhelmed with everything may have also played a part) thinking about how I've missed out on so much quality time with him over the last two months.  I'm just getting used to hanging out with him like a normal mom again and actually playing with him, and I want to spend more time with him.  James is off all weekend, so we may have him take the lion's share of the NICU time, at least until I've had my fill of Jeremiah time.  That being said, I'll probably have a similar emotional breakdown tomorrow night about missing Joshua, so we'll re-evaluate.  Have I mentioned those darn postpartum hormones?

One Week Old!

ONE WEEK OLD TODAY!  It's hard to believe it has already been a week since it seems like Joshua was just born yesterday.  He is doing amazingly well. We are so excited about that!

Not much new to report today. His potassium level dropped a little this morning, so they added potassium to his IV fluids.  His gut seems to be working a little more, so they have decided to gradually increase his tube feeding to 2 mL every 3 hours.  His bilirubin level continues to decrease, so he's still off the lights.  I got to hold him for 1:30 today, and he seemed to like it. 

He's just hanging out doing what he needs to do:  growing.  He has been gaining about 20 grams a day (30 grams = 1 oz).  He's at 1030g, or 2 lbs 4 oz, as of last night, so by tonight's weigh-in, I think he should be at his birth weight of 1050 g, or 2 lbs 5 oz (I'll let you know for sure tomorrow).  Right on schedule!

Here's something kind of cool.  The neonatologist was telling us how IUGR babies tend to have a good outcome.  They were stressed so much in utero, that with all the cortisol production, their lungs become more developed, so they breathe well on the outside.  They also tend to thrive on the outside, as far as growth goes, to make up for lost time in utero.  It was good he waited as long as he did for his basic development, but it was good he was born when he was, also, because he will probably grow better now.

Here's a picture from when Joshua was 4 days old. 

He's Got the Whole World In His Hands

It has only been a few days of going back and forth to the NICU, and I'm already feeling guilty as a mom.  When I'm in the hospital with Joshua, I feel like I'm missing Jeremiah, and when I'm home with Jeremiah, I feel like I'm neglecting Joshua.  Even though both are getting great care when I'm not there, it's hard feeling like I should be two places at once.

My eyes were opened this morning.  I woke up thinking of Joshua, wondering if he was doing ok in the hospital, with that similar twinge of guilt wondering if I should stay overnight there.  Jeremiah was up and at 'em, wide awake at 5:45, about an hour earlier than his usual wake up time.  Two months ago, I may have been annoyed to have to wake up so early.  But, after so many weeks of James or my mom taking over early morning duty, I was excited to get up, happy to be getting back into a normal routine.  We usually cuddle and read first thing in the morning, but today he woke up ready to dance.  "Music!"  I started the CD player, and a new CD came on.  The song was "He's got the whole world in his hands..."  While I was smiling at Jeremiah bobbing his head, the second verse really hit me:  "He's got the tiny, little baby in his hands...He's got tiny, little Joshua in his hands..." I did a double take to see if I heard it right, and I felt like the song was directed right at me.  Through Jeremiah and his excitement to play music, I felt like God was telling me, "Lighten up.  You don't have to do it all.  I've got this covered.  I gave Joshua great nurses to take care of him, and I'm right there with him ALWAYS, so you don't have to worry.  Just enjoy Jeremiah right now."  What a great life lesson.  When I feel overwhelmed, I need to remember that God has it all in His hands, so there's no need to feel pressure to be or do more than what's possible for me.  Yet another friendly reminder to let God work His plan.  As a friend of mine wrote in a card to me, "Lean on Him.  He has really broad shoulders.  He can handle it." 

NICU update:  Joshua had another great day.  He's off the lights, and he's tolerating his tube feedings well, 2 cc every 4 hours.  He seems to get more relaxed and comfortable each day.  I got to hold him for over an hour and a half today.  He was on his tummy against my chest while I was reclined back.  At one point, he got antsy like he wanted to change positions, and he pushed his arms straight against me and momentarily lifted his head completely off my chest.  I don't know what normal is for this age, but his strength was pretty impressive to me.

Tonight, as I was putting Jeremiah down to bed, I said, "ok, let's say prayers."  Usually he just stays quiet while we pray.   Tonight, he reached out and grabbed my hand, and before I could say anything, he said, "Jeeeeeeeeeeees...Beebee Joshua...aaaaamenntt."  It was so sweet. 

 

Since Joshua got video coverage yesterday, it's Jeremiah's turn now. Here he is showing off his different faces for the camera.

Video of Joshua

Great day today for Joshua.  His bilirubin level went back down, so he was able to get off of the lights at about noon.  His GI system is looking improved with several big BM's and less residual left in his stomach after each feed, so things are starting to move a little.  Yes!  They are continuing his nutrition through his PICC line, which was put in uneventfully 2 nights ago through his saphenous vein in his ankle.  His breastmilk feedings through the orogastric tube have now increased to 2 mL every 4 hours. 

For me, the best part of the day was the hour and 15 minutes I got to hold Joshua.  He just snuggled right up to me, skin on skin, and he fell asleep right away.  Based on his heart rate and respiratory rate and my mama intuition, he loved it almost as much as I did. 

He's getting bigger!  Last night he grew another 20 grams (almost an ounce), now up to 2 lbs 3 oz.

Here's a video of Joshua from last night's hands on care time. Check it out!

Now it's time to brag about my other son for a second. Guess what Jeremiah did today! He went for a little walk with cousin Ryan and Grandma Gus. They were going to just walk to the end of the street and turn around and come back, but he had other ideas. He wanted to walk to the library to feed the ducks. Keep in mind, this is actually walking, no stroller. Oh, and the library is 1.7 - yes, ONE POINT SEVEN - miles away. My mom kept saying, "ok, let's turn around now," and Jeremiah just said, "No, walk! Feed ducks!" Over and over, she tried to get him to turn around, and he had the exact same response, moving those little legs, focused on getting to those ducks. She kept asking him if she could carry him, and he said, "No, WALK!" Eventually, they walked the whole way to the library, and he led the way since he knows exactly how to get there.   Grandma was thankful Grandpa was on stand-by to come pick them up to get back home.  Not too shabby for a little guy who just turned two, huh. I'd say he has a little of his dad's focus and his mom's persistence in him.

Go, Go, GI System, Go!

I went to bed last night so worried about Joshua and the possibility of developing necrotizing enterocolitis.  You'd think I would have learned by now that it doesn't work for me to read up on medical things when I'm in mommy mode.  Blissful oblivion is a beautiful thing.  All I could think of were facts/statistics like a high rate of needing surgery...25% mortality rate...yikes!  He has survived so much up until now, that I had never even considered the thought of him not making it from here on out.  That freaked me out a bit. 

THANKFULLY, he was so much better this morning.  James took the morning shift, and he called me right away to tell me things had improved overnight.  The green bilious discharge from the stomach has resolved.  {Side note:  the liver dumps bile into the duodenum, which is past the stomach, so if bile is found in the stomach, it means the peristalsis, or movement, is going backwards instead of heading out the intestine}.  His abdomen is not as distended now.  He's passing more stool.  His xray showed a normal bowel gas pattern.  All great signs.  They are still watching him closely, but they restarted his "trophic feeds" of 1 ml every 4 hours, so it's a sign they feel he is ready to try to progress.  Whew!  Thanks for praying about this!

James spoke with the neonatologist during rounds this morning, and he sounded pretty optimistic about Joshua.  He said with some preemies, you have to take things week by week or day by day; other preemies' conditions can change hour by hour, or even minute by minute if things are really unstable.  Joshua is one in the "day by day" camp.  The doctor reminded us it's a good thing we only see the doctor twice a day during his routine rounds.  If he had to hover over Joshua all day long, that would be a bad sign.  Good point!

Last night Joshua was up to 2 lbs 2 oz or 970 grams, up 20 grams since the night before.  He's growing like a weed!  :) 

The bilirubin level rebounded a little this morning, so he's back under the lights.  That means I didn't get to hold him today.  :(  Bummer, also, because my sisters, Heidi and Greta, were both here today to see him, and they didn't get to see his eyes uncovered.  Next time.  Greta is a flight attendant, and she had a layover in Denver.  It was so fun to have her come visit!  Heidi and two of her kids, Lainie and Ryan, came for a few days to visit over their spring break.  It's so nice to have them here!  Jeremiah is having so much fun with them!  He has been living it up with cousins and grandparents over the past several weeks, so I have a feeling when they all leave, and the baby comes home, his world is going to drastically change.  Feel free to offer up advice on making that transition easier for him (but we have plenty of time to try to figure that out).   

Heidi, Me, and Greta with Joshua

 Joshua under the lights

 He looks a little smaller compared to my hands.

If you are a man, stop reading now.  I just want to brag to my mom friends that I am a pumping machine now!  Each session has had increased results, and I'm now up to 3 oz per pump, or about 90 ml.  I had such a hard time pumping with Jeremiah, so I was initially concerned how this was going to work, strictly pumping for so many weeks.  In church on Sunday, the sermon notes on the big screen up front said, "...ENGAGEMENT..." I had to read it three times before I figured out the word was engagement and not ENGORGEMENT!  You can tell where my mind was at that particular moment.  Hee hee.