Hallelujah!

Hallelujah, we're finally making progress!  Friday we had our clinic visit with Pulmonary.  Baby GL managed to grow out of his necessary medications for his lungs.  Last time we were there in fall the doctor did not increase his dosages of medications since he was doing so well.  This round she completely took him off the medications based on his weight, age and how well his lungs are doing. It's a huge relief to decrease his daily meds.  That's 3 less meds that he gets, 2 of which were given twice daily, a diuretic and Sodium Chloride.  The other was Potassium, given only once a day.  I'm thrilled that all he needs now is his multi-vitamin and his thyroid med at night and a reflux med right before his first feeding.  So much less to keep track of.

One other change we made was with his breathing treatments.  Up until now we've been using a nebulizer twice daily to give him his steroid med for his lungs.  We've also, frequently given him Albuterol with that steroid.  Together, those meds would take almost 20 minutes to fully give to Baby GL.  With a nebulizer the liquid meds would become a mist that Baby GL would breath in.  During that 20 minutes he would pull the mask into his mouth, scream with frustration, and just plain flip his head the opposite direction to avoid it.  Now we are using an inhaled version of those medications.  We only do the steroid, twice daily, the Albuterol only for if he begins to struggle with breathing.  We still use a mask but instead of the nebulizer we use an inhaler.  The inhaler connects to an OptiChamber that holds the med inside a long chamber until Gianluca takes 6 breaths, pulling the med into his lungs.  There's a valve that moves as he breaths allowing the med to slowly release only by his breath.  We give him 2 puffs and it only take a matter of a couple minutes compared to the 20 minutes before.  It's like a sigh of relief as the stress rolls off our shoulders.  I always made my husband do the breathing treatments because I didn't have the patience for them. I figured if I do all the meds he could do the treatments.  Now I've taken back the breathing treatments and all he gets left with is the last feeding at 11pm.  He really lucked out.  However, I usually make him to the dirty diapers if he's around just to make it fair.

We've been having so much fun with Baby GL.  He's moved onto his jumper being his favorite toy.  Thanks to our good friend for lending it to us.  Baby GL will bounce away the day in there.  He's progressed to rotating in the seat now.  He's gone almost all the way around.  He's figured out how to press the music buttons and he's now found the toys on the sides.  He puts so much effort in reaching for the toys.  One is a sun with a smiley face that he will cry sometimes if he can't reach it.  He will work hard reaching those little arms to get to bend with both hands and pull it to his mouth, tongue hanging out waiting for it to get there.  You can see the joy when he reaches it to his mouth, then he bounces again, most of the time if forces him to let go and stop to try again.

Baby GL's latest weight is 12lbs 11oz.  He's slow in his weigh gain still, but I think all his playtime is why.  I don't want to bump him up too quickly on his feedings, but I think we're making progress.  The Pulmonologist said that with is weight and height ratio he's in the 50th percentile.  However, based on his age he was only in the less than 3rd percentile.  That was when we saw the neonatal clinic a month ago.  People always told me he will only be in his clothes for a short time before he grows out of them.  He's only managed to get into the 0-3 month clothing, some 3 month items.  I can't say I mind, too terribly, though.  It's nice to enjoy him before he hits that growth spurt and outgrows everything, including my hugs and kisses.

 

No more shots

There are weeks that just escape my mind.  These last few months have been moving so quickly that I am in amazement that Baby GL is almost a year old.  He's really starting to show his age.  He has been so playful and eager to do things.  Still isn't thrilled with tummy time, but he now knows that as long as he can get that arm out of the way he can roll over and fix that tummy problem.  He still makes his way across the floor on his back.  Every morning he wakes up at the corner of his crib, head crammed against both edges.  As a typical mother I cushion the corners of the crib but I still giggle when I see him fast asleep ass crunched in the corner.

Last Thursday we had a couple visits to the Children's Hospital Clinics. The first place was actually radiology for an ultrasound.  Since he had a blot clot from his picc line I was giving him twice daily injections of a blood thinner.  I was pleased to see the clot was gone.  It was a successful ultrasound.  The process was very entertaining and Baby GL actually did a great job sitting still for as long as he did.  The technician propped his chest with a rolled up towel behind his shoulders.  He found it funny to do crunches all throughout the ultrasound, which made it very difficult for the technician.  It was really cute, though.  Shows his strength and eagerness to sit up.  He doesn't get past a small crunch yet.

After the ultrasound we went over to the Hematology clinic to get the results of the ultrasound.  There we did the typical get him undressed so that the nurses can do his vitals; weight, height, blood pressure, pulse-sox.  After that they take us to a room where we sit and wait. It's a terrible process because you wait longer than it takes to get through the appointment.  Midway through waiting I told the nurse we had another appointment in the GI Clinic.  Well, she ended up sending us up there since the results weren't ready yet.  Well, we made our way from the hospital, which is where Hematology is, over to the clinic building.  There in the GI clinic we once again went through the process of getting Baby GL's vitals.  You would think that the vitals from the other clinic was good enough, but I guess the scales are foreign in each place.  He managed to lose a half ounce between clinics.  The nurse knew that because she saw the vitals in the computer, but still we had to do it all over again.  Something is not quite right with this process.  Aside from vitals, I filled out the same paperwork again and answered all the same questions again.  After that we waited....and waited.  A 20 minute appointment turned into over an hour because of the waiting.

So from the GI clinic we made our way back to Hematology to again wait.  I think these clinics would find better efficiency if they scheduled their appointments by how long an appointment actually takes, but that would just be too obvious.  Over 4 hours we were at Children's. Baby GL was not a happy baby towards the end.  Just at the moment he would fall asleep was when the doctor or nurse would come in.

Well, we survived.  In the end we were pleased to not have to give the daily injections any longer.  The one thing we got from the GI clinic was that we need to schedule a CT scan on Baby GL's lungs to see if any of the aspirating has been doing permanent damage.  So during the appointment this week with the Pulmonary clinic we will get that scheduled.

The rest of the week has run pretty smoothly.  Baby GL plays, talks and we still practice spoon feeds.  I did accomplish getting his physical therapy set up so that will start next week. We'll see how pleased he is with that.   

Baby Monitor

Something I've been working on this weekend is testing out a new baby monitor.  I've been looking for months for a video baby monitor.  We want to be able to see our son since he has tendencies to pull his oxygen out and push himself up to the end of his crib.  It's more comforting having an eye on him, but knowing he's in a quiet room to get a good nap in.


So the monitor I purchased was the Summer Infant Baby Touch Digital Color Video Monitor.  It was very expensive, however, it had a lot of features.  I love the fact that with how much Baby GL moves around his crib I can find him because the camera pans side to side and up and down.  It also has a zoom so I can get in close to see if he still has his oxygen in his nose.  It typically ends up above his nose because he rubs his nose when he sleeps.  For those who like their Ipods it's nice, it's similar in size and it's a touch screen.  The monitor does connect to the tv, as well, so I can really keep my eye on him while I'm doing dishes or cleaning. 


So I'm wondering if anyone has used a video monitor that's similar in it's features.  Maybe there's another brand out there I haven't discovered.  I would love your comments or if you're looking for a monitor for your child I can be your tester.

Snow Angel

So when we left off last Baby GL had finally rolled over.  He has since rolled a few more times.  I think it's more out of the frustration of being on his tummy that gets him motivated to roll onto his back.  My mother had him on his side on the couch and he managed to roll the rest of the way onto his tummy.  If he has a little help he seem to get there.

We took Baby GL outside in the snow for the first time.  He was so bundle he had no idea even where he was.  I did manage to get a snow angel out of him.  It was a very quick jump in the snow and get back inside where it was warm.

We are in the middle of a very busy week.  Friday, I took Baby GL for some lab work for his appointment with the Endocrine Clinic we had yesterday.   He did so great.  He gets his labs done like a big boy, in the left arm.  Endocrine is keeping tabs on his thyroids.  He currently takes a tablet daily, that I crush up and put into his g-tube, to regulate his thyroid.  His labs looked normal which means that he'll probably continue to be watched with his lab work and come off the meds later in the year.  During his clinic visit there isn't much done.  The nurse asked general questions, then a student doctor came in to ask more questions until finally the doctor came in to squeeze his neck, belly and feel for his testicles.  The thyroid works to produce hormones in the body so I guess it all makes sense.  I'm not sure what she would find by touch, maybe something being enlarged.  I actually didn't think to ask since while she was poking I was feeding Baby GL a bottle.  It seemed to distract him from the poking around.


We also had a visit from the nurse today.  Baby GL was due for his monthly synergist shot to prevent RSV.  He'll only have one more after this one.  It's not a fun experience.  Baby GL always cries.  The needle is terribly long, I can't imagine that feels very good.  The nurse weighed him, 12lbs 3oz and 23 1/4 inches.  It's not much weigh gain over the month, only about half a pound.  That signaled to me that we need to increase his feedings.  He's shown that he cam handle what he's getting now.  He takes 3 1/4 ounces in full most of the time now so I think we need to bump it to 3.5 ounces.  Over the day thats 1.5 ounces more.  With his activity level now I think he needs the extra nutrition.  He hasn't had much issue with his reflux which has lightened my laundry loads. 

Today we had an evaluation with the Birth-3 program in our area. They offer therapies for children that qualify.  After we discussed his progress I decide the advice of the hospital PT, OT and Speech groups was better, to look into an external therapy.  Birth-3 is not as aggressive of a therapy for him right now.  I believe that he's been doing so well and he tolerates a lot right now that he could handle a heavier therapy to get us moving in the right direction.  He may change his mind and decide he's not crazy about a therapist moving him around so that is when we will bring Birth-3 back in.  The style of therapy they offer is more of a parent education on home therapy, but not often enough to be aggressive.  We already do some home therapy with getting him on his tummy, helping him roll, getting him sitting up, etc.  We can only do so much at home.

Tomorrow we have another round of clinic appointments.  We'll start in radiology with his ultrasound where he had the picc line during this last hospital visit.  Since he developed a blood clot we've been giving him 2 injections daily of Lovenox, a blood thinner.  Now, after 6 weeks, we'll see if its cleared up and we can stop the injections.  His poor little thighs are bruised up from the needles.  I remember how bruised up I was from giving myself those injections during my pregnancy.  After the ultrasound we'll discuss the results in the Hematology clinic.  After all that we get to visit GI, gastroenterology. I'm not sure what we'll discuss in that clinic this time.  They usually take a look at the g-tube sight and follow-up on his feeding progress. I'm sure they will have the results from the swallow study that showed us he was still aspirating during feedings.  I always feel nervous going into the clinic with that knowledge because I just don't want that J/G-tube back that made us all miserable.

We'll have a little break from appointments until next week when we go into the Pulmonary clinic.  I'm excited about that one.  We may get to remove the oxygen or go part-time on oxygen.  I'll be on the edge of my seat until then.  
 

Rolled Over

So yesterday, since we were snowed in with no place to go, Baby GL and I spent the day playing.  Well, I wouldn't say just playing, there was a lot of time spent eating and sleeping, too.  Mostly him, not so much me.  Baby GL loves to play on his play mat, so that's where he spends his play time.  Various point throughout the day I will flip him over onto his belly, which is not something he likes for long periods.  He'll tolerate it very well for a few minutes.  He prefers tummy time more upright, either being held or on in incline, like on his Boppy pillow.  You can see in the picture what he does to get out of that deal.  Well, yesterday he proved to us just how much he doesn't like tummy time.  I put him tummy down and instantly he pushed up into what I would consider an upward facing dog yoga pose.  Basically a push up.  From there he slowly leaned to the left and POOF! rolled over onto his back.  It was so casual, he just rolled and looked up at me like he proved me wrong about putting him tummy down.  

I'm hoping this is just the start for him.  Baby GL is almost 11 months old.  Rolling over would be a great accomplishment for him.  Maybe a semi-crawl by his birthday?  I may be a little ambitious, but he surprises us everyday.   
Boppy Bare Naked Expandable Miracle Middle Pillow

Swallow Study

Yesterday was another swallow study.  It's a very interesting process.  Baby GL is in a chair that looks similar to an infant bicycle seat for the back of a bike.  We put on our leaded vests to protect us from the x-ray machine that's filming Baby GL's swallows in real time. The machine is put up to Baby GL and we can see his whole jaw line down into his throat.  We saw some teeth in his mouth, even though they haven't broken through just yet.  We know they're coming.  A bottle is then prepared just like at home except with the addition of a dye that can be seen in the camera. We were positive that the study would show Baby GL as a perfect eater, no more aspirating, and a great suck/swallow pattern.  Well, he does have a great suck/swallow pattern when he gets in the groove, however, he is still aspirating, and it's silent.  When a child is silent aspirating it means they are not coughing which would help release what ever went into the airway.  We thought for sure this wouldn't be the case because at home he coughs often, especially when he's hurrying through his feeding. Silently aspirating is not something that can be detected without the camera.  It's a scary thing to think about because we would never be able to tell at home if that was happening if he didn't cough.  The aspirating just keeps him at higher risk for pneumonia.

After trying the bottle we made an attempt with some spoon feeding.  He did really well.  We could see on the camera that he took some good swallows.  He gagged a little, but more from the unfamiliarity of having a spoon in his mouth.  

The result of the study was basically not changing much of what we've been doing.  We are to let Baby GL still take a bottle, after 15-20 minutes we should stop, which is usually when he naturally tires out.  The remainder of food is to be taken through his g-tube.  The one thing she told us was to get through the whole feeding in about 30-45 minutes.  It's not an easy task.  If Baby GL is awake when we feed him through the g-tube he usually ends up vomiting.  He wants to jump and wiggle around every moment he is awake which just shakes up his tummy.  We always work towards him falling asleep while he takes his bottle because then we can tube feed him with ease.

We await the day when we can finally be done with all the tubes.  I think the oxygen tubing will be gone before the g-tube.  Currently, Baby GL takes his oxygen off on his own. It spends most of the day in his mouth or on his forehead rather than in his nose.

We are making strides in his tummy time.  He still isn't a big fan of lying on the floor.  He works on pushing up and kicking his feet, but after a few minutes he gets frustrated. His favorite position is standing in my lap.   I relax on the couch while he jumps away.  I think he tests himself because he'll grab onto my shirt and start leaning back. I'm not clear if he's leaning back on his own or if it's his loss of control.  I  think sometimes it's both.

We've fully weened off all the sedatives.  It was a struggle over the weekend.  He had moments where he would tremble in his arms and get very agitated.  It took a lot of rocking and bad singing to get him to take a nap.  Once he did he would usually wake up showing lessening signs of withdrawal.  It's crazy to think that our son, only 10 months is having drug withdrawals.

This week Baby GL will be 11 months old, almost 8 months adjusted.  Soon he'll have his first birthday, then it will be summer, maybe he'll be walking? I think we'll settle for crawling.