O2 still on board

This week we had the echo and CT scan done as planned.  The CT scan showed the normal patterns that preemie lungs show.  With time they will repair themselves.  There wasn't any evidence that the feedings were causing harm to his lungs.  So in my mind that was good news to keep feeding as we've done.  The echo on his heart showed that the hole in his heart is actually getting a little smaller which would mean it may repair itself.  However, there is evidence elevated pressure due to the hole.  Because of that he will continue wearing the oxygen.  I guess it works as a kind medication keeping the elevated pressure under control.  We've been referred to see a new clinic for Pulmonary Hypertension.  When we see that doctor he may try a medication that would allow Baby GL to be taken off the O2. For now we wait.

Speech came this week.  It was our first visit from the Speech therapist from Heath Reach which is the outsourced therapy we decided to go to over doing Birth to 3.  The therapy will be a little more consistent and aggressive for him.  I'm not sure what we'll be doing with speech, but she did give us some information on beginning sign language with Baby GL.  She commented that many children react positively to using sign language.  That has been a small project now that I'm working on.  If anyone has suggestions for teaching sign language I'd love the help!

We also were visited by Physical Therapy this week.  Due to Baby GL's health issues we qualify for home visits, which I prefer until we get fully out of flu season.  The PT working Baby GL hard, which was good to see.  He is very stubborn now.  He doesn't last more than 2 seconds on his tummy until he rolls over.  In fact, he begins the rolling once he sees he going to his tummy.  She pushed him to stay on his tummy.  He shows signs of wanted to move around on his back. When he needs to get somewhere he moves backwards so now we need to work on the crawling.  She also working on him sitting up which he's not thrilled with, either.  After her visit he took a great nap.
It was a busy week.  On top of all that we fit in a visit to a new clinic, Urology.  We need to have his Hypospadias repaired.  This is when the urethra is on the underside, rather than the end of the penis.  The doctor feels he's better off having the repair done now while he's young rather than waiting until he's older.  The process will include 2 testosterone injections.  One done 6 weeks prior to surgery, the 2nd 3 weeks prior.  Can't wait to see how his attitude changes with excess testosterone in his system.  The surgery itself will take about under 3 hours and should be able to come home the same day.  If, by some chance, there's a little hiccup in his recovery he may stay a night.

Baby GL's next couple weeks will be planned as a vacation to Grandma and Grandpa's house.  My husband left to visit family for 2 weeks and I teach early classes so instead of waking Baby GL early to take him to Grandma, better he stays the night and I do the traveling around.  He seems to love the stimulation, but hates the loud noises. It's good for him to get the exposure of louder noises because he still startles easily.

I think for this week our only appointments are with therapy.  We do have more clinic visit coming.  With the weather getting nicer it's been so much easier getting him around.  We even took our first walk of the spring season this week.  He loved it.  He's been trying out his new umbrella stroller.  Amazing how big he is now. 

Vulnerability

We had a visit from the nurse on Wednesday.  Baby GL received his last Synergist shot.  Hallelujah, flu season is almost done!  He always cries with that shot.  I don't blame him because the needle is very long and I'm sure it hurts him.  The nurse weighed and measured him and wow did we have a great week.  His current weight is 13lbs 11oz, she measured his height at 23 3/4 inches.  The height always differs depending on how well he sits still.  Baby GL's weight gain was excellent this month, over a pound gained since the last nurse visit.  If we stay on this momentum he's catch up to his age in no time.  


I officially shifted his clothes around. No more newborn clothes.  We are into the 0-3 and 3 month clothing now.  It's always bittersweet putting away clothes.  I battle wanting him to stay small so I can cuddle him but yet I want him to grow so big to catch up.


Wednesday night I took Baby GL to church for Ash Wednesday.  It was our first time going to church aside from his baptism.  We made sure to sit in the "crying" room at the back.  Makes sense to have a small room separated by glass so not to disturb the other patrons.  There were actually 2 of these rooms and both were full and very noisy.  At the moment we went to receive the ashes I got a little teary eyed. I went to the priest that performed his baptism and it just made me emotional to have both Baby GL and myself blessed.  I thank goodness for each day that I have with him and I still after a year get so emotional about it.  


Walking through the church with him in my arms and the oxygen on his face, I got the feeling that people were staring and I think I get that feeling a lot.  It could be completely in my head, but we have, frequently, the curious questions of why he's on O2.  So many people assume the worst of him because of the O2.  Baby GL sees it as just another toy to play with and put in his mouth.  He actually makes me feel better about the O2 when he chews on the cording.  


So I'm making myself very vulnerable now.  I feel it's important to talk about and I hope that there are others out there that feel the same that I do and maybe are afraid or nervous to talk about it.  I've had moments of breakdown over the last few months.  I know for myself that in moments of privacy the emotions swell up.  Even when I'm driving down the street I remember back to the days when we didn't know the outcome of this journey.  It doesn't take having a small baby in the NICU to feel overwhelmed in our lives.  I don't want to label it as postpartum depression, but I wonder if it's something that can kick in even a year after giving birth.  


We waited 6 months for our son to be released from the hospital and I know that my job during those 6 months were to be the support of our family.  Just because my son came early and he didn't come home I still needed to continue with our life.  There were things to be done, bills to pay, jobs to maintain, household duties that needed to get done to be prepared for our son's homecoming.  I needed to be the one to reassure everyone that the outcome with be successful even though I was terrified to know what could have happened.  Life never stopped, in fact it became busier, as any mother could testify to.  Baby comes and life moves even faster.  


Now that we have successfully made it to a year and we've seen such wonderful progress being made by Baby GL I feel all the emotions that I had to push deep down finding their way to the surface.  I find it harder to get out of bed.  I stand in the shower not wanting to get out.  It's difficult to drag myself to get a workout in and it's simply easier to go to a fast food place to get myself a meal than to try to prepare one at home.  I had to finally break down and open my husband's eyes to how I've been feeling and it wasn't easy.  I don't want to be so vulnerable, I don't want to look weak.  He was always the one that I allowed to be emotional while I stayed the rock.  It was me who made the 911 call, it was me to talk to all the doctors, it was me to handle all "business".  Now, I don't want anyone to think I'm saying anything negative about my husband.  He tried many times to comfort me and even tried to get me out for a spa day, but I couldn't see spending the money when we needed to buy a highchair.  He, just as myself, had to pick a roll and for myself it was easier to pick the roll of CEO.  My name was on all the paperwork because I was the one that gave birth to our son so naturally the doctors and nurses contacted "Mom".  Maybe I'm wrong, but  believe many of us go through the struggles of knowing how to balance our roles and to take the time to care for ourselves.  Our choice is usually to keep the emotion to ourselves and keep the household afloat.  Unfortunately, we get to a point of breaking.


A year in and so much progress made, I can finally take a moment to breath.  I'm not really breathing, though. His meds have decreased tremendously, he's healthy and shows signs of develop and I thrilled.  So what makes my tears of joy and relief change to exhaustion and depression?  I'm always hearing about these mothers on "happy pills".  Do I need those?  Maybe just a good martini.  


So I'm not sure this was the best place to expose myself, but I think the more mothers show themselves as vulnerable become healthier mothers.  No one knows the total package of how they child will grow and develop.  Ours had a rough start and is showing us what a survivor he is.  My feelings should be "phew, we're through the hard stuff".  However, now I'm starting to over analyze.  The idea of Autism is coming into my brain.  How can you prevent it, how will you know if it's happening? Maybe it's not Autism, maybe it's something else.  Will he walk, will he need glasses, what will happen after he's off O2 and he begins to struggle for air?  Daily questions on a moving conveyor that never stops.  The funny thing is that Baby GL knows only his life of playing, pooping, eating and sleeping.  Oh the simple life. Right now, I'm watching Baby GL press the buttons repeatedly on his bouncer and when the music stops, he bounces and chews on his fingers and O2 cording.  So then I wonder why do I do this to myself!


Until I can find a cure for motherhood, I think I settle for a cup of coffee and a comfy chair.

Happy Birthday

It was Baby Gl's 1st birthday this weekend.  Since the whole family was away it was just us 3 together.  I took Baby GL on Friday to have pictures done.  It wasn't the most successful trip we've had.  He is so distracted by the bright lights that he doesn't react to any of the funny faces and noises both myself and the photographer were doing.  It preferred laying there with arms wide open with a very non-smiley face. The only was I could get him to react was to give him a toy in which he put in his mouth so many pictures were with something in his mouth.  We tried to put him on his tummy and he wasn't having it. The photographer had to be very quick with her shots to get anything. In the end we did get some great shots.  The most important picture I needed was one with my hands and his feet.  One of his first pictures after birth was me holding his feet.  I wanted to show how much he had grown.  He went from my finger tips holding his feet to my thumb and index finger cupping his foot.  Any other pictures were just extra from there.

One place I was excited to go was to my OB.  I know what woman gets excited by this.  Well, the appointment came at the perfect time being on Friday.  She delivered Baby GL via emergency c-section and I remember her making it a point for me to see him before they took him into the NICU.  We didn't know the outcome back then.  Now, a year later she got to meet the big boy.  It was exciting for her to meet the miracle she delivered.

Saturday, for Baby GL's birthday, I got him a couple baby balloons. Perfectly sized for him.  No cake for him but I did put a little happy birthday decor on his bottle.  He got a couple toys for his birthday, one being a piano, that would normally go on the side of his crib. However, Baby GL prefers it on the floor, under hid feet so he can bang on it and push the keys with his feet.  I also got him a toy to stick on his new high chair that took me weeks to research and finally buy to have it on backorder.  Oh well.  He won't know the difference if it came now or later.  Who knows if he'll even like being in a high chair.

Aside from his birthday we've been working on getting him through a cold and cough.  The schmutzy nose is pretty much cleared up but we're still battling the cough.  We've turned back to nebulizer to give him the Albuterol treatments. It's a little more effective over the inhaler.  We wait until he's asleep so that he won't fight it.  The inhaler has become a battle to give him now.  He turned 1 and now he's got an attitude.  He's always called the shots from day one so I guess it's not any different than normal.

This week we have a visit from the nurse to deliver Baby GL's final Synergist shot.  It's a sign we're getting out of flu season and spring is coming.  We have another appointment this week, but I honestly am not sure which department we're going to.  It's in my calendar so I know I need to go.

Other things coming up will be his CT scan on his lungs. He'll need sedation for that which is never something I like thinking about. He'll also be having an echo on his heart next week.  Once again we'll have to have sedation for that.  At least both tests are brief.

Thank you to everyone who have offered your birthday wishes to Gianluca.  It's been a long and blessed year for us.  We can see a much easier year ahead and one with great achievements.  

Only a few more days

Last when we left off Baby GL was making huge progress.  I believe we are still in that momentum, however we saw our new physical therapist last Tuesday.  The visit went well, she did an overall evaluation on his skills and play habits.  Different pieces charted him around 5-6 months, others in the 2-3 month range.  After the original evaluation the PT puts him in an overall range of a 2-3 month.  She told us we may need to take our therapy to their other office, which would mean a longer commute each week for therapy.  We are waiting for the verdict of where they want to take his therapy.  We may get OT and Speech from the same clinic which would be good. We are currently enrolled in Waukesha county Birth to 3, but I think therapy from an outsourced clinic would be more aggressive and better for Baby GL's needs.  It's a little difficult to take, hearing that your son, nearly 1 yr, has the "intelligence" of a 2-3 month old.  When I see him and play with him he seems so much older.

So after our visit with PT we had our Birth to 3 Speech therapist come out Wednesday.  She didn't do too much, it was more an overall look into where the therapy should go.  However, this Speech therapist may visit once more but then she's off for 6 weeks so we won't see her.  Outsourcing is sounding like the only option to use to get therapy going.  We just have to wait for approval from the insurance company on what he is eligible for.   So we wait, his fate in there hands.

This week we visited the cardiologist. He hasn't seen one since he was in the NICU and she really didn't do much.  We did get his weight, 13lbs 1oz and the nurse measured 24.5 inches for height.  I'm not sure what to think about it since last clinic visit he was 22.75 inches. I guess just like scales the tape measure have different scales of measurement.  

So the one thing we did get from the cardiology visit was that we will be going forward with an echo to see the hole in his heart which will tell us if he is still in need of the oxygen.  The oxygen helps the blood pressure, so if there's nothing new to see in the echo we can finally be released from the oxygen leash.  At another visit we'll have a CT scan done.  We're unable to have them done together because of the type of sedation they use and the places where the tests take place. The echo is in the cardiology clinic and the CT is down in Radiology.

Doctors and therapy visits aside we are so excited to celebrate Baby GL's first birthday this Saturday.  Since the whole family is traveling it will just be the 3 of us.  It's been a great year.  We've had our challenges, but the end result is a beautiful, cuddly little boy.   

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.