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. 

First Shower

We have found so much laughter in our home with Baby GL these last few weeks.  His spirits are so great.  I even made my first attempt changing his g-tube button, which I have been avoiding for weeks. It's a daunting thing to think about.  This button goes into his stomach so when you take it out he has this exposed hole.  I managed to have my husband distract Baby GL while I deflated the mushroom that kept it in place in his tummy.  The mushroom, which is just a balloon, is filled with about 4cc of water.  So, syringe the water out, slowly wiggle the old button until it comes out.  Difficult task when Baby GL is squeezing into his stomach, contracting the muscles.  I can't imagine this is the most comfortable feeling for him.  I managed to get it out and getting the new one in wasn't bad.  It was just get through those contracted muscles and tissues.  Once in, syringe back in about 4 cc of water and POOF! We're done!  Now we hope the next time it comes out it's out for good.

Unfortunately, his eating habits lately haven't shown us he'll be getting that tube out anytime soon.  He finds playing with the bottle more entertaining than drinking it. He bites down then throws out a giggle an he knows you're watching.  It's out never ending battle, but it's also so darn cute.

Last night I had Baby GL laying tummy to tummy with me.  I tried tickling him in his rib cage area and he reacted with the largest smile and tuck of his head.  He was so so cute!  When he laughs he opens his mouth wide and then drives his head down into his hands. Every time I tickled him he did it so I think he has realized something new. That's the first time for tickling.

The greatest thing that makes me laugh with my husband and him is when he changes Baby GL's diaper.  Baby GL loves to press his feet into the floor to arch his back and lifts his head like he's looking behind himself.  Well, this is how he moves.  He jumps, jumps, jumps until he managed to get himself off his play mat and across the floor.  I've learned to put a blanket down next to the play mat and make him skooch himself to the play mat.  He proves to me over and over that this is not hard.  Well, now when my husband changes his diaper he jumps and skooches himself out of the diaper before my husband gets it fastened.  It takes him many tries until he finally can get that diaper on him.  He hasn't learned to move quickly like all us mother's of the world.  Daily, Baby GL shows us something new.

Today, I decided to introduce Baby GL to the shower.  It's bath day so why not try the shower.  Mommy and baby bonding time.  I took his oxygen off so not to make it an obstacle course in there.  I thought he may cry with the running water on his back, but he really seemed to enjoy it.  He looked for where the water was coming from and just took it all in.  I think he enjoyed being upright for the shower, as well as Mommy having to hold tight so he didn't slip out of my arms.

Our next thing on the agenda will be Monday.  We'll be having another swallow study to see if we've beat the aspirating.  Baby GL has been taking a bottle really well and shows us, by coughing, if he aspirates some.  That's a great sign and shows us he reacts to correct the aspirating.  

Developing

We've been getting over colds in our household.  Because of us getting a little sick we have to be very careful about not making Baby GL sick.  I think we did ok, he hasn't yet shown symptoms of a cold or anything worse.  We have been battling more with his feedings.  He did really well taking his bottle after coming from the hospital.  Now he doesn't seem much interested.  We have had to resort to more tube feedings which he's not crazy about.  We're back to his vomiting fits again.  I was so frustrated the other night with him not eating so I reconnected the feeding pump for a few hours just to get something in him.  It's a constant battle. 

The nurse visited this week.  His weight was only 11lbs 13.5oz.  Not much gain over the week, unfortunately.  It's hard to say why. He really can't get much more into his tummy so we know going up on the food isn't the answer.  We'll see this week if anything has changed.  Hoping for 12lbs.  The nurse seems to think we can be discharged again from her services.  Baby GL is doing very well and there isn't much that she does anyway.  Her visits are just to weigh him and check his vitals.  Even with discharge she'll be back once a month for his synergist vaccines.

We finally were visited by Birth-3, a program for children in need of developmental care.  They set up time with OT, PT and Speech teams to work with special needs children.  Once they are 3 if they still have special needs the school district begins offering assistance.  After our initial evaluation with a social worker we have to have an evaluation of his needs with therapists and that's not for a couple weeks.

We had the start of our follow-up appointments this week.  It was the big one measuring his development.  A lot of questions by the nurse about how he is at home.  That was followed up by OT, PT and Speech doing an evaluation on Baby GL.  They rolled out a carpet and all sat on the floor and played with him. Purposeful play.  They watched for how he grabbed things, was he able to reach across his body, bring things to his mouth, etc.  They even called out his name to see if he knows it.  He reacted and looked at the one speaking so he passed that test.  Overall, his movements and range of movements mimic a typical 4-5 month old.  Not too far off his corrected age of 7 months.  His vocals are closer to a 3 month old which is not surprising since he's been intubated so many times.  Their recommendation was to get Baby GL weekly visits with a physical therapist.  Birth-3 tends to not offer enough therapy services so we are mostly likely going to have to outsource our therapy.

After therapy we went upstairs for a hearing test.  He passed with flying colors.  No worries with him hearing.  in fact he shows up he hears so well that he's actually oversensitive.  He is startled by most any sudden noises.  Also by any quick things happening in his range of sight.  I guess it's typical with some babies and preemies.  That's another thing we'll be working on with him.

It's coming to a point that we will need to work even more each day on his needs.  His favorite thing is being on the floor playing.  While I'm sitting here writing about Baby GL he just let out the loudest burp. Just shows how big he's getting.  Anyway, once he's on the floor he manages to scoot himself up the floor.  He arches and kicks his feet and moves right off his play mat.  That alone is huge progress in our eyes.

Sleep Baby, Sleep

We are so thrilled to have Baby GL back home.  It's taken a few days to adjust to his schedule.  On Monday he went to see his Pediatrician. He was very impressed with how great his lungs sounded.  He lowered his sedative dosage as part of the weening process.  Today we'll be calling the Pediatrician to adjust dosage again.  It's a slow process to prevent withdrawals.  He still will continue getting his 2 daily Lovenox injections. We have an appointment set up for an ultrasound in a few weeks to check the blood clot.  If all looks clear we'll be able to get off the blood thinner.

So we've been playing around with Baby GL's feedings.  The first few nights he was home he was really restless, which made us restless because we wouldn't sleep.  He came home on the schedule he was on prior to going into the hospital.  We were able to tweak that a little bit.  He would get 2.5 oz of formula 4 times a day and then an overnight feeding by pump into his g-tube.  Well, the 2.5 oz was very easy for Baby GL to quickly consume so I bumped him up to 3 oz. He managed that with no problems.  His reflux seemed to really improve over these last few weeks which keeps him from vomiting.  So with the 3 oz he was getting less pumped overnight.  We still saw how restless he was so I adjusted a little more.  Instead of only getting 4 feedings by bottle we began feeding him all by bottle, which begins at 8am and finishes at 11pm.  The luxury of have a g-tube is that he can get a bolus feeding when he's sleeping so the final 11pm feeding is usually fed all through the g-tube.  The last couple nights we've been on this schedule, Baby GL has slept so peacefully and slept through the night again.  I can't say the doctors will agree with our methods, but I can see how much better Baby GL is.

The nurse came on Tuesday to check in since now we are back on her services.  He was weighed and we must be doing something right.  He was 11lbs 11oz and 23 inches.  He's really been gaining well which is great since he lost so much in the hospital.

Baby GL has really been showing us how big he is.  Only in this last week I've seen so many changes.  We were able to get a teaspoon of rice cereal in him by spoon, which he seemed to like so we'll continue working on that.  He is doing so much better lying on his tummy. He'll push up a little but will just be lazy most of the time and suck his thumb.  He seems to fall asleep anywhere now.  I could never get him to lay on my chest and fall asleep.  Now he seems to really love it, but only on Mommy, not Daddy.  This morning he fell asleep playing on his back under the play gym.  I think after everything that has happened he's just finally getting into his own.  He's happy and comfortable and I think he really knows the difference when he's home compared to being in the hospital.  

Coming home again.

What a week we've had.  So after Baby GL's freeing episodes he manage to come to a nearly full recover.  After getting put on CPAP we got the news that he may be able to try high flow.  That's fast progress because usually it's CPAP for a few days then high flow.  He was on CPAP maybe 24 hours and when we returned to the hospital we found him on only 1/2 liter of oxygen.  Turns out they tried him at 4 liters and his saturations were consistent at 100%.  By the afternoon, when we came to see him, he was down to .5 liters. That's almost home oxygen settings.  Huge recovery from being extubated 2 days prior.  By the next day he was on .25 liters which is his normal home oxygen settings.  He just impressed us with how quickly he recovered.

During this time getting off the higher amounts of oxygen there were some cultures drawn looking for any bacteria or viruses.  He had struck a fever a couple days so they were searching for a reason for it. Results came back with a bronchiolitis virus.  Not a common one that the nurses had heard of, but apparently a baby had been in recently with the same virus.  It's treated just like any other virus, with antibiotics.  The virus didn't seem to affect baby GL's attitude.  Later on they found MRSA which is another type of virus, one that is contagious so the staff had to wear their gloves and gowns every time they came in his room.

While intubated Baby GL was pretty heavily sedated.  With that came a journey of weening of the sedation.  It's a very slow process.  He would ween off one med, but change to another that was not quite as strong.  The nurses grade him on a scale watching the signs of withdrawal.  A couple things they watch for were his irritability, trembling limbs, and even sucking. The nurses took his obsession with pulling his oxygen cannula in his mouth as excessive sucking.  We had to reassure them that the cannula game is something we've played for months.  It can definitely get confused with excessive sucking.

So something we found out days after discover and treatment was that Baby GL had a perforated eardrum.  The nurse was briefing us about new meds including an ear drop when we found out. Surprise to us.  I guess they were able to get on top of it to treat it without major damage.  We found out later the virus he had could cause ear infections.  We just hope it won't mean he'll get ear infections regularly.

By Tuesday, Baby GL moved to the 8th floor.  He wasn't in need of the ICU any longer.  Great news, but for us, we prefer the ICU where he gets regular attention.  We knew, though, discharge must be close. In the move the hospital staff managed to leave behind the glass angel ornament Babcia (Grandma) gave him for Christmas.  Housekeeping didn't find it important when they came across it and tossed it in the trash.  The hospital was very nice about trying to replace it for us, but it was a lost cause.  There's always something that happens when we go to the hospital.

Some goals to meet before coming home were to get back to our regular feeding schedule.  Speech worked on his bottle feedings and even made an attempt with applesauce.  He did pretty well, typical first food issues, but we were given the go ahead to keep trying.  

Baby GL will come home getting daily Lovenox injections.  Something very familiar to me since I took that during my pregnancy.  While he had a picc line near his clavicle a blood clot developed so he needs the blood thinner to break it up.  I had to learn the injections with the nurse for us to get that checked off our discharge list.  He'll get those twice a day for a total of 6 weeks when they'll perform another ultrasound to look for the clot.  We also had to learn his other meds because he's still in his weening process from the sedation meds.

Well, after all that, Baby GL came home last night.  It was a wonderful feeling, but I could feel the anxiety creeping in.  We really want to keep him safe now and we worry that we're not doing enough to protect him from all the germs and illnesses floating around.  I don't know that we can keep him completely unexposed.  My husband was so happy to have him home he slept on the couch next to him in the bassinet.  He was awaken by the nurse coming by the check on Baby GL.  His weight has come down, 11lbs 3oz.  He looks very healthy, though.  

We've spent all today getting reacquainting with our care habits and his habits.  The biggest issue is keeping that cannula out of his mouth, an impossible task. We can see some of the withdrawal symptoms coming out so we are trying to be really on schedule with is sedation meds.  All week we've been listening to him cry very quietly with his very horse voice from being intubated.  Today he's showing improvement, his coos just get louder each time.  The scratchy cry is pretty cute, though.  Come Monday he'll be seeing the pediatrician to see about adjusting his sedation meds.  Hopefully he'll see improvement so we can get him off those meds.