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.

Free at Last

Baby GL is calling the shots now.  He managed to flail his arms free of everything.  He flailed so much his iv fell out, it wasn't in use anyway.  He flailed the other arm too, so much that his arterial line moved it's way loose.  The nurses do a really do job at making sure these lines are secure, so I can say this was not an easy task for the average patient.  Good thing for him, though, because now he has his hands back. I don't know how they expected a 9 month old baby to stay strapped down.  When I went in to see him he was fully bundled in a blanket with the sand bags they use for positioning him all laying on and around him.   All I saw was his face, but he was very sweet and fast asleep.  The nurses told me that every once in a while when they looked in on him he would manage to get one arm free. That is his personality.  He was never much of a swaddling baby.  It was comforting to hear my Baby GL was back to his feisty self.  Aside from that I was given the news that if all goes well, he'll be extubated in the afternoon.

We've made progress.  Yesterday afternoon Baby GL was extubated, no more tube.  He was put on the CPAP, which he knows very well. He was very happy to get rid of that tube.  The nurses told me he was in relief and immediately showed it after extubation.  After extubation they did an x-ray to see how his lungs were doing. Unfortunately, the right side wasn't looking good.  He had a breathing treatment with Albuterol around that point and he seemed to cough up a lot of junk from his lungs.  With his lungs still looking ill the doctors wanted to try that NAVA system with the CPAP.  It is a new technique that hasn't been used much yet, but it was successful for him while intubated.  When the doctor came in to check on him he was surprised at how comfortable and peaceful he was so they decided to hold off on any changes until later in the evening, after another breathing treatment and x-ray.  I was left sitting on the edge of my seat until after 8pm with the decision.

Come later in the evening Baby GL did manage to self-repair his lungs with the breathing treatment and rest.  His x-ray looked much improved so the doctors held off making any changes to his current oxygen settings.  That gave me relief.  There was the chance that if his lungs still weren't improving they were going to have to re-intubate which would set him back tremendously.  Do you see how Baby GL loves to live on the edge?!

I'm looking forward to see how our New Year will progress.  It's hard to image Baby GL as a toddler with all the fight he's given us as a baby. 

New Ventilator

Baby GL is still having a long nap, however, he has moments when he wakes up to make the nurses dance for him.  As of Sunday we had success removing the paralytic meds.  Baby GL is still sedated on a few different meds. He continues to get a fentanyl drip for pain and a couple others meds that keep him settled and calm. Yesterday we were able to come down on the dosage of sedatives, but when he has moments of discomfort and begins flailing his arms the nurse do have to bump a little extra to calm him.  It breaks our hearts to see him open his eyes that little bit.  You don't know if it's pain or drowsiness.  I just want him to sleep so I don't have to wonder if he's in discomfort. When that flailing begins the nurses have to try tying his arms down.  He has an arterial line still in one wrist and an iv in the other.  We gave him a pacifier to try to comfort him but I think it made it worse.  Baby GL likes to hold his pacifier now and to put a thumb or finger in with the pacifier.  He couldn't do that so he became more upset.  He even had that thumb stuck out and ready to go.

Something the doctors have been mulling over the last few days was if they should try a new breathing system call NAVA.  It works with the patient more. It takes an NG tube (through the nose), and a sensor, of sorts, is placed by his diaphragm.  The machine predicts the next breath so that it knows how much assistance to give, if any.  The machine allows Baby GL to do more of the breathing on his own.  The doctors decided yesterday was a good day to get him on it.  Turns out, he loves it. He has been calmer and on less oxygen since being on the NAVA ventilator.  He is still intubated, but hopefully this will move him faster towards extubation.

Due to the paralytics and sedatives the nurses have been working on getting Baby GL's gut working.  Those meds cause ours systems to slow down so it's harder to have a bowel movement.  He has had glycerin, some other drug, as well as a couple enemas.  With his system on slow motion his feedings have been held.  He was up to normal feedings with his formula a couple days ago.  I think its been a day or so he's just been on iv fluids to keep him nourished until they can start that formula again.   The problem with the formula was he wasn't digesting it well.

At this point we are just waiting on him.  His lungs are looking better each day.  Now on the NAVA ventilator he won't be getting the IPV breathing treatments that seemed to really clear up his lungs.  The only thing we can do is wait until he's ready.  My guess is he'll still be in the hospital another week if not longer.  It just means I'll be spending New Year's on the very uncomfortable hospital pull out.  However, I get to spend it with my baby.

Christmas Smiles

Baby GL is having a very long nap.  Once he wakes from all this I'm sure he'll keep us awake for days.  His condition is improving.  All of his tests came back negative, which means no RSV.  The doctor also says it's not pneumonia.  That's wonderful news for us because that means he's not aspirating and we won't need to deal with GI during this visit. Even though he doesn't have either of these severe illnesses he is still dealing with a nasty bug.  His lungs are just not strong enough to handle any kind of respiratory bug.  We hope once we're past flu season we wont have to worry as much.

Yesterday the doctors made an attempt to stop the paralytic meds. As I and my husband suspected, it didn't go well.  A sedative isn't strong enough for our stubborn Baby GL.  He never enjoyed intubation so we expected him to fight, which he did.  As a result he was put back on the paralytic.  He just needs to recover because when he fights he clamps down and can't get the great airflow he needs in his lungs.  They may try again removing the paralytic tomorrow.

Today the RT removed the ion meds from his breathing tube.  He's been weened over the last day.  The nurses also switched over his feedings and meds.  He's been on TPN IV nutrition and only small amounts of formula.  He's officially off the TPN now and moving to full formula feedings via g-tube only.  He's been getting an Epinephrine drip for the last couple days also they are weening.  The last thing they removed was the foley catheter.  Now they just weigh his diapers as they've done during past visits.  I think until tomorrow that's all the changes.

I stayed with Baby GL last night so that he wouldn't be alone in Christmas.  About 4am the nurses and RT came in for one of his breathing treatments, as well as another x-ray.  I had to leave the room for that.  Before I left I was pleasantly surprised that Santa didn't forget Baby GL.  He had some wonderful gifts at the foot of his crib waiting for him.  He got a Mr. Bump toy which brings back so many memories for me.  I loved the whole Mr. Men series and it just brought a smile to my face.  It was so sweet that he was remembered, even in the ICU.  He even had a visit from Santa on Christmas Eve morning.  One of the doctors grows out his beard and dresses up for all the kids.  It really warms a families heart to know the kids are being so well taken care of.

The most information we have for Baby GL coming home is that they are looking at Friday to be their goal for extubation.  I'm hoping it will be earlier.  It's really up to him, though.  Baby GL has always decided his schedule.  We had hopes to have him home sooner than a couple weeks but it doesn't look like that may happen.  He's in a safe, protective place for making him completely healthy so we can complain.  We'll have some time now to sanitize our home and make it very clean for when he does finally come home again. 

Santa's sleigh? Ambulance ride

There is a point when you look into your child's eyes and you feel like time has slowed for just a moment.  It's in that moment today that I felt fear overwhelm me and my adrenaline cruise control came on.  This morning I made a last minute appointment to see the pediatrician about a cough and heavy breathing that Baby GL has been having for about a day.  The cough has been an issue we've been dealing with on and off for weeks now, but yesterday it got progressively worse. We've had a few nights of little sleep due to his discomfort.  I feared that we were going to have an issue with putting him in the car seat since the last time we had breathing issues the car seat just accelerated the problem.  My feeling was correct and I watched as Baby GL turned dusky, eyes wide open, just staring at me.  He couldn't cry, not even gasp for a breath.  That was a moment I will never get out of my head. It only took a second for me to grab my phone and just dial the 3 numbers a parent dreads.

The moment I took Baby GL out of the car seat and laid him on the couch he was able to breath and cough.  As I was speaking to the responder on the phone he was kind of crying a little, but then soothing himself with sucking on his fingers.  It was only minutes and we had 3 EMTs in our living room.  There decision was made quick to just scoop him up and take him to the ambulance.  We decided Children's hospital was the best place to take him since he was there just months ago being treated for pneumonia.

The whole ride in I could hear him cry.  It was actually comforting because I knew he was breathing...and fighting with the EMTs.  Once at the hospital he was prepared with an oxygen bag, monitors, and a whole slew of doctors and nursing staff.  Deja vu, I think we've been here before.

One thing they did right away was measure his blood gas, which measures how much CO2 was in his blood.  His normal range is about 50-60.  Today, it was 100.  Intubation was brought up at that point. Since I've seen him intubated already so many times the doctors made the attempt to try a CPAP and see where his gases go.  It wasn't a successful try.  He fought the RT who tried to get the mask put on.  He was all fists in there.  The nurse nicknamed him "ALI".  We discussed sedation, but seeing his drop in saturations when he got excited the best decision was just to intubate.

After being sedated they were successful in intubating Baby GL.  The one thing about intubation is that it will give him a rest.  His little lungs have been working overtime.  After intubation in the ER they finally has a room ready for him in the Pediatric ICU.  Up there he was undergoing more tests and a pic line needed to be put in.  He had a pic line, an arterial line and a foli (? not sure about the spelling).  It's basically a line that I'm guessing goes to the urethra because it's meant to collect his urine to measure his output.  He needed restraints on his arms because of all the lines.

Since we were continuously being kicked out we took that as our cue to leave for a bit.  After a couple hours, now into the the early evening, the doctor called me back with an update.  There was a concern about Baby GL having some spasms in his arms so they wanted a head CT to check if he possibly had a seizure.  Then he continued to explain that since he does have a whole in his heart and his lung are already so damaged he his as higher risk for pulmonary hypertension.  Because of that he was being put on an type of inhaled ion med.  It was connected right to his breathing tube.

When we finally arrived back at the hospital there was still a lot going on.  The CT came out fine, no seizure.  However, he was dropping his heart rate which they are still going back to the idea of the pulmonary hypertension.  He was connected to the ion drug and had another x-ray to make sure his tube was correctly placed in his airway.  Due to our little Baby GL being such a fighter he needed to be not only sedated but given a paralytic for the time being until he can relax in his new settings.  The nice thing about the paralytic is that he will not remember any of this.

Most likely we will be spending Baby GL's first Christmas on the fifth floor of Children's hospital.  He'll be in good company, I think.  There are some other babies there.  Tis the season for RSV and other respiratory junk going around.  We just hope he won't need to be in there woo long. 

Growing

We are nearly to Baby GL's first Christmas.  Prior to Christmas coming, Baby GL had another synergist shot last week.  The nurse comes to give him his shot.  That one is very important to protect him from RSV which preemies are at higher risk at getting.  He'll get the shot monthly through the winter.  I can't say it's a pleasant visit from Gianluca.  He's never crazy about the band aid on his leg.

His weight during the visit was 11lbs 5oz, 23 inches.  He must have hit a small growth spurt because the time between 21-23 inches went very quickly.  I'm putting away more clothing now because there's no room to stretch his legs.  I find a lot of his clothing to make him feel better physically, because so many are huge through the tummy, but very short in the length.  For Baby GL, who has shorter legs and arms, it works towards his advantage.  He may not realize the sizing issues now, but I can and he will see his pictures when he's older.

Our day to day is pretty much the same, lately.  We've been trying to work more on his exercising.  We haven't had a visit from therapy in the last 3 weeks so we've been doing the exercises we were taught and extra we feel he'll love and benefit from.  Most of the time we're working on getting him to laugh.  We get goofy and he gets the "you're strange" look on his face.  However, we do crack a giggle sometimes. He seems to have a better mood in the morning so we'll see more smiles and giggles then.

We've been struggling with our sleep the last few nights.  Baby GL will begin screaming without even waking up.  Usually we can fix it with the pacifier, but it won't always last long.  It's like he knows when you get in bed and lay down because that's the point he'll explode.  This morning it occurred to me why he may be having some issues.  In an attempt to be a "health promoting" Mommy and get in the band wagon of brown rice I tried it on Baby GL. Apparently, there's a group trying to get parents off the habit of feeding white rice as the 1st food to babies.  I agree with the logic, but i think it's hard for Baby GL to digest which may be the reason for the sudden change in his sleep habits. As much as I would love to promote a health start to my son's diet I can't support his screams of pain.  In the Ayurvedic diet (Indian), brown rice is actually not great for easy digestion.  I will go back to the plain single grain rice for him and we will see if it makes the difference.  I hate to experiment with my son's meals but I just want to find what makes him most comfortable and promotes good growth.

Unfortunately, Baby GL is a little too young yet to take part in the holiday meal and many festivities of the season.  I get his attention when I sing him Christmas carols.  Again, I get that look of uncertainty from him.  I like to think he gets that it's a holiday.  He definitely knows it cold outside, because he gets bundled so tightly when we go out. Maybe no sledding this winter. 

No More Nurse

Snuggled and sleeping in my arms while I write.  Baby GL is doing great. We are snowed in for the day so it's perfect for a little lovin' time.  He is getting so clever each day.  He loves to pull his oxygen cannula down from his nose and suck on it in his mouth.  I'm constantly re-taping the cannula in his nose.  He's also getting closer to rolling. He kind of rolls up a little and drops to one side, but then straightens out to roll back to flat. He'll go back and forth while pulling on his toys on his play mat.  

This week Baby GL finally arrived at 11lbs, 22 inches.  We're hoping to get better results with the new feeding schedule.  His reflux seems to be improving.  He still will have some vomiting episodes.  This morning during his morning meal he vomited and looked at me giggling.  He doesn't giggle much so I just wonder what he was thinking at that moment.  Maybe "ha ha Mommy has to clean me up!"  

As we've adjusted to the new feeding schedule, we've actually made some changes.  Our hopes is to get off the feeding tube.  With a 2oz feeding, Baby GL does really well as finishing without the need to use the tube.  What we decided to try was bumping him up to 2.5oz by bottle each feeding, which would be 2oz less we've need to feed via pump overnight.  By doing that we may be able to move to one extra bottle feeding and even less time by pump.  It's a process and it takes time to make the adjustments.  Patience is not always on our side. We're trusting we know what we're doing because now we've been discharged from our weekly nurse visits.  She'll now only come once a month to give Baby GL his synergist shot to prevent RSV, which is a respiratory illness that affects preemies.   He'll still have his therapy visits so at least we're not completely on our own.

Each day is such a blessing for us. Now moving into the holiday season we are having so much fun with Baby GL.  I hope that we can get him out in the snow one of these days, but I'm not going to push it.  We'll just continue to spend our time snuggling and playing.