Day before surgery

Tomorrow is a big day for us.  We've managed to go over 5 months without a hospital stay and we're hoping to keep it that way.  Baby GL has his Hypospadias surgery tomorrow.  It is only supposed to take 2-3 hours and he would come home the same day.  The complication that could happen is that he may have difficulty coming off the ventilator.  Because of being put under for more than an hour he'll need to be intubated.  Anytime we intubate it strikes a tender spot within me.  Even when we were have the pre-op talk with the doctor I nearly teared up.  It's a very nervous thing to think about.  If he has problems coming off he may need to stay admitted for the night.  Not something I would be excited about doing.


So for now we just have pleasant thoughts about bringing him home after a very successful surgery.  We're planning our nightly feeding.  He will need to stop any formula or solids by midnight, but he can have clear liquids like water or Pedialyte up until 9am tomorrow morning.  We need to be at the hospital for 11am for surgery at 12:30pm.  It was good to hear that they won't be placing an IV until he's under anesthesia.  He won't feel anything then, which make me calmer.  


Send out positive thoughts for Baby GL in the afternoon.  We know things will go well, but I can help being an anxious mom.

Pre-Ops

It's been a pretty busy couple weeks in this family.  Baby GL just keep us on our toes nowadays.  He's moving around with ease.  If he wants to get to something he will get there.  It may take a roll, reach and scoot but he'll get there.  Something we did together was a Baby & Me yoga class for my prenatal students. It was great to show them some poses to bond with their babies and Baby GL loved it.  His favorite is going upside down.  It brings an immediate giggle.  


Our clinic visit last week was for Endocrine, they check his thyroid.  He's been on a tablet for his thyroid since he was in the NICU and it sounds like he'll continue to stay on it.  It's really his only med he's taking for now.  It's the only clinic we need ot have labs drawn up for.  That is a terrible experience for Baby GL.  He has such small arms that it takes a while for the nurse to draw blood.  In this case they started in one arm and ended in another.  I'm not sure how that can be a happy experience for any baby.


So I took my trip last week.  I was away from Baby GL for 4 complete days.  I really thought I would be falling apart.  He was on my mind everyday with everything I did.  I survived, though.  I at least was able to connect over the computer with him.  I think it was probably a good way for me to be away from him for the first time.  It's always a struggle as a mother to put your trust in everyone else to take care of him.  I wrote out a schedule for my husband, by the hour and even added that he's need a bath.  I did the same for my mother. I've never been so type-A until my son arrived.  Now I have to work on relaxing.  Maybe next time I'll try going on vacation.

So today we had our Pre-op appointment for his surgery next week.  It was just a general informative visit.  He needed his vitals checked, weight and height.  We were given a schedule for the day as well as instructions for when to stop feeding him.  I actually got emotional during the appointment when the doctor mentioned he'll need to be intubated.  I knew that he would be but when she started talking about it the whole thing became very real.  We've seen so many bad moments in our son's short life that have included him needing to be intubated.  His surgery is 2-3 hours long so it's too long to go without intubation when under heavy anesthesia.  We should be able to take him home in the evening, however, if he has issues coming of the ventilator it may turn into an overnight stay.  My hopes are to put him to bed in his own crib.  Our week now is preparing ourselves for surgery on Monday.   

Tummy Sleeper

As I sit here I'm listening to Baby GL makes the strangest noise with his throat.  He finds it entertaining to scream in the form of a throat clearing noise.  Very unique to our child, that is for sure.  I listen to him all day long and from the time we brought him home I assumed his voice would change and he would develop a loud, outrageous cry like a typical baby.  Not Baby GL, his cry is as horse as it's been from day one.  He has good vocals, though.  When he chooses to he will let out screech that you'll hear rooms away.


Baby GL continues to impress.  He has changes him traveling ways from scooting on his back to rolling across the floor.  Within moments he'll be across the room with his O2 tether wrapped around every toy and chair.  He has no interest in being on his back now.  Last time when I checked on him he was fast asleep on his tummy.  First time since he was in the NICU.  The last few nights he would roll onto his tummy in his sleep and wake up crying so to find him lying comfortable sprawled out, tummy down, it was so rewarding.  The progress he's make shows how much the therapy has been working for him.  He's even gotten to 3 meals a day on solid foods.  His favorites so far are peaches and pears.  Not a big fan of much else.  We like to stick with what we know he likes to progressively move into a more diverse diet.  


Yesterday Baby GL had his second testosterone shot.  He is never happy to get a shot, but he recovers quickly.  I remembered not to feed him prior to getting the shot.  No messes this round.  We're only 3 weeks away from his surgery, which we anxiously wait for.  It's not a serious surgery but when a child needs to be put under you always are concerned.  My husband asked if Baby GL will need to be intubated and I couldn't recall if the doctor said.  I actually think he made need to be which is always hard on our nerves to see.  We just want to run smoothly.  


Yesterday was also my first NICU Yoga class.  Working with the Support Specialist for March of Dimes at Children's Hospital, we were able to organize a Yoga class for the parents still visiting their babies in the NICU.  We started with three moms and they were so appreciative to have an excuse to breath.  So many stories of stress and worry still in the NICU.  I think the program will continue to do well.  We're going to try doing 2 yoga classes a month to see how  the parents respond.  We already had a request to do a Baby & parent yoga class with baby dolls so that the parents have a reference of what they can be doing with their babies when they finally get to take them home.  Baby GL and I did a Baby & me yoga class and he loved it.  I think the goal of most NICU parents is just to be with their babies and hold them closely.  I know the feeling of needing that.  There are too many moments in the NICU when you have to be on the nurses and doctors schedule to hold your own child.     I'm actually having my first trip away from Baby GL for the first time since he was born.  I'm not sure how I'll handle not being able to kiss him goodnight.  Thank goodness for Skype.


I'm not sure what to expect next with Baby GL.  He's been surprising us with so many new things.  I'm going to guess that crawling may be next on his list.  He gets up onto those hands and knees and just rocks back and forth.  He can't quite figure out how to move.  He'll lift a hand off the floor to reach forward, but then land on his head.  From there he gives up and rolls over.  It doesn't last long until he rolls over again.  He's pretty forgiving like that.

Rolling, rolling, rolling

Our week has progressed very well.  Baby GL is rolling like a pro now.  It only takes moments now for me to find him 5 feet away and facing a different direction.  He rolls onto his tummy, then rolls off, then he scoots and continues to roll again.  When he wants something he is determined to get to it even without the ability to crawl yet.  


Slowly we've been eating more by spoon.  It may only be a few bites, but I'm so pleased.  Baby GL still won't open his mouth wide for a spoon like he does his bottle, however, he doesn't swat the spoon away now.  He makes a small movement forward with his mouth just open enough for a small spoon to slide in. I will take anything I can get.  He is very excited to try eating what we put into our mouths.  Every time we eat he watches and makes the reach in to grab our food. A couple times he's grabbed food and tried to put it in his mouth. Usually it's followed by me sweeping my finger into his mouth to get the pieces and crumbs out.  He licked a Mum-Mum cookie until it melted into tiny pieces in his hands. He's really showing so much interest to eat which keeps us so motivated to keep trying.


The weather has been better for us getting out now.  Baby GL loves taking walks in his stroller.  There's so much stimulation outside for him.  The air is much fresher for his lungs, which makes me feel better.  After a long winter inside with stale air and an energetic child gets frustrating.  We, as parents, are healthier now to get out with Baby GL.  My husband just carries him around the neighborhood and gets that time to bond with him outside.  


Some things we're working on in Speech therapy is recognizing words and objects.  The therapist will hold up 2 toys, say the name of one of them and try to get Baby GL to grab the corresponding toy.  He likes the game, but when he picks the wrong one she takes it away and I think he gets a little confused.  It's all a process, though. PT and OT have just been thrilled about his progress.  He's much looser in the torso. He's reaching to grab his feet and twisting and turning to reach his toys all around him.  It's really great to see so much progress.  Hopefully the weight will then catch up with that progress.  


We did have our one year pediatrician visit last week.  We were 2 months late, that was my fault.  It actually worked out well because it gave him 2 more months to get bigger for the 3 shots he got for his vaccines.  Of course that was followed by a fever into the next day which made him miserable all day.  On top of teething we had a long week of whimpering.  It breaks your heart to know your child is so uncomfortable.  However, it also pulls at your patience because your left not knowing how to comfort your child.  I think it's a day to day practice that will probably never get better, I just hope I will progressing grow my patience, though.  

So I've been asked many times about having a second child.  It's a difficult question to answer.  I would love to have another child that is just like Baby GL. He's been such a blessing to us.  My husband fears that he won't be able to love another child as much as he loves Baby GL.  My fears are, of course, what are the chances this will happen again.  I think we'd be terrible parents if we made a choice to put another child through this.  Even though Baby GL has been a miracle and a great success already, I think it will be a while before we'd decide about a brother or sister for Baby GL.

HUGE WEEKEND!!!

We have had a great week.  On Wednesday, Baby GL went in for his first testosterone shot in preparation for his surgery in June.  It's always heartbreaking because he cries immediately.  This time it was followed by vomiting his breakfast on the nurse.  Note to self, don't feed a chid before a painful shot.  He recovered quickly at least.  


Our biggest news this week was on Friday.  Baby GL finally sprouted his first tooth.   He's 14 months old, just about 11 months corrected so I think it's perfect timing.  Everyone wanted to feel it but he is so particular about what gets close to his mouth.  He locks those lips so tight you can't get anything in.  It takes some trickery to get your finger in.  You can just feel the tip of a sharp tooth on the lower left front.  I was jumping for joy.  It actually put together how he's been feeling this week.


Today was my 2nd Mother's Day, 1st Mother's Day with Baby GL home.  He gave me the best present.  This morning I caught him rolling over from his back onto his tummy, then lunging forward to reach something.  HUGE accomplishment.  Therapy has been working on him rolling over for a while and when you put him on his tummy he just rolls off onto his back.  For him to do this on his own is really showing how much he's growing.  


Later this evening I caught him fully rolled over onto his tummy, reaching for the remote control that was on the floor.  He wasn't in reach of it see he was making attempts to get his knees under him, but he wouldn't quite push himself up onto his hands.  He whined and cried the whole way, slowly inching forward in a wiggly motion until he finally quit to cry.  He was satisfied when I picked him up and gave him the remote.  Just like a typical man, give him his remote.  He gets crazy excited for the computer, too.  My nephew was encouraged to crawl with the remote control, as well.  What motivates these kids just makes me wonder.  


I don't think I could've asked for a better Mother's Day.  I know that there are many more to come and that each one will be more and more special because of Baby GL.

March for Our Babies

We've continued on our feeding trials and formula smoothies.  The squash becomes somewhat of an issue when we have to tube feed.  I've found many orange stains on blankets and bedding which is very difficult to get out.  I guess it's worth it because this week we have a visit back to Children's Hospital and I'm determined to have had a considerable weight gain.  We've been mixing it up a bit by adding squash, sweet potato, raspberry/pear mix, applesauce or juice and this morning we tried peaches.  Baby GL took a couple spoons of the peaches with an expression of interest.  However, he still pierces those lips tight when he doesn't want something in his mouth.  That includes his bottle.  He's actually not been in the mood to eat the last few days, which makes it difficult to get 21-24 ounces into him.  He's had a runny noise so I think he's coming off a cold.  Hopefully, once he's through that he'll get his appetite back.

For the last two months I have been fundraising for our local March of Dimes walk and we were successful is raising over $700.  So in honor of the babies we bundled up and walked this last Saturday.  It turned out to be a pretty nice day.  NO RAIN!!!!!!  For the first time in years, I think, we had a dry day.  It was still quite chilly, but we bundled both my son and nephew up in the Bob stroller. Baby GL was sweating, he was bundled so well.  It was wonderful to see all the children that beat all the challenges they came across as preemies and even some that were full term, but were ill at birth.  It's a wonderful cause to support.  I actually just completed my training with the Parent to Parent program with March of Dimes.  We starting a Chair Yoga class for the NICU parents and families.  I'm very excited about it and I'm hoping parents will respond positively to it.  While I was there training and discussing the new class I visited the NICU again.  It's amazing to see how tiny the babies are and it's so difficult to remember Baby GL that small.  So many beautiful miracles.



This weekend sparked a new beginning for Baby GL.  I officially moved him into his own bedroom.  I was nervous not to be so close to him, but I felt it was the best decision.  We have our video monitor so I was comforted in the thought of being able to see him.  It was a good night.  He slept well and we slept well.  We are reaching these milestones that really show us how much older Baby GL is getting.  


My husband had been getting Baby GL to stand.  He sets him up against the ottoman and he reaches for whatever is in front of him.  His favorite game is to push buttons on the laptop.  He's become so used to talking to his grandparents via Skype that he just loves the computer.  Unfortunately, e pushed some buttons that reset some things on my laptop that I don't know how to get back.  Genius, I think.  He's still a bit unsteady on his feet.  He keeps his legs locked and if he tries to turn or bend he loses it.  He's very determined, though.  


We're preparing for Baby GL's surgery coming up in June.  He'll have his first injection of testosterone this week.  I'm hoping there won't be any crazy side affects.  We'll have our second one in 3 weeks, then his surgery 3 weeks after that.  We've spoken with the Hypertension specialist and once his surgery is completed we will start therapy with a new med for his Pulmonary Hypertension.  Even though he didn't think the med would compete with the testosterone he felt it best not to overload Baby GL.  


I'm thrilled to move into spring now with Baby GL.  He loves his stroller so we are hoping for more warm weather.  Our day to day is becoming more normalized, which feels so wonderful.  A huge relief for us.  He'll continue to get his therapies, now 4 times a week, speech and OT once and PT twice.  He's made so much progress.  He tries daily to reach his toes.  He gets to his pant legs and pulls and sometimes gets his ankles.  I think one day he'll just get it.   

Squash Smoothies

It's been a very emotional couple weeks for me as a mother.  I can say that at a moment when you feel like everything is on the upswing, everything can change in a quick moment.  Baby GL is doing great, no worries there.  We did have a couple clinic visits last week that created a lot of stress, so much so that I actually got a spring cold that I'm still trying to recover from. 


Our first clinic was the eye clinic.  Last time we visited was when the doctor cleared Baby GL for ROP, meaning no need for laser eye surgery.  That alone was great news.  This visit was actually quite promising, also.  The doctor confirmed that Baby GL will probably need glasses.  However, she won't need to see him now for a year.  Between ENT and the eye clinic, that's 2 less clinics we have to put on calendar for now.  Our next clinic visit was a whole another story.


We had our routine visit to GI, Gastroenterology.  I usually feel pretty stressed at these appointments, but this time it just broke me down completely.  First we spoke to the Nutritionist.  She said Baby GL is gaining weight, average 12 grams a day, but it's not quite as much as they would like to see.  She asked me questions about his feedings and as I explained our routine she just gave me this look of disappointment.  Why didn't I have a better schedule?  Why wasn't I fattening him up with proper amounts of vegetable oil?  What a terrible mother! That wasn't even compared to the way the doctor made me feel.  He came in again with the look of disappointment because Baby GL is well below average on the growth chart.  He wanted me to give him our daily routine broken down to the hour.  How much he eats, what he eats, how he eats.  He's a baby.  What baby is on a routine hour by hour unless he's hospitalized.  Baby GL is 13 months old.  He bounces, he plays, and we feel lucky when we are able to get food into him and then follow up with a dirty diaper.  Well, apparently that's not good enough.


The GI doctor is still very concerned about Baby GL aspirating on his feedings.  To my understanding, after speaking with our Pulmonologist, there was no sign of residual food in his lung seen by his CT scan so we should keep feeding as we've been doing.  Well, once again I am a terrible mother.  The GI disagreed.  He said there is no way to tell if the aspiration is doing permanent damage.  So I ask what was the purpose of the CT?  My understanding was that we did the CT to see if the aspiration was an issue.  Again, I must be wrong.  GI believes that we need to be primarily G-tube feeding Baby GL.  Even consider going back to the G/J-tube that caused so many problems back in the fall.  He had the audacity to talk to me about surgery on his stomach.  So what do we do?  Do we continue to risk damaging our son's lungs which in the future could mean a lung transplant, according to the GI?  How do you tube feed a child that, when awake, is in constant movement.  It's a battle.  The more we tube feed the more he vomits.  So that brings the idea back for the G/J-tube that feeds him directly to the intestine, bypassing the stomach completely as well as avoiding oral feeding.  Baby GL is not a vegetable.  He recognizes a bottle and reaches for it when he's hungry.  How do you take that away from a child?


So now I struggle with the choice of what to do.  How do you choose?  We've been making great progress with our array of therapies and the GI doctor wants us to move backwards.  Well, his treatment was to tell us that Baby GL must take in 21-24 ounces of formula a day.  That is quite an increase from what we've been getting into him the last few weeks.  We can't go back to overnight feeds because then he doesn't sleep.  Luckily, Baby GL has been hungry lately and he'll take 12-15 ounces orally.  However, is that too much orally?  He doesn't sleep enough for us to tube feed more than maybe 10 ounces.  His naps are not very long and he'll wake up when he feels the sensation of food entering his tummy.  How do other parents do it?  They manage to feed their babies when they're hungry and naturally they decide to agree to spoon feeding.  Why do we have so many problems?  Not all parents have swallow studies so how do they know if their children are aspirating?  I guess they wait until their child gets sick.


I got angry.  I decided to prove that GI wrong and get Baby GL to grow.  So now I mix squash smoothies.  Surprisingly, squash and sweet potato will smoothly mix with formula so that it can be given out of a bottle.  It also is smooth enough to be fed through the g-tube.  I am determined to give my son the nutrition he needs and get him to grow to prove to that GI that I am a good mother and we can do things without cutting my son's stomach open again.  He already has 2 scars on his tummy and a third once the g-tube is removed.  We'll continue to mix these "smoothies" until Baby GL agrees to feeding him by spoon.  He will sit and eat the food off his toys and use the spoon himself, but it's never enough.  So until he takes a spoon from us he'll get it in any other way we can give it to him.  What do other parents do in this situation?  Maybe these situations aren't common.


This week we saw the Cardio clinic.  I had prepared myself for a cardio catheter, but I guess I misunderstood. We actually ended up meeting Pulmonary Hypertension doctor. Apparently, the cardio catheter is very invasive so it's not something they will do right now.  The doctor basically explained that the echo shows signs of increased pressure due to the ASD, hole in his heart.  Without the cardio catheter he can't say how much pressure is present.  The pressure can actually cause Baby Gl to not grow productively so that could be one of the cause of his slowly growth.  He also saw the CT scan and there definitely is evidence of scarring on his lungs.  Its difficult to say if any of it is permanent.  Unfortunately, he agreed that the aspirating can continue to do more damage, which I know, but we still are unclear what we should do.


His treatment is to remain on the O2 and he wants to add some meds.  The meds have some side affects that could cause some issue with his surgery coming up in June.  One of the side affects for boys is the possibility for erections.  Well, starting in May Baby GL will be getting 2 rounds of testosterone in preparation for his surgery for his hypospadias, which is on his penis.  Due to the fact that we don't want to cause our son to have a 6-week erection with all the meds stacked on top of one another we're waiting to hear back from the doctor before we would start any new meds.  I know in years to come Baby GL will be yelling at me for discussing this via the web.  Oh well, it's the joys of being a parent, embarrassing stories about your child.


Baby GL's most current weight is 13lbs 13oz, length was about 25.25 inches.  The length is never very accurate due to each clinic doing measurements using different techniques and Baby GL being finicky about straightening his legs to get measured.  Baby GL's corrected age is 10.5 months.  I know he's small for his age, but I think any growth at this point is a huge accomplishment from his frail 1lb body he began with.  We will continue to do what we can as parents. 

One warm day

This week has been Baby GL has been making great strides in therapy.  Speech therapy has been giving me ideas on how to get Baby GL interested in eating.  So we have taken some time to cover the floor, put on the bib, and sit in the Bumbo chair.  With a plate filled with baby food I put a spoon and some teething rings.  It seemed to work well.  Baby GL put the baby rings and spoon in his mouth and he had no choice but to get some of the food in there, too.  I expected a puckered face and some gagging, but it did it very happily to my surprise.  We've tried it a few times and it seems to be getting better each time.  Last time I tried to add in some spoon feeds by me but was stopped by Baby GL's hand grabbing the spoon. He actually put the spoon in his mouth then and it was the correct end of the spoon not the back end of it.  It will take time, but I'm seeing progress.


Physical and Occupational therapy has seen some progress in his stiffness.  Even I have noticed a lot more mobility in his torso.  He has been sleeping more on his side now, which normally he'd sprawl out, arms wide, in his crib.  He twists and turns more freely and shows more interest in reaching forward and sitting up.  We're working on getting him comfortable on his tummy still.  The therapists usually put him on his hands and knees and have him rock back and forth.  He seems to tolerated it really well.  Once he's done the head hits the floor and he looks like he's about to hit a head stand.  Baby GL just shows us, daily, how he's taking everything at his own pace.


We've made huge strides with my husband.  We actually went out to dinner as a family last week.  He's been the one to really be afraid of taking Baby GL out into public places so I was very proud that he wanted to go out.  It was really nice.  We attempted to get him in a high chair but he wouldn't stay in it.  He prefers to be in our lap, anyway.  He'll actually sit better in our lap.  In the high chair he just slid forward and arched his back.  The high chair cover was no help.


Our only clinic visit last week was to the Ear, Nose and Throat doctor.  He reminded me of something I had completely forgotten about.  Baby GL has a cyst removed from his vocal cords months back.  He was talking about it and it sounded to foreign to me.  I couldn't believe I had such selective memories.  It wasn't even an issue, but it was brought up.  The doctor actually let us off his service at this point.  There are not concerns so he feels there's no need for the follow-ups.  One less clinic to try to keep track of.  Makes my scheduling easier.

We had another first this weekend.  Baby GL finally got to play outside.  We put his bouncer on the patio and he played in only his onesie and pair of socks.  The socks would be due to his father. He just can't get to the socks being off yet.  When he's not looking I usually take them off.  The weather was perfect for him.  He bounced with a gentle wind blowing in his hair.  Just can't wait until summer when we get to go out everyday for walks and maybe even try swimming!

A mother's courage

There hasn't been anything crazy exciting happening this last week.  My husband returned form his trip and I think Baby GL really missed his father.  Baby GL ha really taken to talking on Skype with family. He is so entertained by the computer.  We put his Baby Signing Time video in the computer for him to watch from his chair.  My parents get such a kick out of watching his reactions.  My father has actually given him a nickname.  He calls Baby GL "Goober".  I guess it's a kind of peanut.  Who knows.  The funny thing is that Baby GL actually responds to "Goober"  and just shows a huge smile when my father talks to him.  I'm still not sure how to feel about that.  I am excited to see my parents take such a huge role in his life.  My mother is actually picking up the sign language and attempting to teach my nephew some signing.  

So I discovered that once you find yourself having a child born to the NICU doors open to other families going through very similar situations.  I came across a mother who just recently lost her son to a year long battle with the same issues Baby GL had.  The same only in the sense that both her son and Baby GL were born with Intrauterine Growth Restriction.  The doctors begin to talk to you about chances of life and disabilities that could occur as early as birth.  So far, Baby GL has been successful is beating many major issues thus far.  My heart goes out to the many families that have to endure the heartbreak of losing a child.  This mother wrote so honestly and with so much courage and so I want to share a piece of her latest entry.

"There is a strange part of me that feels like the last year was just one big nightmare that I finally woke up from. I sometimes feel like none of it really happened and that I am still 20 weeks pregnant looking forward to the future of my second baby. Unfortunately, when I look down I am not pregnant, when I look up I see my son's picture on the mantle with his ashes and I have to accept that it was our reality. Every day since he was born, to cope with him being away from me in the hospital, I have always brought him with us. I carry him in my arms while he is nursing, I pick his car seat up and put him in the car, I place him in the bathtub next to Viola, I put him in the grocery cart next to Viola and tell them to stop picking on each other, I lay him down beside me every night and wake up with him every morning.....Every single day I have lived in this alternative reality, even more so now that he is gone. I am sure I will be grieving the rest of my life, but I also remind myself that I have so much to still live for, to be grateful for, and although I will never be the same, like I taught Viola a while ago when she used to fall down, I am ready to "take a deep breath, pick myself up, dust myself off, and start all over again".............." -Donna Mossholder, Mi-cro called life

Therapy

So this weekend has been a lot of therapy.  Tuesday is Speech therapy day.  Our therapist came and I was wondering what she was going to with him.  She actually had him go in front of a mirror and she was trying to have him recognize himself.  I'm guessing from there she will get him to look at himself as he talks.  That, I'm sure, is farther down the line.  

We rented Baby Signing Time from the library to see if Baby GL would like it.  He sits in his Bumbo chair, in front of the computer and we play the video for him.  There is plenty of music and singing that it keeps his attention.  My mother and I have learned a lot from watching babies sign. It's really a great way to stimulate Baby GL's learning and communication skills.  I hope to continues liking it. The computer is not a new thing for Baby GL.  He talks to his grandparents daily in Albania through Skype.  Now that Daddy is there he talks to him and loves the interaction.

So today we had more therapy.  We met the Occupational therapist today.  She worked on his tummy time and his ability to cross the midline of his body.  That crossing and coming to the midline stimulates the left brain/right brain action which he needs to keep developing all his movements.  

Physical therapy was today, also.  We made sure to have a good nap in between.  She worked on many of the same thing as OT.  Still working on tummy time and reaching, side to side, front to back.  He gets so frustrated mid way through, but he's such a trooper.  As we've already known, his hamstrings are really tight which makes it difficult to sit up.  Those muscles force him to scoot his butt under himself so he would rather lay back than lean forward. We'll be working on our yoga together to work on that.  The nice thing about therapy is that he'll nap really well after. 

Baby GL has continually shown us how well he holds things. When he's hungry he'll grab for his bottle and bring it to his mouth. Since we use a heavy glass bottle I transferred some into one of the small bottles the therapists used in the hospital.  He did so great.  He took it to his mouth and held it there.  Then he let go and kept sucking as it flailed in the air like a pacifier.  It's progress.  

Something we've been working on over the last week was transitioning him on his feedings.  He was on 3.5 ounces of milk/formula 6 times a day.  So to avoid the late night feeding we tried 4.25 ounces 5 times a day to see how he'd do.  I was pleasantly surprised that he's done great with it. His first bottle is around 8am, sometimes earlier.  His last bottle is not 8pm, rather than 11pm.  We had a few stumbles getting there.  Increasing his feedings by that much took Baby GL a little while to get used to.  We've gotten really good at feeding him by his g-tube the moment he falls asleep to keep up.  Not a lot of vomiting so I think we've been quite successful.  I'm hoping to stay on this momentum of progress and work more into his spoon feedings.