Walking on Sunshine

My updates have been very few lately which makes me a bad blogger.  It's an interesting transition from when I was emotionally required to update daily because there was so much information to remember.  That was the original idea behind documenting my son's progress. I wanted to remember.  There were so many milestones and precious moments that get pushed aside by the more emotional memories.  Lately the memory of my son's 8th day of life has been lingering in my mind.  

The first days in the NICU the doctors say the first 7 days are the the most critical.  I'm not sure I agree with that.  The first 7 days were like walking on a frozen lake on a warm day.  You weren't sure if it was safe but you took the risk anyway. Maybe while you walked on the ice it made you nervous but it still supported you until you made it to solid ground.  Maybe it's a silly metaphor but the anxiety you feel in your body is very similar, or so it was for me.  Gianluca did as most children do in their first 7 days.  It was the 8th day that will remain in my mind for many years to come.  

At 21 months of age, corrected he would be almost 18 months, he amazes us. I think that's why that horrible day stays as a reminder for me to not take any moment with my son for granted.  It's been very difficult the last few months while I've been working full time.  I never had the desire to be a working mom.  Unfortunately, the economy calls me to work.  At least we are blessed with my family and opposite work schedules that Gianluca can stay at home safely during the flu season to receive his home therapy.  

The last month has be an incredible journey of walking for Gianluca.  I've missed a lot of those first steps.  It's when I get home that my husband stops me and sets Gianluca on his feet and shows me what he's done that day.  Emotions of sadness and excitement swell inside me at those moments.  The wonderful feeling is that since I'm not home as much, Gianluca seems to prefer being with me when I'm home.  

Gianluca knows when the front door opens.  Even if we're quiet he can hear the squeak of the hinge and he pauses to try to focus on who is walking through the door.  When he sees it's me he smiles ear to ear and wiggles his way over either crawling or now walking. Once he reaches me he pulls at my pants to have me lift him up.  Interestingly enough, I don't get a welcome home kiss, I get the excited smack on the face. Oh well, I take what I can get.  He then carries on about his day with cute baby murmuring.  It's just amazing.  What would have come of our family if we would have made the other decision on that 8th day to not continue to save him?  We would have missed out on the last 20 months of pure joy.  It will be an ongoing process to release the guilt I still feel from even considering the thought of "pulling the plug".  I can't imagine how parents, who have endured the loss of a child, begin the healing process.

On a happier note, Gianluca is walking now.  We had some rough night with a new molar that popped up this month but the walking has made up for the sleepless nights.  He thinks its a game to walk across the room.  From the couch to the toy box to the ottoman back to the toy box, it goes on and on.  The laughter just fills us full every time he does it.  Now he'll work on getting up from the floor to walking.  Right now he can only find his balance starting out from a standing position maybe from the support of the furniture or from us holding his hand.  First comes the stumbling walk next the running down the hall.  Can't wait!
 

Tiny Feet Giant Smiles: World Prematurity Day

Tiny Feet Giant Smiles: World Prematurity Day: World Prematurity Day Honor the million babies worldwide who died this year because they were born too soon, and the 12 million more...

World Prematurity Day

World Prematurity Day

Honor the million babies worldwide who died this year because they were born too soon, and the 12 million more who struggle to survive. November 17 is World Prematurity Day and when we focus everyone’s attention on the serious problem of premature birth.

“Like” World Prematurity Day on Facebook. Read stories from around the world and share your own. Help spread the word by updating your Facebook status with a message on premature birth. Together we can raise awareness of this serious problem and help more babies start healthy lives.

Walking

Just as he begins to fall, it's a classic "uh oh" face.
What's better than Daddy?  My cell phone.

Sliding fun

How quickly he learned to crawl up the slide and slide sown all on his own.  We only just put this up today.

First Steps

Our life is on the move.  Since our eye assessment I've been assertive in searching for a new eye doctor for Baby GL.  I feel that I have left some of the issues on the back burner while other things have been made to be more important.  I trusted that the doctors were giving me all the information that I needed.  Come to find out that there were complete strangers that new my son's eye diagnosis before I even did.  That's from an appointment we had in the early spring.  Not acceptable.  We need doctors that will take the time to talk to us and not just be a 2 dimensional person on paper.  I'm extremely disappointed in how that system is working, and that's at Children's Hospital.  Well, I just hope the new doctor will give us a plan. I believe that eye sight is just as important as weight gain and feeding issues.  By the way, latest weight is 16lbs 1oz.  We haven't done a height in a while so I'll have to do that for next post.

Speaking of feeding issues, we still continue to struggle with Baby GL's appetite.  He immediately swings his head to the side and pierces his lips closed when he sees food.  Once we get the first bite in he seems to get the idea, but he definitely has no interested in it.  A bottle isn't as bad.  He'll snack on his bottle all day.  Especially in the evening and before bedtime.  I have a feeling that Baby GL will have some issues with food when he's older just with he way we have to force it in him.  His G-tube will probably be with him for a while.  Along with that will be his O2 at night and we are being pressured about his medication.  One in particular, the Viagra.  We stopped the dosage due to him vomiting a lot and have slowly been introducing it again.  We just stared giving the 3rd dose now after being pressured by the Pulmonary Hypertension team.  I know they mean well, but they haven't a clue what it is to live with a vomiting issues.  It's become so much part of our feeding ritual.  We have the routine down on how to make the smallest mess.  Not a habit I was dreaming about when I was thinking about being a parent.


On the flip side we have been enjoying the Autumn season.  My sister and I took the kids for a quick trip to the pumpkin farm.  My older nephew ran around like he just ate a pound of candy.  At 2 he's not brave enough to go up onto the play set and down the slide alone.  He really didn't care about the pumpkins. Baby GL wasn't too thrilled, either.  I think he was more upset that I woke him from a nap to go.  I'll post some picks with the pumpkins.  You'll see how little interest he has in being there.  The newest member, my baby nephew, his joy came from crying.  This kid has a set of lungs on him.  I really feel quite blessed that my son has more of a horse cry. I will take that any day over the piercing screams.  My brother-in-law even agreed with that.

Babcia, Baby GL and I just went to the apple orchard for picking.  I always look forward to that.  He went with us last year but he was too small to do anything but be in his stroller.  This time around he was not happy sticking it out in the stroller.  He actually sat on the grass while we buried ourselves in the apple trees. He was having fun playing with the stroller straps and I gave him an apple to "chew" on.  He has 4 teeth now so he gets those teeth marks in the apple, then he throws it.  He's got the best throw I've ever seen from a baby.  With these outdoor adventures comes dressing for the weather.  We are back to the hat battle. How do you get these kids to keep their hats on?  I think we'll be trying hat and hood so it's harder to pull off.  I've bought more leg warmers, too.  I LOVE baby leg warmers.  Besides being cute they are so helpful as an extra layer on the legs. And if he gets to warm leg warmers, so do I.  Gotta love the fashion come backs.


So, now we get to the biggest news.  Baby GL took his first steps yesterday.  It's bitter sweet because I wasn't there to see the first steps.  My husband made sure it was the first thing I saw when I got home form work, though.  It's only a few steps then a tumble, but it's such great progress.  Baby GL is on the move now.  He is not afraid to crawl anywhere, pull up on anything, and walk across anything that will hold him.  One of my latest Craigslist finds is a kids trampoline.  It's great for toddlers.  Baby GL is a little small for it but he doesn't let that get in his way.  I like to think the trampoline is what got him to take those first steps.  He will freely crawl over to it, limb on to it, which is great because it's easily set higher than his waist.  Once he's up he goes to the handle and walks his way up to standing to jump.  The handle is taller than he his, but still within reaching distance.  It's so cute to watch him jump.  He gets the biggest smile on his face.  For that face I will turn my whole living room into a playroom.


Since I've been writing this I've been asking my son's name just for personal reasons, but I feel so proud that I want to share him with the world.  We battle with a name at the beginning but my heart was warmed when we named him Gianluca Valentin.  He is our strong and rave little man that is proving to the world that the doctors can be wrong.  He survived and is growing to be a perfect, playful little boy.

Eye assessment

Today, Baby GL is officially 19 months old.  It' funny to count the months as they go by.  I'm trying to remember what has happened over the last month and it's hard to remember.  We've been adjusting to a new schedule with me working full-time again.  I get the evenings while my husband takes the mornings.  It's actually been nice getting my husband to try to adjust to Baby GL's needs.  He has to be the one to make sure he gets his meals and naps and even therapy.  It can really get complicated.  I have to say he's doing a pretty good job.  He's even made it to the doctor's appointments.


We are still battling the "failure to thrive" issue.  We've found that instead of driving ourselves crazy trying to stuff Baby Gl, we're really following his lead.  We've always done that, but know we're following a little more strict diet.  I've made attempts to make baby food and it's been pretty successful.  By successful, I mean, he eats it.  He's still particular on texture, but I think he's warming up to trying different things.  Our consistencies have been fatty yogurt and giving him as much formula as he'll drink.  The formula we're on is very high calorie so if he's drinking well through the day then we should get some great weight on him. The last weight taken was already a couple weeks back but he did finally break 16lbs.  He was maybe 16.4lbs.  We have a couple appointments next week so we'll get an updated weight and I'm hoping for a height, too.


The few things that are memorable for me this month actually include Baby GL having a cold.  He had the nastiest part of his cold during a weekend, which was good because he was miserable.  I was worried that with his congestion he would have breathing issues.  His breathing issues included lots of crying.  He would fuss every couple hours so I decided just to have him come sleep in our bed until my husband came home from work.  He still woke up early the next day.  We were good for nearly a week when we had another episode of late night crying.  It turned into a slumber party in mommy and daddy's bed.  He wasn't settling down by himself so I brought him in bed.  It's funny how sleeping with a baby is like sleeping with a dog.  First, he crawls to the top of the bed.  Not happy up there he maneuver's his way towards the bottom of the bed.  Flip flop, he finally finds a spot to lay, while mommy and daddy hang on tight the edge of the bed.  Double feature the following night.


So today we finally had our vision assessment that has been rescheduled twice.  It was really informative.  We had someone from Wisconsin Center for the Blind come out and actually assess how Baby GL sees.  We know he can see, but it was hard to know what he sees.  His official sight diagnosis from his eye doctor is near sighted in one eye and far sighted in the other.  He still has issues with nystagmus, which means his eyes dont' settle, they have a slight giggle when he's looking around. This is well known in preemies that had ROP.  One thing that was brought to light today was how he focuses.  I never to notice to Baby GL turning his head slightly to the left when he was looking at something.  In order to focus he needs to find that nul point.  It's a point where he is able to find focus between both eyes.  I've noticed the tilt in his head before but I never realized that it was Baby GL compensating for his vision.  We got some great tips on how to stimulate him.  We were even educated on what type of sunglasses to get him.  It was one assessment that was actually very educational for us.  


Baby GL is continuing to grow at an amazing pace.  Soon I will be writing about how he's walking.  Right now I'm just enjoying our small accomplishments.  I'm not in a hurry to have him walking.  He does get up to his walker now and cruises across the room with ease so I think walking is just around the corner.  I think it's important for us to live for the moment.  Even the sleepless night are memorable for me so Id hate to forget them.

Failure to Thrive

I realize I left everyone hanging not updating since our hospital visit.  Baby GL came home as expected on the Friday before Labor Day weekend.  He gained some weight during his stay which seemed to satisfy the doctors.  I still feel that the hospital stay was unnecessary.  There were other ways to accomplish what they needed without sticking my son is a small hospital room with no where go to go.  Had they thought it through and known about the MRSA situation I can only hope they wouldn't have done that to him.  Now we have to go through another round of three negative results to not be put in isolation if every there is another hospital visit.  We thought we had two negatives but then he ended up positive this last time around.  Just the icing on the cake, I guess.  


Once Baby GL was home he seemed to adjust back to his schedule.  We are still experiencing daily vomiting fits.  Something we are experimenting with is taking him off the viagra meds we started for his heart a few weeks back.  I'm wondering if that adds some sensitivity to his stomach.  Baby GL will vomit just seeing that spoon coming near him.  I really don't think that's a natural reaction. The goal coming out of the hospital was to get Baby GL to eat 5 jars of food or yogurt with a teaspoon of oil added to each, 16 ounces of Compleat Pediatric, as well as 4 ounces of whole milk.  So far we've only been successful with 3 jars of food or yogurt and maybe the full amount of liquids.  He's just so small you hate to stuff him because it will just come right back up.  It's a constant struggle.


On the contrary to Baby GL's weigh issues, his energy is as excitable as can be.  He resists naps, he jumps and crawls around at any given moment and will not sit still at any point during the day.  Even when he sleeps he manages to roll around do much he wraps the oxygen cord around him so many times it comes off the oxygen tank.  I've woken up to the whooshing sound coming from the tank after he's pulled it off.  Usually that would be a sign that it's time to come off the oxygen.  The doctors don't seem to see it that way.  They actually thought adding one more cord, a feeding pump, was a great decision.  Sure, why not.  Let's never get sleep because we'll be up all night unwrapping our son.


I still have a lot of hostility towards the doctors after this last hospital stay.  The doctors diagnosed Baby Gl as "failure to thrive".  I've heard other babies being diagnosed as such.  However, when you hear that about your own child you start to question everything.  Most of the time I just think about how that should really be called something else.  If my son was "failing to thrive" why would he be crawling around, giggling, walking, rolling, talking, etc.  That to me is the definition of thriving.  He's alive, he's healthy and very happy.  Yes, he's small.  So let's plan the diet and stop defining it.  


Aside from all the crazy stuff we've actually found a lot of great times this week.  I took Baby GL's little baby pool out for him to play in.  He loves to play in the bath now, splashing around, standing up against the edge of the tub then sitting, then up again.  I figured the pool would be just as great. It was fun, but not the same effect.  We've been trying to play more with Baby GL's cousins and to take him around other people.  He's been experiencing a lot of separation anxiety.  It's not good when he doesn't even recognize his own grandparents.  


It's been another week of adjustments, to say the least.  We've begun t realize that this is how our life will continue.  I have no fears that Baby L won't catch up as he gets older.  The comical thing is that my 2 month old nephew wears the same size clothing as Baby GL, who is now 18 months old.  Well, so many parents wish their babies would stay babies longer.  I guess we get to experience that in real life.

One more day

We are expecting to stay one more night in the hospital.  It's been a frustrating battle with the doctors and nutritionist.  They want to give Baby GL an over abundance of extra calories to bump his growth.  For a child as active as him, it does make sense.  However, since we've been stuck in a small hospital room, Baby GL has had no interest to drink from a bottle.  Really getting him to take anything has been terribly difficult because he just can't be the same active child when there's no room to play.  The MRSA swab he had done ended up positive, which just means we have to start again to get the 3 negative swabs before he would be out of isolation in the even he would be hospitalized again.  The good news is that they plan to let us come home tomorrow.


Baby GL's new diet will now consist of 5 solid baby food feedings with one tsp of oil added to the baby food to boost calories.  We then will keep the 2 cans of Compleat Nutrition and 4 ounces of whole milk.  It's a challenge to be on this diet in the hospital.  It's just unrealistic in this setting.  I think that if they really wanted an accurate judgement of how he uses his calories and how much he can tolerate they should've had a nurse come to our home for observation.  We had a home nurse when Baby GL first came home.  I'm sure it was possible to do.  The only thing was that they wanted lab work done to see the function of the kidneys, liver, etc. to make sure the diet wasn't harming his body.  It really is a high calorie count for the average child.  


I could be one of those very optimistic parents and say how wonderful it has been learning about my son's body and feeding habits.  however, it's difficult to be optimistic when you have to take your son out of his home, away from what he's used to, and start poking at him every couple hours.  Since Baby GL was born I have learned a tremendous amount about how to give him the best care and how to read his signs.  I consider myself the expert being his mother.  I just don't understand why doctors can't trust us moms when we  tell them something will not work for our children.  I'm lucky we got the diet we did.  The nurse was suggesting we tube feed while he sits in a high chair.  Is there a 17 month old child out there that sits still in his high chair?  Not my son.  She also suggested having Baby GL wear a backpack with a pump to pump formula in through his tube.  The same pump we used when he was much younger.  The pump backpack is half his size.  There is no possible was he would continue a normal life with that.  I really don't know how these people can make recommendations until they actually experience the care needed 24 hours a day.  Taking care and following the directions given from the doctor on patients for maybe an 8 hour shift is completely different from the care you give your own child.  It's just a frustrating scenario.  


Once again, the good news is that tomorrow our lives will go back to normal and we can get out baby home.  That is really where he needs to be.

Visit 3

One of the RNs at Waukesha NICU told me that on average these babies have 3 visits back to the hospital after going home.  Well, let's hope this is visit number 3 and the last one.  We had an appointment with Cardiology on Monday just to check in, get Baby Gl's weight and see how he was doing with his new feeding schedule.  Unfortunately, his weight was down so now they want to intervene.  The requested to admit Baby Gl into the hospital for a few days for observation to see if we could resolve his weight issues.  It was very emotion for my husband to think about our son going back into the hospital.  I think I handled it better because I knew it wasn't a trip starting with a call to 911.  The goal is just to observe and be able to bring him home before the weekend.


Yesterday, by about noon, we admitted Baby Gl in to Children's Hospital.  I think we've been spoiled in the past getting put into the new wing of the hospital so now that we have a room in the old wing we're a little disappointed.  I shouldn't complain.  It will just mean we want to come home that much sooner.  


Baby Gl is completely aware of his surroundings.  He knows he not at home and he knows these are not Mom and Dad coming in to check on him.  We've had to stay close by because he will just cry when we're not around.  His first day settling in was hard for him.  We went for dinner during his nap and of course didn't make it back before he woke up.  We found him in the arms of a care volunteer just crying away, which is usually what happens when we're not around.  It's heartbreaking, but it's difficult to be there ever second.  To put him down for a nap we have to hide behind the separation curtain and just wait.  He wines and wiggles around for quite awhile before he eventually settles in.  


Neither of us spent the night in the hospital.  We got Baby Gl to sleep and went home to sleep.  I made it back to the hospital before he work up, however, he had been awakens a few times earlier from labs coming through and the nurses fussing.  He even vomited during the night right at the last bit of his tube feeding with the nurse.  That wasn't anything new for us.  We had found that tube feeding has to be minimal or he won't tolerate any longer.  It's a battle because he needs to eat but when he doesn't take enough by bottle we have to get it in somewhere.


So today the regime is to get 24 ounces of this Compleat Pediatric rather than the 16 we've been aiming for.  I don't know that we'll do it by mouth, but we'll hope.  Everything else will remain the same.  The nurses and nutrition are following closely.  His weight as of Monday was 6.76 kilos, 14.87lbs.  Today the nurse weighed him and he was up at 6.93 kilos, 15.25lbs.  We know he can gain weight it's just keeping the weight on and figuring what diet works well for him.  The doctor came through with a theory that maybe he's constipated which would cause him not to eat.  Well, I can say I agree since I changed 3 dirty diapers in 2 hours already today.  I guess we'll just humor him and let him rule constipation out on his own.


The one thing making us feel very trapped here is that Baby Gl needs to be under isolation.  Back in January, when he was hospitalized, he tested positive for MRSA.  I guess it's highly contagious and he needs 3 negative test results before they will let him out of isolation when he's hospitalized.  He had 1 negative result back during his surgery in June and now they are doing a 2nd test.  With him in isolation we have to stay in the room.  We've had to bring toys in and let him explore the hospital room only.  He's surprisingly fine with it.  We were given a bouncer today for him to play in.  He doesn't play with one at him now but he likes to play and walk around the outside of them so I think it will entertain him.  It's only a few days.  We can tolerate a few days.  Hopefully by the time they release him they will have the answers we all need to get Baby Gl growing.

Hoping for Growth

It has been so long since I last updated.  Our month has been terribly busy.  Baby Gl continues to keep us on our toes. He made it through hi sear infection and things have gone pretty much back to normal.  We've been jumping around over this issue on his growth.  It's an interesting topic.  When you see Baby GL he looks like a very health little boy.  Very active crawling around, walking along furniture, puling himself up on anything he can and even crawling up stairs now.  You would think nothing was wrong.  Well, the clinic appointments just don't get better.


A couple weeks ago Baby Gl had an echo performed to look at his ASD, hole in his heart.  They were trying to measure a general amount of how much pressure is being put on his heart.  The Pulmonary Hypertension specialist believes there's enough to medicate and to keep the O2.  The O2 only needs to be on at night, really for the reason than unless Baby Gl wears his own O2 backpack there's no way to keep it on.  Another change was to add another medication which is basically Viagra.  That took some convincing from the doctor with the insurance company to approve that medicine.  To my understanding Viagra helps to lower blood pressure and do other therapy for the heart.  However, the side effects are still as we all know Viagra to be.  He hasn't seemed to change his mood on the new med.  I have noticed him kissing a lot more, usually girls.


So with that same appointment we were advised to speak with the nutritionist that works with the cardiology department.  We know that the Pediasure was never something we were successful with.  The nutritionist actually put together a whole new diet based on how we were already feeding Baby GL.  In place of 24 ounces of Pediasure we are now trying Compleat Pediatric.  It is made of real meat and vegetables dehydrated and processed in a liquid form.  At first I wasn't thrilled because the ingredients still contain corn and soy.  At this point those are two ingredients I'd like to keep my son off of until later in life.  Since we have no other choice we have given it a try and the side effects are much better compared to Pediasure.  His diet now consists of 16 ounces of this new formula, 4 ounces of Organic whole milk, 3 full meals of baby food with the addition of 1tsp of olive oil to eat meal for extra calories, as well as any other fluids like juice or water he he's needing it.  We've done well, except he will get full every once in a while, which he shows up with vomiting his whole meal.  We just can't win. It's a process.


It's been a very long time, but we had a whole family outing this weekend.  On Sunday the three of us, my sister's whole family, and my parents all went to the zoo.  It was KidsReach Foundation Day so the ticket sales went for a good cause.  It was a perfect day for the zoo.  I don't think Baby Gl really knew where we were, but we'll have pictures to show him when he's older.  It was just so wonderful to have a good day as a family.  We couldn't escape the daily challenges of feeding Baby Gl, but for the most of the day he was thrilled to be with out.  


It's amazing to see how much Baby Gl has progressed even over these last few weeks.  He moves, without hesitation, all over our home.  Now he's crawling up stairs, in and out of rooms, and climbing up whatever he can find.  His verbalizations have gotten so much better an clearer.  He's testing new sounds and getting louder.  He knows his name and whole Mom and Dad are and even know what a ball is and where it is in the room.  He's even begun to get incredible needy.  When I or my husband leave him, or just leave a room sometimes he begins to cry.  I'm not sure if it's because I've taken on more work.  Even if he goes with my mother he cries.  I'm hoping it's a stage.  It could just be his new tooth he has popping out on top that's causing him grief.  Either way, it's nice to feel so loved and needed.  It just breaks my heart to hear him cry.

First Ear Infection

July brought more work for me and my husband.  I took some extra work, temporarily, that has made us adjust to a new schedule.  It's really taken more work for my husband because he someone who normally sleeps late and leave much of our son's care to me.  It was quite eye opening and has been a great experience for him to experience what I do on a daily basis.  He needed to be awake with Baby GL early, sometimes 5:30am.  He was in charge of making sure Baby GL was fed, bathed, clothed and ready for therapy.  Therapy happens 4 times a week so that was a new schedule to try to remember.  He never knew if someone would be knocking on our door.  It was entertaining to watch, and I hoped he gained a better respect for me.  


There were two appointments at Children's Hospital clinic that he was responsible for getting him to.  That was an interesting outcome.  The first one was with the Neonatal Development Clinic.  We had an evaluation done back in January where they bring in PT, OT, and speech and do an overall evaluation of his development milestones.  Back in July he was put in the range of a 5 month old baby, speech more n the 2-3 month old.  His size still remains in the less than 3%.  


So this time around, my husband got to be the one to watch them "evaluate".  He took their comments very personally.  When you put a child in an unknown room with new toys and new people he's not going to "perform" the way he does in the comforts of home.  My husband found himself trying to convince the team of Baby Gl's skills.  When ever he wouldn't respond to something they tried to get him to do, my husband would jump in and get him to do it.  Then there was shock as if it was so surprising that he wouldn't want to play with strangers.  One thing that really frustrated my husband was when they tried to get him to color.  I don't know many 1 year old than can color so we found that to be a little strange.  I've never even thought of giving Baby GL a crayon.  I know where it would go, in his mouth, then lost forever somewhere in the toy box.  


His overall progress puts him in the 10-11 months old range, which is great since his corrected age was 13 months during the visit.  Within the 6 months since the last eval he's made tremendous progress.  Who could be disappointed in that.  There was still a concern about his weight.  At the visit he wighed 14lbs 11 oz which is down from his prior weights.  In my last entry I wrote about Baby GL being put on Pediasure.  Well, after 2 weeks I began to notice side affects, the one that stood out the most was his terrible breath.  The smell continued in his diaper.  The worst smell.  After doing a little research I read other mothers whose children developed thrush on Pediasure due to the sugar content.  That explains the bad breath immediately.  At that point began cutting the Pediasure with whole milk, about half and half.  The bad breath went away immediately.  However, the developmental team thought I was being a bad mother, maybe not, but the whole milk mixture doesn't have enough calories and they actually recommended going beyond the 24oz of Pediasure we were already giving.  My husband, being a husband, never included the detail about the thrush in the explanation of why we changed his diet.  No problem.  I'm great at ignoring people's bad advice.


So now Baby GL's diet includes his mixed milk cocktail and he still continues to get 3 meals spoon fed, fruit and veg.  That's when my husband remembers that the baby needs to eat.  I continued to do more research on weight gain for babies and found a mother that was introduced to Brown Rice Protein.  I found it at our local health food store and added it to my sons daily diet.  I add it to his milk, which is nothing new to the rice cereal we typically add.  I add it to his fruits and veg, as well as high fatty yogurt that he loves.  The final addition to his diet was olive oil.  I went back to added oil during his nightly tube feeding.  It's pure fat which is what he needs to gain weight. 


I think we are making progress.  He had another clinic appointment last week in the Genetics clinic and he gain a few ounces.  Not much, but it's slow progress.  That was another appointment my husband had to get him to.  It was an early one at 8:30am, which was difficult because he was then going into work for 12 hours.  I had my mother meet him to take Baby GL so he could go to work.  Once again, he needs to experience motherhood as we all live it.  


Genetics was actually pleased with Baby GL.  After a brief evaluation they found nothing that stands out as abnormal in him.  The only thing was his fingernails.  They kind of curl up at the end, which I think is due to the fact that he grabs and pinches everything he touches.  I think he'll grow out of it.  My husband and mother were very relieve to get news like that.  The Genetics team would, eventually, like to get some x-rays to look at his bones, but they see no concern to do it now.  That would be a lot of stress on him.


Overall, the month has brought nothing but great progress in Baby GL.  He's growing and exploring so much everyday.  He's really starting crawling all around.  He follows us to the bathroom, kitchen and everywhere else. When my husband is grooming himself in the bathroom, Baby GL has to be there at the bathroom door watching.  We now have to really watch where we step because we'll never known where he'll pop up.  I can;t leave him out of my sight for any amount of time now.  He's regressed to back scooting again.  I think he can scoot super fast now on his back and thinks it's fun.  Well, on his back he can fit under furniture, including the couch.  I found him stuck between the wall and the couch one afternoon.  I had to move the couch to get at him.  He just entertains himself all day long.  He's just thrilled to have places to crawl, toys to play with and a mirror to make out with.  That's super cute!  I keep a long mirror against the chair and he spends all day crawling up to it to give the baby a kiss.  He LOVES babies.  My sister just had a baby and he gives that little guy kiss after kiss.  Even the babies on the diaper boxes.  Every once in a while I'll get a kiss, but it's not a frequent.  


Well, that pretty much bring us to today.  I took him to the doctor concerned about a cold that he may have developed over the weekend.  A cold is not something I'd normally be concerned about, except this one was causing him to vomit many times throughout the day.  It's hard to gain weight when you can't keep anything down.  Turns out, Baby GL has his first ear infection.  It struck me as a surprise.  There were no signs.  The only other time he had ear issues was when he perforated an eardrum during his hospital stay at Christmas.  That was caused by bronchiolitis he had.  He really started to show how much his ear was bothering him after the appointment.  He was very needy and whiny, which is not normal for him.  I put him t bed early today, knowing he was getting the medicine for the infection.  Hopefully in five days he'll be back to his happy self and keeping his food down.  When he gets sick, it's funny how I do more laundry.  

Gaining weight?

We've had a pretty busy couple of weeks.  Baby GL is adjusting very well to the new place.  At the same time he had to spend a few nights at Grandma's while we were working some late nights.  He really loved it.  There's a lot more space to crawl and move around over there.  He's made great strides crawling.  My family loves to entice him to crawl with a remote control or a cell phone.  He will choose the electronic devices over any other toys in his direction.  Even this morning he managed to crawl and pull up on the ottoman to pull down the remote.  Before that he bypassed his ball for my cell phone.  I just hope that his interest turns into a great job someday.  Now that he's moving around so much he's getting more balanced and stronger.  Something PT has been working on is getting him up to sitting on his own.  He can now crawl, stop, sit up, and continue to crawl.  He'll then bring himself over to anything he can pull himself up to.  Soon he'll take off walking.


On Friday we had an appointment with Pulmonary.  It's been a while since we've had a clinic visit so it felt strange going in to the hospital.  I knew what we were going to hear.  Last week we did his pulse-ox test overnight to measure his oxygen saturations.  I noticed the numbers were low so I could only assume the answer was to keep him on the O2.  Sure enough, it was.  His saturations were actually within normal ranges for a normal child.  However, a child with lung disease and pulmonary hypertension, the doctors want better saturations.  So for now he will remain on the O2, at least until we get onto a medication for the pulmonary hypertension.  We are going in within the next few weeks for another echo to get a general measurement of the pressure on his heart.  Once they decide to medicate then we could probably move away from the O2.


Prior to any appointment we get Baby GL's weight and height.  He absolutely hates it.  He's such a big boy now that he sat on the big scale that everyone else stands on.  Unfortunately, we found he has lost weight.  At the time of his surgery back in June he was about 15 and 1/2 lbs.  As of Friday he was only 15lbs 1 oz.  His weight loss is not something the doctors want to see.  His height wasn't accurate.  The best they could get was 24.5 inches, which I know he's much taller but he screams and thrusts his body around that we can't get an accurate measurement.  We've known for a while now that his weight has been a struggle.  He's been getting the same formula, Neosure, for nearly a year.  He began on breast milk, but it was fortified with the Neosure and since Christmas he's been strictly on 27 cal Neosure.  He is eating fruits and vegetables pretty well 3 times a day.  His activity level is so high that it's just not enough.  A normal 1 year old would be getting off formula and moving to milk.  Baby GL is not eating enough to move in that direction, though.  So instead he's moved to Pediasure.  I was a little leery of it because typically it's recommended for 24 months and older.  It is more calories, 30 over the 27 we were giving him with the Neosure.  We just have to see if it will be enough.


Baby GL has been on the Pediasure for the weekend now and he seems to like it.  We don't have to thicken it with cereal, which is nice.  It comes already premixed so there's no messy powder to deal with.  I can't complain about that. The only thing I don't like is that Pediasure only comes flavored, which means extra sugar.  We chose to stick to the vanilla for now.  I don't think we'll ever try the chocolate or strawberry.  I just can't help thinking it will be too much sugar in his system.  Well, at least he's eating.  If he grows faster he may move to more solid food, giving him the opportunity to get off so much of the Pediasure. A nice side affect of the Pediasure is that Baby GL smells like vanilla all the time.   I'm going to assume it's from the random spills that land on his clothes, etc.  It just makes me want to cuddle with him more.

New Place

It has been such a long week.  Baby GL left his first home and we moved into a new place.  We consider it cleaner and more "social" with the distance to parks and places to walk. He took the move very well, but he definitely knew we were not in the same place.  He was actually a little scared looking around and not recognizing where he was at.  Lately, Baby GL has really noticed the different places we go.  He will get very clingy when he not sure about a place.  Clingy and then he'll try to climb up you which there's no higher point than having him wrap around my neck and shoulders.  It just shows how much he's grown.  He continues to show he has the curiosity and intelligence of a 15 month old, but the body of maybe an 8 month old.


Baby GL has been making great strides within the last week.  He has started crawling.  It's a little unstable, still, but he manages to get where he needs to go.  H's even made it over to the bathroom knowing his daddy was in there.  He doesn't let anything be an obstacle for him.  It will take a little more time before he's really taking off crawling.  Something else he's learned to do, which is a little dangerous for us now, is stand in his crib.  I stood him up in his crib the other day just to see what he'd do and he was so excited.  Well, no he's figured out how to get up there on his own.  I found him there this morning.  Now we have to lower to mattress.  He's really been impressing us so much these last few weeks.  He's just at that point where he's bursting out of his "baby" shell and moving into being a toddler.


I'm starting to think that writing about Baby GL's accomplishments may be boring for anyone but us.  After everything we've seen and been through it's just been so exciting to witness everything he does.  I think the moment he takes some bigger chance eating will be a huge milestone.  He has 2 teeth on the bottom.  It's hard to get in there to see if anymore are pooping out.  He has the desire to eat, not just his fruit and veg.  I was eating a muffin and he started to excessively swallow and grabbed my muffin out of my hand.  The desire is there to eat more, but when we give him and of the dissolving rice baby snacks, he chokes when he gets a piece on is tongue.  He will attack a MUM MUM like a champ but then he can't swallow anything that gets in his mouth.  He just licks it and sucks on it until it falls apart into tiny mushy pieces.  We'll have to keep waiting for him to get just a bit bigger, I think.

Video Conversation with Baby GL

See a Video with Baby GL

First trip

Baby GL recovered very quickly from surgery.  He was up and playing around by Wednesday without any problems.  By Thursday we were able to give him his bath and he was already healing very well.  Baths are so much fun now because he's sitting up now.  He'll hold on to the front rail in the bath chair so I don't have to lay him back anymore.  I tried to get him to play in the water and splash around.  He's not really interested in that yet.  He laughed with me a little, but he's not sure about the splashing and playing in the water.  He's not just sitting up in the tub now, he sits up to play and he sat up really well in the shopping cart.  He holds the front handle like a big boy.  He's a little unsteady when he twists, but can sit up and lean forward to play with toys.  


This weekend was PolishFest in Milwaukee so my sister and nephew came with Baby GL and I on Friday night.  He wasn't thrilled with the loud Polka music. He is still very sensitive to loud noises and aside from crying he'll try to climb up into our shoulder and snuggle his head in our neck for protection.  It feels really nice as a parent but we know he's not happy.  As long as we moved far enough away he was fine.  We could hear it enough to dance a little and he loved that.  We were able to visit with family and shop for a great Polish t-shirt to add to his wardrobe.  


So we took our first little outing together as a family this weekend.  I decided it was a good time to have my husband take off work and go away for the weekend.  His birthday was last week and then we had father's day this weekend.  We were invited to a wedding in Madison so I thought it was perfect.  We planned to spend some time at the zoo on Saturday, but we got there too late and most of the animals we already packing in for the day.  It was fine, my husband and I enjoyed a nice dinner out while Baby GL slept in the stroller.  Later we went to the wedding for a little while.  The music, once again, was a little too loud for him so we didn't stay long.  


Sunday morning, Baby GL and I took a morning dip in the pool.  It was his first time.  I had tried a few weeks back putting him in a little kid pool outside, but he was very nervous and wouldn't let go of me.  This time I thought it would be better since I was going in with him.  He did really well.  We, again, were dealing with loud noise from some kids.  The screams and loud splashing echos inside.  It was still good to get him in a feel the water.  I'm hoping to get him swimming while he's still young so he's not afraid of the water.  We'll have to hope for some better weather so we can get him in the lake in his little floaty.

Since it was Father's Day we went out for a nice breakfast, which once again Baby GL enjoyed a snooze in the stroller after playing for a bit in a highchair.  He's not terribly thrilled with the restaurant style highchairs yet.  We traveled up to Devil's Lake and then into Wisconsin Dells to just get out and show my husband something he's not yet seen.  Something he's never done before is play mini golf so we had to do that.  We put Baby GL in the back carrier and played 18.  It was a blast.  I really could feel the wonderful energy as a family that we've lacked for so long while dealing with hospital visits and being stuck at home all winter. We've had too many gloomy days and this was one that was relaxed and full of laughter.  I don't think we could've asked for a better day.  

Day After Surgery

It was an emotional day for both myself and my husband.  The emotions hit my husband harder.  It was a little deja vu in the same waiting room that we were in during Baby GL's 7 hour long hernia surgery months ago.  The nerves just take over while you wait.  


Before Baby GL went in he was given Versed, a light sedative to prevent any memories of surgery and prep.  It made him very drowsiness and loopy.  He was kind of in slow motion, which was actually really funny to see.  I feel better knowing that he won't remember the experience.  


After the surgery was done, which was actually quite quickly, the doctor came out to discuss what happened.  The original plan was to repair the Hypospadias and a catheter would go in while healing and a week later it would be removed.  However, the doctor found that Baby GL's urethra was as thin as tissue paper not making it strong enough for the catheter.  It actually made it a little harder for the repair.  He will grow up with a slight Hypospadias but not enough to be noticeable.  With the tissue so delicate he couldn't repair the urethra all the way to the end as was supposed to be done.  He reassured me that functionally, I will have my grandchildren in the future and as far as locker room issues go, there will be no embarrassments.  I'm not sure how I felt when he mentioned grandchildren.  I still have a baby, I don't want to think about the "process" of making grandchildren when I look at my son.  It will be a thought in my mind now that will take time to forget.


Baby GL went into surgery the same was we found him after surgery, awake and wiggly.  During surgery they did have to intubate him, but it was so wonderful to know they extubated right away without complications.  We had to stay in recovery while the nurses watched his vitals.  Some side affects we were watching for we vomiting, irritability, fever, etc.  In order to be discharged we had to get something into Baby GL's tummy.  So we started with apple juice.  Apparently he was very hungry.  He attacked the bottle.  Unfortunately, he didn't drink enough.  He's not great at taken juice because he's used to his thickened formula.  SO in order to get out of there we had to settle him and tube feed some Pedialyte.  It was a success.  We got to the hospital at 11am and were able to go home by 6pm.  I think it was a good day.


Our order at home were to not submerge the surgical area in a bath until day 3.  Since a catheter wasn't placed they used a type of tape that is like sticky cling wrap to wrap around the surgical area.  Slowly the tape will give and fall off.  It actually is almost all off today.  We were to watch for bleeding, which hasn't been an issues.  For pain we were given a prescription pain killer that we didn't need to fill.  Tylenol has been enough.  The worst part of today was when Baby GL was trying to have a bowel movement.  He cried for at least 30 minutes.  I think between the Tylenol and the crying he just got tired out and fell asleep.  It's heartbreaking to see your child in pain and not be able to do much about it.


The rest of the day Baby GL has been a champ.  Playing as usual, back to normal feeds, sleeping comfortably.  We are staying away from the bouncer for a little while.  Nothing that sits between his legs for obvious reasons.  


It's amazing to see kids heal from surgery and hospital stays.  Adults would be vegetables, lazy and whiny.  Not these little guys.  Children bounce back so much faster than we do.  Isn't that sad to say.  Baby GL is doing so well, he's holding his bottle better than he's ever done and bouncing around at table piano never missing a beat.  He fills our heart with so much love an joy.

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.