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.