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.