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.
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.
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.
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.
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.
