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.
Sunday, May 8, 2011
Monday, May 2, 2011
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.
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.
Wednesday, April 20, 2011
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.
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.
Monday, April 11, 2011
One warm day
This week has been Baby GL has been making great strides in therapy. Speech therapy has been giving me ideas on how to get Baby GL interested in eating. So we have taken some time to cover the floor, put on the bib, and sit in the Bumbo chair. With a plate filled with baby food I put a spoon and some teething rings. It seemed to work well. Baby GL put the baby rings and spoon in his mouth and he had no choice but to get some of the food in there, too. I expected a puckered face and some gagging, but it did it very happily to my surprise. We've tried it a few times and it seems to be getting better each time. Last time I tried to add in some spoon feeds by me but was stopped by Baby GL's hand grabbing the spoon. He actually put the spoon in his mouth then and it was the correct end of the spoon not the back end of it. It will take time, but I'm seeing progress.
Physical and Occupational therapy has seen some progress in his stiffness. Even I have noticed a lot more mobility in his torso. He has been sleeping more on his side now, which normally he'd sprawl out, arms wide, in his crib. He twists and turns more freely and shows more interest in reaching forward and sitting up. We're working on getting him comfortable on his tummy still. The therapists usually put him on his hands and knees and have him rock back and forth. He seems to tolerated it really well. Once he's done the head hits the floor and he looks like he's about to hit a head stand. Baby GL just shows us, daily, how he's taking everything at his own pace.
We've made huge strides with my husband. We actually went out to dinner as a family last week. He's been the one to really be afraid of taking Baby GL out into public places so I was very proud that he wanted to go out. It was really nice. We attempted to get him in a high chair but he wouldn't stay in it. He prefers to be in our lap, anyway. He'll actually sit better in our lap. In the high chair he just slid forward and arched his back. The high chair cover was no help.
Our only clinic visit last week was to the Ear, Nose and Throat doctor. He reminded me of something I had completely forgotten about. Baby GL has a cyst removed from his vocal cords months back. He was talking about it and it sounded to foreign to me. I couldn't believe I had such selective memories. It wasn't even an issue, but it was brought up. The doctor actually let us off his service at this point. There are not concerns so he feels there's no need for the follow-ups. One less clinic to try to keep track of. Makes my scheduling easier.
We had another first this weekend. Baby GL finally got to play outside. We put his bouncer on the patio and he played in only his onesie and pair of socks. The socks would be due to his father. He just can't get to the socks being off yet. When he's not looking I usually take them off. The weather was perfect for him. He bounced with a gentle wind blowing in his hair. Just can't wait until summer when we get to go out everyday for walks and maybe even try swimming!
Physical and Occupational therapy has seen some progress in his stiffness. Even I have noticed a lot more mobility in his torso. He has been sleeping more on his side now, which normally he'd sprawl out, arms wide, in his crib. He twists and turns more freely and shows more interest in reaching forward and sitting up. We're working on getting him comfortable on his tummy still. The therapists usually put him on his hands and knees and have him rock back and forth. He seems to tolerated it really well. Once he's done the head hits the floor and he looks like he's about to hit a head stand. Baby GL just shows us, daily, how he's taking everything at his own pace.
We've made huge strides with my husband. We actually went out to dinner as a family last week. He's been the one to really be afraid of taking Baby GL out into public places so I was very proud that he wanted to go out. It was really nice. We attempted to get him in a high chair but he wouldn't stay in it. He prefers to be in our lap, anyway. He'll actually sit better in our lap. In the high chair he just slid forward and arched his back. The high chair cover was no help.
Our only clinic visit last week was to the Ear, Nose and Throat doctor. He reminded me of something I had completely forgotten about. Baby GL has a cyst removed from his vocal cords months back. He was talking about it and it sounded to foreign to me. I couldn't believe I had such selective memories. It wasn't even an issue, but it was brought up. The doctor actually let us off his service at this point. There are not concerns so he feels there's no need for the follow-ups. One less clinic to try to keep track of. Makes my scheduling easier.
Sunday, April 3, 2011
A mother's courage
There hasn't been anything crazy exciting happening this last week. My husband returned form his trip and I think Baby GL really missed his father. Baby GL ha really taken to talking on Skype with family. He is so entertained by the computer. We put his Baby Signing Time video in the computer for him to watch from his chair. My parents get such a kick out of watching his reactions. My father has actually given him a nickname. He calls Baby GL "Goober". I guess it's a kind of peanut. Who knows. The funny thing is that Baby GL actually responds to "Goober" and just shows a huge smile when my father talks to him. I'm still not sure how to feel about that. I am excited to see my parents take such a huge role in his life. My mother is actually picking up the sign language and attempting to teach my nephew some signing.
So I discovered that once you find yourself having a child born to the NICU doors open to other families going through very similar situations. I came across a mother who just recently lost her son to a year long battle with the same issues Baby GL had. The same only in the sense that both her son and Baby GL were born with Intrauterine Growth Restriction. The doctors begin to talk to you about chances of life and disabilities that could occur as early as birth. So far, Baby GL has been successful is beating many major issues thus far. My heart goes out to the many families that have to endure the heartbreak of losing a child. This mother wrote so honestly and with so much courage and so I want to share a piece of her latest entry.
"There is a strange part of me that feels like the last year was just one big nightmare that I finally woke up from. I sometimes feel like none of it really happened and that I am still 20 weeks pregnant looking forward to the future of my second baby. Unfortunately, when I look down I am not pregnant, when I look up I see my son's picture on the mantle with his ashes and I have to accept that it was our reality. Every day since he was born, to cope with him being away from me in the hospital, I have always brought him with us. I carry him in my arms while he is nursing, I pick his car seat up and put him in the car, I place him in the bathtub next to Viola, I put him in the grocery cart next to Viola and tell them to stop picking on each other, I lay him down beside me every night and wake up with him every morning.....Every single day I have lived in this alternative reality, even more so now that he is gone. I am sure I will be grieving the rest of my life, but I also remind myself that I have so much to still live for, to be grateful for, and although I will never be the same, like I taught Viola a while ago when she used to fall down, I am ready to "take a deep breath, pick myself up, dust myself off, and start all over again".............." -Donna Mossholder, Mi-cro called life
Friday, March 25, 2011
Therapy
So this weekend has been a lot of therapy. Tuesday is Speech therapy day. Our therapist came and I was wondering what she was going to with him. She actually had him go in front of a mirror and she was trying to have him recognize himself. I'm guessing from there she will get him to look at himself as he talks. That, I'm sure, is farther down the line.
We rented Baby Signing Time from the library to see if Baby GL would like it. He sits in his Bumbo chair, in front of the computer and we play the video for him. There is plenty of music and singing that it keeps his attention. My mother and I have learned a lot from watching babies sign. It's really a great way to stimulate Baby GL's learning and communication skills. I hope to continues liking it. The computer is not a new thing for Baby GL. He talks to his grandparents daily in Albania through Skype. Now that Daddy is there he talks to him and loves the interaction.
So today we had more therapy. We met the Occupational therapist today. She worked on his tummy time and his ability to cross the midline of his body. That crossing and coming to the midline stimulates the left brain/right brain action which he needs to keep developing all his movements.
Physical therapy was today, also. We made sure to have a good nap in between. She worked on many of the same thing as OT. Still working on tummy time and reaching, side to side, front to back. He gets so frustrated mid way through, but he's such a trooper. As we've already known, his hamstrings are really tight which makes it difficult to sit up. Those muscles force him to scoot his butt under himself so he would rather lay back than lean forward. We'll be working on our yoga together to work on that. The nice thing about therapy is that he'll nap really well after.
Baby GL has continually shown us how well he holds things. When he's hungry he'll grab for his bottle and bring it to his mouth. Since we use a heavy glass bottle I transferred some into one of the small bottles the therapists used in the hospital. He did so great. He took it to his mouth and held it there. Then he let go and kept sucking as it flailed in the air like a pacifier. It's progress.
Something we've been working on over the last week was transitioning him on his feedings. He was on 3.5 ounces of milk/formula 6 times a day. So to avoid the late night feeding we tried 4.25 ounces 5 times a day to see how he'd do. I was pleasantly surprised that he's done great with it. His first bottle is around 8am, sometimes earlier. His last bottle is not 8pm, rather than 11pm. We had a few stumbles getting there. Increasing his feedings by that much took Baby GL a little while to get used to. We've gotten really good at feeding him by his g-tube the moment he falls asleep to keep up. Not a lot of vomiting so I think we've been quite successful. I'm hoping to stay on this momentum of progress and work more into his spoon feedings.
We rented Baby Signing Time from the library to see if Baby GL would like it. He sits in his Bumbo chair, in front of the computer and we play the video for him. There is plenty of music and singing that it keeps his attention. My mother and I have learned a lot from watching babies sign. It's really a great way to stimulate Baby GL's learning and communication skills. I hope to continues liking it. The computer is not a new thing for Baby GL. He talks to his grandparents daily in Albania through Skype. Now that Daddy is there he talks to him and loves the interaction.
So today we had more therapy. We met the Occupational therapist today. She worked on his tummy time and his ability to cross the midline of his body. That crossing and coming to the midline stimulates the left brain/right brain action which he needs to keep developing all his movements.
Physical therapy was today, also. We made sure to have a good nap in between. She worked on many of the same thing as OT. Still working on tummy time and reaching, side to side, front to back. He gets so frustrated mid way through, but he's such a trooper. As we've already known, his hamstrings are really tight which makes it difficult to sit up. Those muscles force him to scoot his butt under himself so he would rather lay back than lean forward. We'll be working on our yoga together to work on that. The nice thing about therapy is that he'll nap really well after.
Baby GL has continually shown us how well he holds things. When he's hungry he'll grab for his bottle and bring it to his mouth. Since we use a heavy glass bottle I transferred some into one of the small bottles the therapists used in the hospital. He did so great. He took it to his mouth and held it there. Then he let go and kept sucking as it flailed in the air like a pacifier. It's progress.
Something we've been working on over the last week was transitioning him on his feedings. He was on 3.5 ounces of milk/formula 6 times a day. So to avoid the late night feeding we tried 4.25 ounces 5 times a day to see how he'd do. I was pleasantly surprised that he's done great with it. His first bottle is around 8am, sometimes earlier. His last bottle is not 8pm, rather than 11pm. We had a few stumbles getting there. Increasing his feedings by that much took Baby GL a little while to get used to. We've gotten really good at feeding him by his g-tube the moment he falls asleep to keep up. Not a lot of vomiting so I think we've been quite successful. I'm hoping to stay on this momentum of progress and work more into his spoon feedings.
Sunday, March 20, 2011
O2 still on board
This week we had the echo and CT scan done as planned. The CT scan showed the normal patterns that preemie lungs show. With time they will repair themselves. There wasn't any evidence that the feedings were causing harm to his lungs. So in my mind that was good news to keep feeding as we've done. The echo on his heart showed that the hole in his heart is actually getting a little smaller which would mean it may repair itself. However, there is evidence elevated pressure due to the hole. Because of that he will continue wearing the oxygen. I guess it works as a kind medication keeping the elevated pressure under control. We've been referred to see a new clinic for Pulmonary Hypertension. When we see that doctor he may try a medication that would allow Baby GL to be taken off the O2. For now we wait.
Speech came this week. It was our first visit from the Speech therapist from Heath Reach which is the outsourced therapy we decided to go to over doing Birth to 3. The therapy will be a little more consistent and aggressive for him. I'm not sure what we'll be doing with speech, but she did give us some information on beginning sign language with Baby GL. She commented that many children react positively to using sign language. That has been a small project now that I'm working on. If anyone has suggestions for teaching sign language I'd love the help!
We also were visited by Physical Therapy this week. Due to Baby GL's health issues we qualify for home visits, which I prefer until we get fully out of flu season. The PT working Baby GL hard, which was good to see. He is very stubborn now. He doesn't last more than 2 seconds on his tummy until he rolls over. In fact, he begins the rolling once he sees he going to his tummy. She pushed him to stay on his tummy. He shows signs of wanted to move around on his back. When he needs to get somewhere he moves backwards so now we need to work on the crawling. She also working on him sitting up which he's not thrilled with, either. After her visit he took a great nap.
It was a busy week. On top of all that we fit in a visit to a new clinic, Urology. We need to have his Hypospadias repaired. This is when the urethra is on the underside, rather than the end of the penis. The doctor feels he's better off having the repair done now while he's young rather than waiting until he's older. The process will include 2 testosterone injections. One done 6 weeks prior to surgery, the 2nd 3 weeks prior. Can't wait to see how his attitude changes with excess testosterone in his system. The surgery itself will take about under 3 hours and should be able to come home the same day. If, by some chance, there's a little hiccup in his recovery he may stay a night.
Baby GL's next couple weeks will be planned as a vacation to Grandma and Grandpa's house. My husband left to visit family for 2 weeks and I teach early classes so instead of waking Baby GL early to take him to Grandma, better he stays the night and I do the traveling around. He seems to love the stimulation, but hates the loud noises. It's good for him to get the exposure of louder noises because he still startles easily.
I think for this week our only appointments are with therapy. We do have more clinic visit coming. With the weather getting nicer it's been so much easier getting him around. We even took our first walk of the spring season this week. He loved it. He's been trying out his new umbrella stroller. Amazing how big he is now.
Speech came this week. It was our first visit from the Speech therapist from Heath Reach which is the outsourced therapy we decided to go to over doing Birth to 3. The therapy will be a little more consistent and aggressive for him. I'm not sure what we'll be doing with speech, but she did give us some information on beginning sign language with Baby GL. She commented that many children react positively to using sign language. That has been a small project now that I'm working on. If anyone has suggestions for teaching sign language I'd love the help!
We also were visited by Physical Therapy this week. Due to Baby GL's health issues we qualify for home visits, which I prefer until we get fully out of flu season. The PT working Baby GL hard, which was good to see. He is very stubborn now. He doesn't last more than 2 seconds on his tummy until he rolls over. In fact, he begins the rolling once he sees he going to his tummy. She pushed him to stay on his tummy. He shows signs of wanted to move around on his back. When he needs to get somewhere he moves backwards so now we need to work on the crawling. She also working on him sitting up which he's not thrilled with, either. After her visit he took a great nap.
It was a busy week. On top of all that we fit in a visit to a new clinic, Urology. We need to have his Hypospadias repaired. This is when the urethra is on the underside, rather than the end of the penis. The doctor feels he's better off having the repair done now while he's young rather than waiting until he's older. The process will include 2 testosterone injections. One done 6 weeks prior to surgery, the 2nd 3 weeks prior. Can't wait to see how his attitude changes with excess testosterone in his system. The surgery itself will take about under 3 hours and should be able to come home the same day. If, by some chance, there's a little hiccup in his recovery he may stay a night.
Baby GL's next couple weeks will be planned as a vacation to Grandma and Grandpa's house. My husband left to visit family for 2 weeks and I teach early classes so instead of waking Baby GL early to take him to Grandma, better he stays the night and I do the traveling around. He seems to love the stimulation, but hates the loud noises. It's good for him to get the exposure of louder noises because he still startles easily.
I think for this week our only appointments are with therapy. We do have more clinic visit coming. With the weather getting nicer it's been so much easier getting him around. We even took our first walk of the spring season this week. He loved it. He's been trying out his new umbrella stroller. Amazing how big he is now.
Friday, March 11, 2011
Vulnerability
We had a visit from the nurse on Wednesday. Baby GL received his last Synergist shot. Hallelujah, flu season is almost done! He always cries with that shot. I don't blame him because the needle is very long and I'm sure it hurts him. The nurse weighed and measured him and wow did we have a great week. His current weight is 13lbs 11oz, she measured his height at 23 3/4 inches. The height always differs depending on how well he sits still. Baby GL's weight gain was excellent this month, over a pound gained since the last nurse visit. If we stay on this momentum he's catch up to his age in no time.
I officially shifted his clothes around. No more newborn clothes. We are into the 0-3 and 3 month clothing now. It's always bittersweet putting away clothes. I battle wanting him to stay small so I can cuddle him but yet I want him to grow so big to catch up.
Wednesday night I took Baby GL to church for Ash Wednesday. It was our first time going to church aside from his baptism. We made sure to sit in the "crying" room at the back. Makes sense to have a small room separated by glass so not to disturb the other patrons. There were actually 2 of these rooms and both were full and very noisy. At the moment we went to receive the ashes I got a little teary eyed. I went to the priest that performed his baptism and it just made me emotional to have both Baby GL and myself blessed. I thank goodness for each day that I have with him and I still after a year get so emotional about it.
Walking through the church with him in my arms and the oxygen on his face, I got the feeling that people were staring and I think I get that feeling a lot. It could be completely in my head, but we have, frequently, the curious questions of why he's on O2. So many people assume the worst of him because of the O2. Baby GL sees it as just another toy to play with and put in his mouth. He actually makes me feel better about the O2 when he chews on the cording.
So I'm making myself very vulnerable now. I feel it's important to talk about and I hope that there are others out there that feel the same that I do and maybe are afraid or nervous to talk about it. I've had moments of breakdown over the last few months. I know for myself that in moments of privacy the emotions swell up. Even when I'm driving down the street I remember back to the days when we didn't know the outcome of this journey. It doesn't take having a small baby in the NICU to feel overwhelmed in our lives. I don't want to label it as postpartum depression, but I wonder if it's something that can kick in even a year after giving birth.
We waited 6 months for our son to be released from the hospital and I know that my job during those 6 months were to be the support of our family. Just because my son came early and he didn't come home I still needed to continue with our life. There were things to be done, bills to pay, jobs to maintain, household duties that needed to get done to be prepared for our son's homecoming. I needed to be the one to reassure everyone that the outcome with be successful even though I was terrified to know what could have happened. Life never stopped, in fact it became busier, as any mother could testify to. Baby comes and life moves even faster.
Now that we have successfully made it to a year and we've seen such wonderful progress being made by Baby GL I feel all the emotions that I had to push deep down finding their way to the surface. I find it harder to get out of bed. I stand in the shower not wanting to get out. It's difficult to drag myself to get a workout in and it's simply easier to go to a fast food place to get myself a meal than to try to prepare one at home. I had to finally break down and open my husband's eyes to how I've been feeling and it wasn't easy. I don't want to be so vulnerable, I don't want to look weak. He was always the one that I allowed to be emotional while I stayed the rock. It was me who made the 911 call, it was me to talk to all the doctors, it was me to handle all "business". Now, I don't want anyone to think I'm saying anything negative about my husband. He tried many times to comfort me and even tried to get me out for a spa day, but I couldn't see spending the money when we needed to buy a highchair. He, just as myself, had to pick a roll and for myself it was easier to pick the roll of CEO. My name was on all the paperwork because I was the one that gave birth to our son so naturally the doctors and nurses contacted "Mom". Maybe I'm wrong, but believe many of us go through the struggles of knowing how to balance our roles and to take the time to care for ourselves. Our choice is usually to keep the emotion to ourselves and keep the household afloat. Unfortunately, we get to a point of breaking.
A year in and so much progress made, I can finally take a moment to breath. I'm not really breathing, though. His meds have decreased tremendously, he's healthy and shows signs of develop and I thrilled. So what makes my tears of joy and relief change to exhaustion and depression? I'm always hearing about these mothers on "happy pills". Do I need those? Maybe just a good martini.
So I'm not sure this was the best place to expose myself, but I think the more mothers show themselves as vulnerable become healthier mothers. No one knows the total package of how they child will grow and develop. Ours had a rough start and is showing us what a survivor he is. My feelings should be "phew, we're through the hard stuff". However, now I'm starting to over analyze. The idea of Autism is coming into my brain. How can you prevent it, how will you know if it's happening? Maybe it's not Autism, maybe it's something else. Will he walk, will he need glasses, what will happen after he's off O2 and he begins to struggle for air? Daily questions on a moving conveyor that never stops. The funny thing is that Baby GL knows only his life of playing, pooping, eating and sleeping. Oh the simple life. Right now, I'm watching Baby GL press the buttons repeatedly on his bouncer and when the music stops, he bounces and chews on his fingers and O2 cording. So then I wonder why do I do this to myself!
Until I can find a cure for motherhood, I think I settle for a cup of coffee and a comfy chair.
I officially shifted his clothes around. No more newborn clothes. We are into the 0-3 and 3 month clothing now. It's always bittersweet putting away clothes. I battle wanting him to stay small so I can cuddle him but yet I want him to grow so big to catch up.
Wednesday night I took Baby GL to church for Ash Wednesday. It was our first time going to church aside from his baptism. We made sure to sit in the "crying" room at the back. Makes sense to have a small room separated by glass so not to disturb the other patrons. There were actually 2 of these rooms and both were full and very noisy. At the moment we went to receive the ashes I got a little teary eyed. I went to the priest that performed his baptism and it just made me emotional to have both Baby GL and myself blessed. I thank goodness for each day that I have with him and I still after a year get so emotional about it.
Walking through the church with him in my arms and the oxygen on his face, I got the feeling that people were staring and I think I get that feeling a lot. It could be completely in my head, but we have, frequently, the curious questions of why he's on O2. So many people assume the worst of him because of the O2. Baby GL sees it as just another toy to play with and put in his mouth. He actually makes me feel better about the O2 when he chews on the cording.
So I'm making myself very vulnerable now. I feel it's important to talk about and I hope that there are others out there that feel the same that I do and maybe are afraid or nervous to talk about it. I've had moments of breakdown over the last few months. I know for myself that in moments of privacy the emotions swell up. Even when I'm driving down the street I remember back to the days when we didn't know the outcome of this journey. It doesn't take having a small baby in the NICU to feel overwhelmed in our lives. I don't want to label it as postpartum depression, but I wonder if it's something that can kick in even a year after giving birth.
We waited 6 months for our son to be released from the hospital and I know that my job during those 6 months were to be the support of our family. Just because my son came early and he didn't come home I still needed to continue with our life. There were things to be done, bills to pay, jobs to maintain, household duties that needed to get done to be prepared for our son's homecoming. I needed to be the one to reassure everyone that the outcome with be successful even though I was terrified to know what could have happened. Life never stopped, in fact it became busier, as any mother could testify to. Baby comes and life moves even faster.
Now that we have successfully made it to a year and we've seen such wonderful progress being made by Baby GL I feel all the emotions that I had to push deep down finding their way to the surface. I find it harder to get out of bed. I stand in the shower not wanting to get out. It's difficult to drag myself to get a workout in and it's simply easier to go to a fast food place to get myself a meal than to try to prepare one at home. I had to finally break down and open my husband's eyes to how I've been feeling and it wasn't easy. I don't want to be so vulnerable, I don't want to look weak. He was always the one that I allowed to be emotional while I stayed the rock. It was me who made the 911 call, it was me to talk to all the doctors, it was me to handle all "business". Now, I don't want anyone to think I'm saying anything negative about my husband. He tried many times to comfort me and even tried to get me out for a spa day, but I couldn't see spending the money when we needed to buy a highchair. He, just as myself, had to pick a roll and for myself it was easier to pick the roll of CEO. My name was on all the paperwork because I was the one that gave birth to our son so naturally the doctors and nurses contacted "Mom". Maybe I'm wrong, but believe many of us go through the struggles of knowing how to balance our roles and to take the time to care for ourselves. Our choice is usually to keep the emotion to ourselves and keep the household afloat. Unfortunately, we get to a point of breaking.
A year in and so much progress made, I can finally take a moment to breath. I'm not really breathing, though. His meds have decreased tremendously, he's healthy and shows signs of develop and I thrilled. So what makes my tears of joy and relief change to exhaustion and depression? I'm always hearing about these mothers on "happy pills". Do I need those? Maybe just a good martini.
So I'm not sure this was the best place to expose myself, but I think the more mothers show themselves as vulnerable become healthier mothers. No one knows the total package of how they child will grow and develop. Ours had a rough start and is showing us what a survivor he is. My feelings should be "phew, we're through the hard stuff". However, now I'm starting to over analyze. The idea of Autism is coming into my brain. How can you prevent it, how will you know if it's happening? Maybe it's not Autism, maybe it's something else. Will he walk, will he need glasses, what will happen after he's off O2 and he begins to struggle for air? Daily questions on a moving conveyor that never stops. The funny thing is that Baby GL knows only his life of playing, pooping, eating and sleeping. Oh the simple life. Right now, I'm watching Baby GL press the buttons repeatedly on his bouncer and when the music stops, he bounces and chews on his fingers and O2 cording. So then I wonder why do I do this to myself!
Until I can find a cure for motherhood, I think I settle for a cup of coffee and a comfy chair.
Tuesday, March 8, 2011
Happy Birthday
It was Baby Gl's 1st birthday this weekend. Since the whole family was away it was just us 3 together. I took Baby GL on Friday to have pictures done. It wasn't the most successful trip we've had. He is so distracted by the bright lights that he doesn't react to any of the funny faces and noises both myself and the photographer were doing. It preferred laying there with arms wide open with a very non-smiley face. The only was I could get him to react was to give him a toy in which he put in his mouth so many pictures were with something in his mouth. We tried to put him on his tummy and he wasn't having it. The photographer had to be very quick with her shots to get anything. In the end we did get some great shots. The most important picture I needed was one with my hands and his feet. One of his first pictures after birth was me holding his feet. I wanted to show how much he had grown. He went from my finger tips holding his feet to my thumb and index finger cupping his foot. Any other pictures were just extra from there.
One place I was excited to go was to my OB. I know what woman gets excited by this. Well, the appointment came at the perfect time being on Friday. She delivered Baby GL via emergency c-section and I remember her making it a point for me to see him before they took him into the NICU. We didn't know the outcome back then. Now, a year later she got to meet the big boy. It was exciting for her to meet the miracle she delivered.
Saturday, for Baby GL's birthday, I got him a couple baby balloons. Perfectly sized for him. No cake for him but I did put a little happy birthday decor on his bottle. He got a couple toys for his birthday, one being a piano, that would normally go on the side of his crib. However, Baby GL prefers it on the floor, under hid feet so he can bang on it and push the keys with his feet. I also got him a toy to stick on his new high chair that took me weeks to research and finally buy to have it on backorder. Oh well. He won't know the difference if it came now or later. Who knows if he'll even like being in a high chair.
Aside from his birthday we've been working on getting him through a cold and cough. The schmutzy nose is pretty much cleared up but we're still battling the cough. We've turned back to nebulizer to give him the Albuterol treatments. It's a little more effective over the inhaler. We wait until he's asleep so that he won't fight it. The inhaler has become a battle to give him now. He turned 1 and now he's got an attitude. He's always called the shots from day one so I guess it's not any different than normal.
This week we have a visit from the nurse to deliver Baby GL's final Synergist shot. It's a sign we're getting out of flu season and spring is coming. We have another appointment this week, but I honestly am not sure which department we're going to. It's in my calendar so I know I need to go.
Other things coming up will be his CT scan on his lungs. He'll need sedation for that which is never something I like thinking about. He'll also be having an echo on his heart next week. Once again we'll have to have sedation for that. At least both tests are brief.
Thank you to everyone who have offered your birthday wishes to Gianluca. It's been a long and blessed year for us. We can see a much easier year ahead and one with great achievements.
One place I was excited to go was to my OB. I know what woman gets excited by this. Well, the appointment came at the perfect time being on Friday. She delivered Baby GL via emergency c-section and I remember her making it a point for me to see him before they took him into the NICU. We didn't know the outcome back then. Now, a year later she got to meet the big boy. It was exciting for her to meet the miracle she delivered.
Saturday, for Baby GL's birthday, I got him a couple baby balloons. Perfectly sized for him. No cake for him but I did put a little happy birthday decor on his bottle. He got a couple toys for his birthday, one being a piano, that would normally go on the side of his crib. However, Baby GL prefers it on the floor, under hid feet so he can bang on it and push the keys with his feet. I also got him a toy to stick on his new high chair that took me weeks to research and finally buy to have it on backorder. Oh well. He won't know the difference if it came now or later. Who knows if he'll even like being in a high chair.
Aside from his birthday we've been working on getting him through a cold and cough. The schmutzy nose is pretty much cleared up but we're still battling the cough. We've turned back to nebulizer to give him the Albuterol treatments. It's a little more effective over the inhaler. We wait until he's asleep so that he won't fight it. The inhaler has become a battle to give him now. He turned 1 and now he's got an attitude. He's always called the shots from day one so I guess it's not any different than normal.
This week we have a visit from the nurse to deliver Baby GL's final Synergist shot. It's a sign we're getting out of flu season and spring is coming. We have another appointment this week, but I honestly am not sure which department we're going to. It's in my calendar so I know I need to go.
Other things coming up will be his CT scan on his lungs. He'll need sedation for that which is never something I like thinking about. He'll also be having an echo on his heart next week. Once again we'll have to have sedation for that. At least both tests are brief.
Thank you to everyone who have offered your birthday wishes to Gianluca. It's been a long and blessed year for us. We can see a much easier year ahead and one with great achievements.
Wednesday, March 2, 2011
Only a few more days
Last when we left off Baby GL was making huge progress. I believe we are still in that momentum, however we saw our new physical therapist last Tuesday. The visit went well, she did an overall evaluation on his skills and play habits. Different pieces charted him around 5-6 months, others in the 2-3 month range. After the original evaluation the PT puts him in an overall range of a 2-3 month. She told us we may need to take our therapy to their other office, which would mean a longer commute each week for therapy. We are waiting for the verdict of where they want to take his therapy. We may get OT and Speech from the same clinic which would be good. We are currently enrolled in Waukesha county Birth to 3, but I think therapy from an outsourced clinic would be more aggressive and better for Baby GL's needs. It's a little difficult to take, hearing that your son, nearly 1 yr, has the "intelligence" of a 2-3 month old. When I see him and play with him he seems so much older.
So after our visit with PT we had our Birth to 3 Speech therapist come out Wednesday. She didn't do too much, it was more an overall look into where the therapy should go. However, this Speech therapist may visit once more but then she's off for 6 weeks so we won't see her. Outsourcing is sounding like the only option to use to get therapy going. We just have to wait for approval from the insurance company on what he is eligible for. So we wait, his fate in there hands.
So after our visit with PT we had our Birth to 3 Speech therapist come out Wednesday. She didn't do too much, it was more an overall look into where the therapy should go. However, this Speech therapist may visit once more but then she's off for 6 weeks so we won't see her. Outsourcing is sounding like the only option to use to get therapy going. We just have to wait for approval from the insurance company on what he is eligible for. So we wait, his fate in there hands.
This week we visited the cardiologist. He hasn't seen one since he was in the NICU and she really didn't do much. We did get his weight, 13lbs 1oz and the nurse measured 24.5 inches for height. I'm not sure what to think about it since last clinic visit he was 22.75 inches. I guess just like scales the tape measure have different scales of measurement.
So the one thing we did get from the cardiology visit was that we will be going forward with an echo to see the hole in his heart which will tell us if he is still in need of the oxygen. The oxygen helps the blood pressure, so if there's nothing new to see in the echo we can finally be released from the oxygen leash. At another visit we'll have a CT scan done. We're unable to have them done together because of the type of sedation they use and the places where the tests take place. The echo is in the cardiology clinic and the CT is down in Radiology.
Doctors and therapy visits aside we are so excited to celebrate Baby GL's first birthday this Saturday. Since the whole family is traveling it will just be the 3 of us. It's been a great year. We've had our challenges, but the end result is a beautiful, cuddly little boy.
Doctors and therapy visits aside we are so excited to celebrate Baby GL's first birthday this Saturday. Since the whole family is traveling it will just be the 3 of us. It's been a great year. We've had our challenges, but the end result is a beautiful, cuddly little boy.
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