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.
Friday, March 25, 2011
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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