Our life is on the move. Since our eye assessment I've been assertive in searching for a new eye doctor for Baby GL. I feel that I have left some of the issues on the back burner while other things have been made to be more important. I trusted that the doctors were giving me all the information that I needed. Come to find out that there were complete strangers that new my son's eye diagnosis before I even did. That's from an appointment we had in the early spring. Not acceptable. We need doctors that will take the time to talk to us and not just be a 2 dimensional person on paper. I'm extremely disappointed in how that system is working, and that's at Children's Hospital. Well, I just hope the new doctor will give us a plan. I believe that eye sight is just as important as weight gain and feeding issues. By the way, latest weight is 16lbs 1oz. We haven't done a height in a while so I'll have to do that for next post.
Speaking of feeding issues, we still continue to struggle with Baby GL's appetite. He immediately swings his head to the side and pierces his lips closed when he sees food. Once we get the first bite in he seems to get the idea, but he definitely has no interested in it. A bottle isn't as bad. He'll snack on his bottle all day. Especially in the evening and before bedtime. I have a feeling that Baby GL will have some issues with food when he's older just with he way we have to force it in him. His G-tube will probably be with him for a while. Along with that will be his O2 at night and we are being pressured about his medication. One in particular, the Viagra. We stopped the dosage due to him vomiting a lot and have slowly been introducing it again. We just stared giving the 3rd dose now after being pressured by the Pulmonary Hypertension team. I know they mean well, but they haven't a clue what it is to live with a vomiting issues. It's become so much part of our feeding ritual. We have the routine down on how to make the smallest mess. Not a habit I was dreaming about when I was thinking about being a parent.
On the flip side we have been enjoying the Autumn season. My sister and I took the kids for a quick trip to the pumpkin farm. My older nephew ran around like he just ate a pound of candy. At 2 he's not brave enough to go up onto the play set and down the slide alone. He really didn't care about the pumpkins. Baby GL wasn't too thrilled, either. I think he was more upset that I woke him from a nap to go. I'll post some picks with the pumpkins. You'll see how little interest he has in being there. The newest member, my baby nephew, his joy came from crying. This kid has a set of lungs on him. I really feel quite blessed that my son has more of a horse cry. I will take that any day over the piercing screams. My brother-in-law even agreed with that.
Babcia, Baby GL and I just went to the apple orchard for picking. I always look forward to that. He went with us last year but he was too small to do anything but be in his stroller. This time around he was not happy sticking it out in the stroller. He actually sat on the grass while we buried ourselves in the apple trees. He was having fun playing with the stroller straps and I gave him an apple to "chew" on. He has 4 teeth now so he gets those teeth marks in the apple, then he throws it. He's got the best throw I've ever seen from a baby. With these outdoor adventures comes dressing for the weather. We are back to the hat battle. How do you get these kids to keep their hats on? I think we'll be trying hat and hood so it's harder to pull off. I've bought more leg warmers, too. I LOVE baby leg warmers. Besides being cute they are so helpful as an extra layer on the legs. And if he gets to warm leg warmers, so do I. Gotta love the fashion come backs.
So, now we get to the biggest news. Baby GL took his first steps yesterday. It's bitter sweet because I wasn't there to see the first steps. My husband made sure it was the first thing I saw when I got home form work, though. It's only a few steps then a tumble, but it's such great progress. Baby GL is on the move now. He is not afraid to crawl anywhere, pull up on anything, and walk across anything that will hold him. One of my latest Craigslist finds is a kids trampoline. It's great for toddlers. Baby GL is a little small for it but he doesn't let that get in his way. I like to think the trampoline is what got him to take those first steps. He will freely crawl over to it, limb on to it, which is great because it's easily set higher than his waist. Once he's up he goes to the handle and walks his way up to standing to jump. The handle is taller than he his, but still within reaching distance. It's so cute to watch him jump. He gets the biggest smile on his face. For that face I will turn my whole living room into a playroom.
Since I've been writing this I've been asking my son's name just for personal reasons, but I feel so proud that I want to share him with the world. We battle with a name at the beginning but my heart was warmed when we named him Gianluca Valentin. He is our strong and rave little man that is proving to the world that the doctors can be wrong. He survived and is growing to be a perfect, playful little boy.
Friday, October 21, 2011
Wednesday, October 5, 2011
Eye assessment
Today, Baby GL is officially 19 months old. It' funny to count the months as they go by. I'm trying to remember what has happened over the last month and it's hard to remember. We've been adjusting to a new schedule with me working full-time again. I get the evenings while my husband takes the mornings. It's actually been nice getting my husband to try to adjust to Baby GL's needs. He has to be the one to make sure he gets his meals and naps and even therapy. It can really get complicated. I have to say he's doing a pretty good job. He's even made it to the doctor's appointments.
We are still battling the "failure to thrive" issue. We've found that instead of driving ourselves crazy trying to stuff Baby Gl, we're really following his lead. We've always done that, but know we're following a little more strict diet. I've made attempts to make baby food and it's been pretty successful. By successful, I mean, he eats it. He's still particular on texture, but I think he's warming up to trying different things. Our consistencies have been fatty yogurt and giving him as much formula as he'll drink. The formula we're on is very high calorie so if he's drinking well through the day then we should get some great weight on him. The last weight taken was already a couple weeks back but he did finally break 16lbs. He was maybe 16.4lbs. We have a couple appointments next week so we'll get an updated weight and I'm hoping for a height, too.
The few things that are memorable for me this month actually include Baby GL having a cold. He had the nastiest part of his cold during a weekend, which was good because he was miserable. I was worried that with his congestion he would have breathing issues. His breathing issues included lots of crying. He would fuss every couple hours so I decided just to have him come sleep in our bed until my husband came home from work. He still woke up early the next day. We were good for nearly a week when we had another episode of late night crying. It turned into a slumber party in mommy and daddy's bed. He wasn't settling down by himself so I brought him in bed. It's funny how sleeping with a baby is like sleeping with a dog. First, he crawls to the top of the bed. Not happy up there he maneuver's his way towards the bottom of the bed. Flip flop, he finally finds a spot to lay, while mommy and daddy hang on tight the edge of the bed. Double feature the following night.
So today we finally had our vision assessment that has been rescheduled twice. It was really informative. We had someone from Wisconsin Center for the Blind come out and actually assess how Baby GL sees. We know he can see, but it was hard to know what he sees. His official sight diagnosis from his eye doctor is near sighted in one eye and far sighted in the other. He still has issues with nystagmus, which means his eyes dont' settle, they have a slight giggle when he's looking around. This is well known in preemies that had ROP. One thing that was brought to light today was how he focuses. I never to notice to Baby GL turning his head slightly to the left when he was looking at something. In order to focus he needs to find that nul point. It's a point where he is able to find focus between both eyes. I've noticed the tilt in his head before but I never realized that it was Baby GL compensating for his vision. We got some great tips on how to stimulate him. We were even educated on what type of sunglasses to get him. It was one assessment that was actually very educational for us.
Baby GL is continuing to grow at an amazing pace. Soon I will be writing about how he's walking. Right now I'm just enjoying our small accomplishments. I'm not in a hurry to have him walking. He does get up to his walker now and cruises across the room with ease so I think walking is just around the corner. I think it's important for us to live for the moment. Even the sleepless night are memorable for me so Id hate to forget them.
We are still battling the "failure to thrive" issue. We've found that instead of driving ourselves crazy trying to stuff Baby Gl, we're really following his lead. We've always done that, but know we're following a little more strict diet. I've made attempts to make baby food and it's been pretty successful. By successful, I mean, he eats it. He's still particular on texture, but I think he's warming up to trying different things. Our consistencies have been fatty yogurt and giving him as much formula as he'll drink. The formula we're on is very high calorie so if he's drinking well through the day then we should get some great weight on him. The last weight taken was already a couple weeks back but he did finally break 16lbs. He was maybe 16.4lbs. We have a couple appointments next week so we'll get an updated weight and I'm hoping for a height, too.
The few things that are memorable for me this month actually include Baby GL having a cold. He had the nastiest part of his cold during a weekend, which was good because he was miserable. I was worried that with his congestion he would have breathing issues. His breathing issues included lots of crying. He would fuss every couple hours so I decided just to have him come sleep in our bed until my husband came home from work. He still woke up early the next day. We were good for nearly a week when we had another episode of late night crying. It turned into a slumber party in mommy and daddy's bed. He wasn't settling down by himself so I brought him in bed. It's funny how sleeping with a baby is like sleeping with a dog. First, he crawls to the top of the bed. Not happy up there he maneuver's his way towards the bottom of the bed. Flip flop, he finally finds a spot to lay, while mommy and daddy hang on tight the edge of the bed. Double feature the following night.
So today we finally had our vision assessment that has been rescheduled twice. It was really informative. We had someone from Wisconsin Center for the Blind come out and actually assess how Baby GL sees. We know he can see, but it was hard to know what he sees. His official sight diagnosis from his eye doctor is near sighted in one eye and far sighted in the other. He still has issues with nystagmus, which means his eyes dont' settle, they have a slight giggle when he's looking around. This is well known in preemies that had ROP. One thing that was brought to light today was how he focuses. I never to notice to Baby GL turning his head slightly to the left when he was looking at something. In order to focus he needs to find that nul point. It's a point where he is able to find focus between both eyes. I've noticed the tilt in his head before but I never realized that it was Baby GL compensating for his vision. We got some great tips on how to stimulate him. We were even educated on what type of sunglasses to get him. It was one assessment that was actually very educational for us.
Baby GL is continuing to grow at an amazing pace. Soon I will be writing about how he's walking. Right now I'm just enjoying our small accomplishments. I'm not in a hurry to have him walking. He does get up to his walker now and cruises across the room with ease so I think walking is just around the corner. I think it's important for us to live for the moment. Even the sleepless night are memorable for me so Id hate to forget them.
Wednesday, September 14, 2011
Failure to Thrive
I realize I left everyone hanging not updating since our hospital visit. Baby GL came home as expected on the Friday before Labor Day weekend. He gained some weight during his stay which seemed to satisfy the doctors. I still feel that the hospital stay was unnecessary. There were other ways to accomplish what they needed without sticking my son is a small hospital room with no where go to go. Had they thought it through and known about the MRSA situation I can only hope they wouldn't have done that to him. Now we have to go through another round of three negative results to not be put in isolation if every there is another hospital visit. We thought we had two negatives but then he ended up positive this last time around. Just the icing on the cake, I guess.
Once Baby GL was home he seemed to adjust back to his schedule. We are still experiencing daily vomiting fits. Something we are experimenting with is taking him off the viagra meds we started for his heart a few weeks back. I'm wondering if that adds some sensitivity to his stomach. Baby GL will vomit just seeing that spoon coming near him. I really don't think that's a natural reaction. The goal coming out of the hospital was to get Baby GL to eat 5 jars of food or yogurt with a teaspoon of oil added to each, 16 ounces of Compleat Pediatric, as well as 4 ounces of whole milk. So far we've only been successful with 3 jars of food or yogurt and maybe the full amount of liquids. He's just so small you hate to stuff him because it will just come right back up. It's a constant struggle.
On the contrary to Baby GL's weigh issues, his energy is as excitable as can be. He resists naps, he jumps and crawls around at any given moment and will not sit still at any point during the day. Even when he sleeps he manages to roll around do much he wraps the oxygen cord around him so many times it comes off the oxygen tank. I've woken up to the whooshing sound coming from the tank after he's pulled it off. Usually that would be a sign that it's time to come off the oxygen. The doctors don't seem to see it that way. They actually thought adding one more cord, a feeding pump, was a great decision. Sure, why not. Let's never get sleep because we'll be up all night unwrapping our son.
I still have a lot of hostility towards the doctors after this last hospital stay. The doctors diagnosed Baby Gl as "failure to thrive". I've heard other babies being diagnosed as such. However, when you hear that about your own child you start to question everything. Most of the time I just think about how that should really be called something else. If my son was "failing to thrive" why would he be crawling around, giggling, walking, rolling, talking, etc. That to me is the definition of thriving. He's alive, he's healthy and very happy. Yes, he's small. So let's plan the diet and stop defining it.
Aside from all the crazy stuff we've actually found a lot of great times this week. I took Baby GL's little baby pool out for him to play in. He loves to play in the bath now, splashing around, standing up against the edge of the tub then sitting, then up again. I figured the pool would be just as great. It was fun, but not the same effect. We've been trying to play more with Baby GL's cousins and to take him around other people. He's been experiencing a lot of separation anxiety. It's not good when he doesn't even recognize his own grandparents.
It's been another week of adjustments, to say the least. We've begun t realize that this is how our life will continue. I have no fears that Baby L won't catch up as he gets older. The comical thing is that my 2 month old nephew wears the same size clothing as Baby GL, who is now 18 months old. Well, so many parents wish their babies would stay babies longer. I guess we get to experience that in real life.
Once Baby GL was home he seemed to adjust back to his schedule. We are still experiencing daily vomiting fits. Something we are experimenting with is taking him off the viagra meds we started for his heart a few weeks back. I'm wondering if that adds some sensitivity to his stomach. Baby GL will vomit just seeing that spoon coming near him. I really don't think that's a natural reaction. The goal coming out of the hospital was to get Baby GL to eat 5 jars of food or yogurt with a teaspoon of oil added to each, 16 ounces of Compleat Pediatric, as well as 4 ounces of whole milk. So far we've only been successful with 3 jars of food or yogurt and maybe the full amount of liquids. He's just so small you hate to stuff him because it will just come right back up. It's a constant struggle.
On the contrary to Baby GL's weigh issues, his energy is as excitable as can be. He resists naps, he jumps and crawls around at any given moment and will not sit still at any point during the day. Even when he sleeps he manages to roll around do much he wraps the oxygen cord around him so many times it comes off the oxygen tank. I've woken up to the whooshing sound coming from the tank after he's pulled it off. Usually that would be a sign that it's time to come off the oxygen. The doctors don't seem to see it that way. They actually thought adding one more cord, a feeding pump, was a great decision. Sure, why not. Let's never get sleep because we'll be up all night unwrapping our son.
I still have a lot of hostility towards the doctors after this last hospital stay. The doctors diagnosed Baby Gl as "failure to thrive". I've heard other babies being diagnosed as such. However, when you hear that about your own child you start to question everything. Most of the time I just think about how that should really be called something else. If my son was "failing to thrive" why would he be crawling around, giggling, walking, rolling, talking, etc. That to me is the definition of thriving. He's alive, he's healthy and very happy. Yes, he's small. So let's plan the diet and stop defining it.
Aside from all the crazy stuff we've actually found a lot of great times this week. I took Baby GL's little baby pool out for him to play in. He loves to play in the bath now, splashing around, standing up against the edge of the tub then sitting, then up again. I figured the pool would be just as great. It was fun, but not the same effect. We've been trying to play more with Baby GL's cousins and to take him around other people. He's been experiencing a lot of separation anxiety. It's not good when he doesn't even recognize his own grandparents.
It's been another week of adjustments, to say the least. We've begun t realize that this is how our life will continue. I have no fears that Baby L won't catch up as he gets older. The comical thing is that my 2 month old nephew wears the same size clothing as Baby GL, who is now 18 months old. Well, so many parents wish their babies would stay babies longer. I guess we get to experience that in real life.
Thursday, September 1, 2011
One more day
We are expecting to stay one more night in the hospital. It's been a frustrating battle with the doctors and nutritionist. They want to give Baby GL an over abundance of extra calories to bump his growth. For a child as active as him, it does make sense. However, since we've been stuck in a small hospital room, Baby GL has had no interest to drink from a bottle. Really getting him to take anything has been terribly difficult because he just can't be the same active child when there's no room to play. The MRSA swab he had done ended up positive, which just means we have to start again to get the 3 negative swabs before he would be out of isolation in the even he would be hospitalized again. The good news is that they plan to let us come home tomorrow.
Baby GL's new diet will now consist of 5 solid baby food feedings with one tsp of oil added to the baby food to boost calories. We then will keep the 2 cans of Compleat Nutrition and 4 ounces of whole milk. It's a challenge to be on this diet in the hospital. It's just unrealistic in this setting. I think that if they really wanted an accurate judgement of how he uses his calories and how much he can tolerate they should've had a nurse come to our home for observation. We had a home nurse when Baby GL first came home. I'm sure it was possible to do. The only thing was that they wanted lab work done to see the function of the kidneys, liver, etc. to make sure the diet wasn't harming his body. It really is a high calorie count for the average child.
I could be one of those very optimistic parents and say how wonderful it has been learning about my son's body and feeding habits. however, it's difficult to be optimistic when you have to take your son out of his home, away from what he's used to, and start poking at him every couple hours. Since Baby GL was born I have learned a tremendous amount about how to give him the best care and how to read his signs. I consider myself the expert being his mother. I just don't understand why doctors can't trust us moms when we tell them something will not work for our children. I'm lucky we got the diet we did. The nurse was suggesting we tube feed while he sits in a high chair. Is there a 17 month old child out there that sits still in his high chair? Not my son. She also suggested having Baby GL wear a backpack with a pump to pump formula in through his tube. The same pump we used when he was much younger. The pump backpack is half his size. There is no possible was he would continue a normal life with that. I really don't know how these people can make recommendations until they actually experience the care needed 24 hours a day. Taking care and following the directions given from the doctor on patients for maybe an 8 hour shift is completely different from the care you give your own child. It's just a frustrating scenario.
Once again, the good news is that tomorrow our lives will go back to normal and we can get out baby home. That is really where he needs to be.
Baby GL's new diet will now consist of 5 solid baby food feedings with one tsp of oil added to the baby food to boost calories. We then will keep the 2 cans of Compleat Nutrition and 4 ounces of whole milk. It's a challenge to be on this diet in the hospital. It's just unrealistic in this setting. I think that if they really wanted an accurate judgement of how he uses his calories and how much he can tolerate they should've had a nurse come to our home for observation. We had a home nurse when Baby GL first came home. I'm sure it was possible to do. The only thing was that they wanted lab work done to see the function of the kidneys, liver, etc. to make sure the diet wasn't harming his body. It really is a high calorie count for the average child.
I could be one of those very optimistic parents and say how wonderful it has been learning about my son's body and feeding habits. however, it's difficult to be optimistic when you have to take your son out of his home, away from what he's used to, and start poking at him every couple hours. Since Baby GL was born I have learned a tremendous amount about how to give him the best care and how to read his signs. I consider myself the expert being his mother. I just don't understand why doctors can't trust us moms when we tell them something will not work for our children. I'm lucky we got the diet we did. The nurse was suggesting we tube feed while he sits in a high chair. Is there a 17 month old child out there that sits still in his high chair? Not my son. She also suggested having Baby GL wear a backpack with a pump to pump formula in through his tube. The same pump we used when he was much younger. The pump backpack is half his size. There is no possible was he would continue a normal life with that. I really don't know how these people can make recommendations until they actually experience the care needed 24 hours a day. Taking care and following the directions given from the doctor on patients for maybe an 8 hour shift is completely different from the care you give your own child. It's just a frustrating scenario.
Once again, the good news is that tomorrow our lives will go back to normal and we can get out baby home. That is really where he needs to be.
Wednesday, August 31, 2011
Visit 3
One of the RNs at Waukesha NICU told me that on average these babies have 3 visits back to the hospital after going home. Well, let's hope this is visit number 3 and the last one. We had an appointment with Cardiology on Monday just to check in, get Baby Gl's weight and see how he was doing with his new feeding schedule. Unfortunately, his weight was down so now they want to intervene. The requested to admit Baby Gl into the hospital for a few days for observation to see if we could resolve his weight issues. It was very emotion for my husband to think about our son going back into the hospital. I think I handled it better because I knew it wasn't a trip starting with a call to 911. The goal is just to observe and be able to bring him home before the weekend.
Yesterday, by about noon, we admitted Baby Gl in to Children's Hospital. I think we've been spoiled in the past getting put into the new wing of the hospital so now that we have a room in the old wing we're a little disappointed. I shouldn't complain. It will just mean we want to come home that much sooner.
Baby Gl is completely aware of his surroundings. He knows he not at home and he knows these are not Mom and Dad coming in to check on him. We've had to stay close by because he will just cry when we're not around. His first day settling in was hard for him. We went for dinner during his nap and of course didn't make it back before he woke up. We found him in the arms of a care volunteer just crying away, which is usually what happens when we're not around. It's heartbreaking, but it's difficult to be there ever second. To put him down for a nap we have to hide behind the separation curtain and just wait. He wines and wiggles around for quite awhile before he eventually settles in.
Neither of us spent the night in the hospital. We got Baby Gl to sleep and went home to sleep. I made it back to the hospital before he work up, however, he had been awakens a few times earlier from labs coming through and the nurses fussing. He even vomited during the night right at the last bit of his tube feeding with the nurse. That wasn't anything new for us. We had found that tube feeding has to be minimal or he won't tolerate any longer. It's a battle because he needs to eat but when he doesn't take enough by bottle we have to get it in somewhere.
So today the regime is to get 24 ounces of this Compleat Pediatric rather than the 16 we've been aiming for. I don't know that we'll do it by mouth, but we'll hope. Everything else will remain the same. The nurses and nutrition are following closely. His weight as of Monday was 6.76 kilos, 14.87lbs. Today the nurse weighed him and he was up at 6.93 kilos, 15.25lbs. We know he can gain weight it's just keeping the weight on and figuring what diet works well for him. The doctor came through with a theory that maybe he's constipated which would cause him not to eat. Well, I can say I agree since I changed 3 dirty diapers in 2 hours already today. I guess we'll just humor him and let him rule constipation out on his own.
The one thing making us feel very trapped here is that Baby Gl needs to be under isolation. Back in January, when he was hospitalized, he tested positive for MRSA. I guess it's highly contagious and he needs 3 negative test results before they will let him out of isolation when he's hospitalized. He had 1 negative result back during his surgery in June and now they are doing a 2nd test. With him in isolation we have to stay in the room. We've had to bring toys in and let him explore the hospital room only. He's surprisingly fine with it. We were given a bouncer today for him to play in. He doesn't play with one at him now but he likes to play and walk around the outside of them so I think it will entertain him. It's only a few days. We can tolerate a few days. Hopefully by the time they release him they will have the answers we all need to get Baby Gl growing.
Yesterday, by about noon, we admitted Baby Gl in to Children's Hospital. I think we've been spoiled in the past getting put into the new wing of the hospital so now that we have a room in the old wing we're a little disappointed. I shouldn't complain. It will just mean we want to come home that much sooner.
Baby Gl is completely aware of his surroundings. He knows he not at home and he knows these are not Mom and Dad coming in to check on him. We've had to stay close by because he will just cry when we're not around. His first day settling in was hard for him. We went for dinner during his nap and of course didn't make it back before he woke up. We found him in the arms of a care volunteer just crying away, which is usually what happens when we're not around. It's heartbreaking, but it's difficult to be there ever second. To put him down for a nap we have to hide behind the separation curtain and just wait. He wines and wiggles around for quite awhile before he eventually settles in.
Neither of us spent the night in the hospital. We got Baby Gl to sleep and went home to sleep. I made it back to the hospital before he work up, however, he had been awakens a few times earlier from labs coming through and the nurses fussing. He even vomited during the night right at the last bit of his tube feeding with the nurse. That wasn't anything new for us. We had found that tube feeding has to be minimal or he won't tolerate any longer. It's a battle because he needs to eat but when he doesn't take enough by bottle we have to get it in somewhere.
So today the regime is to get 24 ounces of this Compleat Pediatric rather than the 16 we've been aiming for. I don't know that we'll do it by mouth, but we'll hope. Everything else will remain the same. The nurses and nutrition are following closely. His weight as of Monday was 6.76 kilos, 14.87lbs. Today the nurse weighed him and he was up at 6.93 kilos, 15.25lbs. We know he can gain weight it's just keeping the weight on and figuring what diet works well for him. The doctor came through with a theory that maybe he's constipated which would cause him not to eat. Well, I can say I agree since I changed 3 dirty diapers in 2 hours already today. I guess we'll just humor him and let him rule constipation out on his own.
The one thing making us feel very trapped here is that Baby Gl needs to be under isolation. Back in January, when he was hospitalized, he tested positive for MRSA. I guess it's highly contagious and he needs 3 negative test results before they will let him out of isolation when he's hospitalized. He had 1 negative result back during his surgery in June and now they are doing a 2nd test. With him in isolation we have to stay in the room. We've had to bring toys in and let him explore the hospital room only. He's surprisingly fine with it. We were given a bouncer today for him to play in. He doesn't play with one at him now but he likes to play and walk around the outside of them so I think it will entertain him. It's only a few days. We can tolerate a few days. Hopefully by the time they release him they will have the answers we all need to get Baby Gl growing.
Monday, August 29, 2011
Hoping for Growth
It has been so long since I last updated. Our month has been terribly busy. Baby Gl continues to keep us on our toes. He made it through hi sear infection and things have gone pretty much back to normal. We've been jumping around over this issue on his growth. It's an interesting topic. When you see Baby GL he looks like a very health little boy. Very active crawling around, walking along furniture, puling himself up on anything he can and even crawling up stairs now. You would think nothing was wrong. Well, the clinic appointments just don't get better.
A couple weeks ago Baby Gl had an echo performed to look at his ASD, hole in his heart. They were trying to measure a general amount of how much pressure is being put on his heart. The Pulmonary Hypertension specialist believes there's enough to medicate and to keep the O2. The O2 only needs to be on at night, really for the reason than unless Baby Gl wears his own O2 backpack there's no way to keep it on. Another change was to add another medication which is basically Viagra. That took some convincing from the doctor with the insurance company to approve that medicine. To my understanding Viagra helps to lower blood pressure and do other therapy for the heart. However, the side effects are still as we all know Viagra to be. He hasn't seemed to change his mood on the new med. I have noticed him kissing a lot more, usually girls.
So with that same appointment we were advised to speak with the nutritionist that works with the cardiology department. We know that the Pediasure was never something we were successful with. The nutritionist actually put together a whole new diet based on how we were already feeding Baby GL. In place of 24 ounces of Pediasure we are now trying Compleat Pediatric. It is made of real meat and vegetables dehydrated and processed in a liquid form. At first I wasn't thrilled because the ingredients still contain corn and soy. At this point those are two ingredients I'd like to keep my son off of until later in life. Since we have no other choice we have given it a try and the side effects are much better compared to Pediasure. His diet now consists of 16 ounces of this new formula, 4 ounces of Organic whole milk, 3 full meals of baby food with the addition of 1tsp of olive oil to eat meal for extra calories, as well as any other fluids like juice or water he he's needing it. We've done well, except he will get full every once in a while, which he shows up with vomiting his whole meal. We just can't win. It's a process.
It's been a very long time, but we had a whole family outing this weekend. On Sunday the three of us, my sister's whole family, and my parents all went to the zoo. It was KidsReach Foundation Day so the ticket sales went for a good cause. It was a perfect day for the zoo. I don't think Baby Gl really knew where we were, but we'll have pictures to show him when he's older. It was just so wonderful to have a good day as a family. We couldn't escape the daily challenges of feeding Baby Gl, but for the most of the day he was thrilled to be with out.
It's amazing to see how much Baby Gl has progressed even over these last few weeks. He moves, without hesitation, all over our home. Now he's crawling up stairs, in and out of rooms, and climbing up whatever he can find. His verbalizations have gotten so much better an clearer. He's testing new sounds and getting louder. He knows his name and whole Mom and Dad are and even know what a ball is and where it is in the room. He's even begun to get incredible needy. When I or my husband leave him, or just leave a room sometimes he begins to cry. I'm not sure if it's because I've taken on more work. Even if he goes with my mother he cries. I'm hoping it's a stage. It could just be his new tooth he has popping out on top that's causing him grief. Either way, it's nice to feel so loved and needed. It just breaks my heart to hear him cry.
A couple weeks ago Baby Gl had an echo performed to look at his ASD, hole in his heart. They were trying to measure a general amount of how much pressure is being put on his heart. The Pulmonary Hypertension specialist believes there's enough to medicate and to keep the O2. The O2 only needs to be on at night, really for the reason than unless Baby Gl wears his own O2 backpack there's no way to keep it on. Another change was to add another medication which is basically Viagra. That took some convincing from the doctor with the insurance company to approve that medicine. To my understanding Viagra helps to lower blood pressure and do other therapy for the heart. However, the side effects are still as we all know Viagra to be. He hasn't seemed to change his mood on the new med. I have noticed him kissing a lot more, usually girls.
So with that same appointment we were advised to speak with the nutritionist that works with the cardiology department. We know that the Pediasure was never something we were successful with. The nutritionist actually put together a whole new diet based on how we were already feeding Baby GL. In place of 24 ounces of Pediasure we are now trying Compleat Pediatric. It is made of real meat and vegetables dehydrated and processed in a liquid form. At first I wasn't thrilled because the ingredients still contain corn and soy. At this point those are two ingredients I'd like to keep my son off of until later in life. Since we have no other choice we have given it a try and the side effects are much better compared to Pediasure. His diet now consists of 16 ounces of this new formula, 4 ounces of Organic whole milk, 3 full meals of baby food with the addition of 1tsp of olive oil to eat meal for extra calories, as well as any other fluids like juice or water he he's needing it. We've done well, except he will get full every once in a while, which he shows up with vomiting his whole meal. We just can't win. It's a process.
It's been a very long time, but we had a whole family outing this weekend. On Sunday the three of us, my sister's whole family, and my parents all went to the zoo. It was KidsReach Foundation Day so the ticket sales went for a good cause. It was a perfect day for the zoo. I don't think Baby Gl really knew where we were, but we'll have pictures to show him when he's older. It was just so wonderful to have a good day as a family. We couldn't escape the daily challenges of feeding Baby Gl, but for the most of the day he was thrilled to be with out.
It's amazing to see how much Baby Gl has progressed even over these last few weeks. He moves, without hesitation, all over our home. Now he's crawling up stairs, in and out of rooms, and climbing up whatever he can find. His verbalizations have gotten so much better an clearer. He's testing new sounds and getting louder. He knows his name and whole Mom and Dad are and even know what a ball is and where it is in the room. He's even begun to get incredible needy. When I or my husband leave him, or just leave a room sometimes he begins to cry. I'm not sure if it's because I've taken on more work. Even if he goes with my mother he cries. I'm hoping it's a stage. It could just be his new tooth he has popping out on top that's causing him grief. Either way, it's nice to feel so loved and needed. It just breaks my heart to hear him cry.
Tuesday, August 2, 2011
First Ear Infection
July brought more work for me and my husband. I took some extra work, temporarily, that has made us adjust to a new schedule. It's really taken more work for my husband because he someone who normally sleeps late and leave much of our son's care to me. It was quite eye opening and has been a great experience for him to experience what I do on a daily basis. He needed to be awake with Baby GL early, sometimes 5:30am. He was in charge of making sure Baby GL was fed, bathed, clothed and ready for therapy. Therapy happens 4 times a week so that was a new schedule to try to remember. He never knew if someone would be knocking on our door. It was entertaining to watch, and I hoped he gained a better respect for me.
There were two appointments at Children's Hospital clinic that he was responsible for getting him to. That was an interesting outcome. The first one was with the Neonatal Development Clinic. We had an evaluation done back in January where they bring in PT, OT, and speech and do an overall evaluation of his development milestones. Back in July he was put in the range of a 5 month old baby, speech more n the 2-3 month old. His size still remains in the less than 3%.
So this time around, my husband got to be the one to watch them "evaluate". He took their comments very personally. When you put a child in an unknown room with new toys and new people he's not going to "perform" the way he does in the comforts of home. My husband found himself trying to convince the team of Baby Gl's skills. When ever he wouldn't respond to something they tried to get him to do, my husband would jump in and get him to do it. Then there was shock as if it was so surprising that he wouldn't want to play with strangers. One thing that really frustrated my husband was when they tried to get him to color. I don't know many 1 year old than can color so we found that to be a little strange. I've never even thought of giving Baby GL a crayon. I know where it would go, in his mouth, then lost forever somewhere in the toy box.
His overall progress puts him in the 10-11 months old range, which is great since his corrected age was 13 months during the visit. Within the 6 months since the last eval he's made tremendous progress. Who could be disappointed in that. There was still a concern about his weight. At the visit he wighed 14lbs 11 oz which is down from his prior weights. In my last entry I wrote about Baby GL being put on Pediasure. Well, after 2 weeks I began to notice side affects, the one that stood out the most was his terrible breath. The smell continued in his diaper. The worst smell. After doing a little research I read other mothers whose children developed thrush on Pediasure due to the sugar content. That explains the bad breath immediately. At that point began cutting the Pediasure with whole milk, about half and half. The bad breath went away immediately. However, the developmental team thought I was being a bad mother, maybe not, but the whole milk mixture doesn't have enough calories and they actually recommended going beyond the 24oz of Pediasure we were already giving. My husband, being a husband, never included the detail about the thrush in the explanation of why we changed his diet. No problem. I'm great at ignoring people's bad advice.
So now Baby GL's diet includes his mixed milk cocktail and he still continues to get 3 meals spoon fed, fruit and veg. That's when my husband remembers that the baby needs to eat. I continued to do more research on weight gain for babies and found a mother that was introduced to Brown Rice Protein. I found it at our local health food store and added it to my sons daily diet. I add it to his milk, which is nothing new to the rice cereal we typically add. I add it to his fruits and veg, as well as high fatty yogurt that he loves. The final addition to his diet was olive oil. I went back to added oil during his nightly tube feeding. It's pure fat which is what he needs to gain weight.
I think we are making progress. He had another clinic appointment last week in the Genetics clinic and he gain a few ounces. Not much, but it's slow progress. That was another appointment my husband had to get him to. It was an early one at 8:30am, which was difficult because he was then going into work for 12 hours. I had my mother meet him to take Baby GL so he could go to work. Once again, he needs to experience motherhood as we all live it.
Genetics was actually pleased with Baby GL. After a brief evaluation they found nothing that stands out as abnormal in him. The only thing was his fingernails. They kind of curl up at the end, which I think is due to the fact that he grabs and pinches everything he touches. I think he'll grow out of it. My husband and mother were very relieve to get news like that. The Genetics team would, eventually, like to get some x-rays to look at his bones, but they see no concern to do it now. That would be a lot of stress on him.
Overall, the month has brought nothing but great progress in Baby GL. He's growing and exploring so much everyday. He's really starting crawling all around. He follows us to the bathroom, kitchen and everywhere else. When my husband is grooming himself in the bathroom, Baby GL has to be there at the bathroom door watching. We now have to really watch where we step because we'll never known where he'll pop up. I can;t leave him out of my sight for any amount of time now. He's regressed to back scooting again. I think he can scoot super fast now on his back and thinks it's fun. Well, on his back he can fit under furniture, including the couch. I found him stuck between the wall and the couch one afternoon. I had to move the couch to get at him. He just entertains himself all day long. He's just thrilled to have places to crawl, toys to play with and a mirror to make out with. That's super cute! I keep a long mirror against the chair and he spends all day crawling up to it to give the baby a kiss. He LOVES babies. My sister just had a baby and he gives that little guy kiss after kiss. Even the babies on the diaper boxes. Every once in a while I'll get a kiss, but it's not a frequent.
Well, that pretty much bring us to today. I took him to the doctor concerned about a cold that he may have developed over the weekend. A cold is not something I'd normally be concerned about, except this one was causing him to vomit many times throughout the day. It's hard to gain weight when you can't keep anything down. Turns out, Baby GL has his first ear infection. It struck me as a surprise. There were no signs. The only other time he had ear issues was when he perforated an eardrum during his hospital stay at Christmas. That was caused by bronchiolitis he had. He really started to show how much his ear was bothering him after the appointment. He was very needy and whiny, which is not normal for him. I put him t bed early today, knowing he was getting the medicine for the infection. Hopefully in five days he'll be back to his happy self and keeping his food down. When he gets sick, it's funny how I do more laundry.
There were two appointments at Children's Hospital clinic that he was responsible for getting him to. That was an interesting outcome. The first one was with the Neonatal Development Clinic. We had an evaluation done back in January where they bring in PT, OT, and speech and do an overall evaluation of his development milestones. Back in July he was put in the range of a 5 month old baby, speech more n the 2-3 month old. His size still remains in the less than 3%.
So this time around, my husband got to be the one to watch them "evaluate". He took their comments very personally. When you put a child in an unknown room with new toys and new people he's not going to "perform" the way he does in the comforts of home. My husband found himself trying to convince the team of Baby Gl's skills. When ever he wouldn't respond to something they tried to get him to do, my husband would jump in and get him to do it. Then there was shock as if it was so surprising that he wouldn't want to play with strangers. One thing that really frustrated my husband was when they tried to get him to color. I don't know many 1 year old than can color so we found that to be a little strange. I've never even thought of giving Baby GL a crayon. I know where it would go, in his mouth, then lost forever somewhere in the toy box.
His overall progress puts him in the 10-11 months old range, which is great since his corrected age was 13 months during the visit. Within the 6 months since the last eval he's made tremendous progress. Who could be disappointed in that. There was still a concern about his weight. At the visit he wighed 14lbs 11 oz which is down from his prior weights. In my last entry I wrote about Baby GL being put on Pediasure. Well, after 2 weeks I began to notice side affects, the one that stood out the most was his terrible breath. The smell continued in his diaper. The worst smell. After doing a little research I read other mothers whose children developed thrush on Pediasure due to the sugar content. That explains the bad breath immediately. At that point began cutting the Pediasure with whole milk, about half and half. The bad breath went away immediately. However, the developmental team thought I was being a bad mother, maybe not, but the whole milk mixture doesn't have enough calories and they actually recommended going beyond the 24oz of Pediasure we were already giving. My husband, being a husband, never included the detail about the thrush in the explanation of why we changed his diet. No problem. I'm great at ignoring people's bad advice.
So now Baby GL's diet includes his mixed milk cocktail and he still continues to get 3 meals spoon fed, fruit and veg. That's when my husband remembers that the baby needs to eat. I continued to do more research on weight gain for babies and found a mother that was introduced to Brown Rice Protein. I found it at our local health food store and added it to my sons daily diet. I add it to his milk, which is nothing new to the rice cereal we typically add. I add it to his fruits and veg, as well as high fatty yogurt that he loves. The final addition to his diet was olive oil. I went back to added oil during his nightly tube feeding. It's pure fat which is what he needs to gain weight.
I think we are making progress. He had another clinic appointment last week in the Genetics clinic and he gain a few ounces. Not much, but it's slow progress. That was another appointment my husband had to get him to. It was an early one at 8:30am, which was difficult because he was then going into work for 12 hours. I had my mother meet him to take Baby GL so he could go to work. Once again, he needs to experience motherhood as we all live it.
Genetics was actually pleased with Baby GL. After a brief evaluation they found nothing that stands out as abnormal in him. The only thing was his fingernails. They kind of curl up at the end, which I think is due to the fact that he grabs and pinches everything he touches. I think he'll grow out of it. My husband and mother were very relieve to get news like that. The Genetics team would, eventually, like to get some x-rays to look at his bones, but they see no concern to do it now. That would be a lot of stress on him.
Overall, the month has brought nothing but great progress in Baby GL. He's growing and exploring so much everyday. He's really starting crawling all around. He follows us to the bathroom, kitchen and everywhere else. When my husband is grooming himself in the bathroom, Baby GL has to be there at the bathroom door watching. We now have to really watch where we step because we'll never known where he'll pop up. I can;t leave him out of my sight for any amount of time now. He's regressed to back scooting again. I think he can scoot super fast now on his back and thinks it's fun. Well, on his back he can fit under furniture, including the couch. I found him stuck between the wall and the couch one afternoon. I had to move the couch to get at him. He just entertains himself all day long. He's just thrilled to have places to crawl, toys to play with and a mirror to make out with. That's super cute! I keep a long mirror against the chair and he spends all day crawling up to it to give the baby a kiss. He LOVES babies. My sister just had a baby and he gives that little guy kiss after kiss. Even the babies on the diaper boxes. Every once in a while I'll get a kiss, but it's not a frequent.
Well, that pretty much bring us to today. I took him to the doctor concerned about a cold that he may have developed over the weekend. A cold is not something I'd normally be concerned about, except this one was causing him to vomit many times throughout the day. It's hard to gain weight when you can't keep anything down. Turns out, Baby GL has his first ear infection. It struck me as a surprise. There were no signs. The only other time he had ear issues was when he perforated an eardrum during his hospital stay at Christmas. That was caused by bronchiolitis he had. He really started to show how much his ear was bothering him after the appointment. He was very needy and whiny, which is not normal for him. I put him t bed early today, knowing he was getting the medicine for the infection. Hopefully in five days he'll be back to his happy self and keeping his food down. When he gets sick, it's funny how I do more laundry.
Monday, July 11, 2011
Gaining weight?
On Friday we had an appointment with Pulmonary. It's been a while since we've had a clinic visit so it felt strange going in to the hospital. I knew what we were going to hear. Last week we did his pulse-ox test overnight to measure his oxygen saturations. I noticed the numbers were low so I could only assume the answer was to keep him on the O2. Sure enough, it was. His saturations were actually within normal ranges for a normal child. However, a child with lung disease and pulmonary hypertension, the doctors want better saturations. So for now he will remain on the O2, at least until we get onto a medication for the pulmonary hypertension. We are going in within the next few weeks for another echo to get a general measurement of the pressure on his heart. Once they decide to medicate then we could probably move away from the O2.
Prior to any appointment we get Baby GL's weight and height. He absolutely hates it. He's such a big boy now that he sat on the big scale that everyone else stands on. Unfortunately, we found he has lost weight. At the time of his surgery back in June he was about 15 and 1/2 lbs. As of Friday he was only 15lbs 1 oz. His weight loss is not something the doctors want to see. His height wasn't accurate. The best they could get was 24.5 inches, which I know he's much taller but he screams and thrusts his body around that we can't get an accurate measurement. We've known for a while now that his weight has been a struggle. He's been getting the same formula, Neosure, for nearly a year. He began on breast milk, but it was fortified with the Neosure and since Christmas he's been strictly on 27 cal Neosure. He is eating fruits and vegetables pretty well 3 times a day. His activity level is so high that it's just not enough. A normal 1 year old would be getting off formula and moving to milk. Baby GL is not eating enough to move in that direction, though. So instead he's moved to Pediasure. I was a little leery of it because typically it's recommended for 24 months and older. It is more calories, 30 over the 27 we were giving him with the Neosure. We just have to see if it will be enough.
Baby GL has been on the Pediasure for the weekend now and he seems to like it. We don't have to thicken it with cereal, which is nice. It comes already premixed so there's no messy powder to deal with. I can't complain about that. The only thing I don't like is that Pediasure only comes flavored, which means extra sugar. We chose to stick to the vanilla for now. I don't think we'll ever try the chocolate or strawberry. I just can't help thinking it will be too much sugar in his system. Well, at least he's eating. If he grows faster he may move to more solid food, giving him the opportunity to get off so much of the Pediasure. A nice side affect of the Pediasure is that Baby GL smells like vanilla all the time. I'm going to assume it's from the random spills that land on his clothes, etc. It just makes me want to cuddle with him more.
Thursday, June 30, 2011
New Place
It has been such a long week. Baby GL left his first home and we moved into a new place. We consider it cleaner and more "social" with the distance to parks and places to walk. He took the move very well, but he definitely knew we were not in the same place. He was actually a little scared looking around and not recognizing where he was at. Lately, Baby GL has really noticed the different places we go. He will get very clingy when he not sure about a place. Clingy and then he'll try to climb up you which there's no higher point than having him wrap around my neck and shoulders. It just shows how much he's grown. He continues to show he has the curiosity and intelligence of a 15 month old, but the body of maybe an 8 month old.
Baby GL has been making great strides within the last week. He has started crawling. It's a little unstable, still, but he manages to get where he needs to go. H's even made it over to the bathroom knowing his daddy was in there. He doesn't let anything be an obstacle for him. It will take a little more time before he's really taking off crawling. Something else he's learned to do, which is a little dangerous for us now, is stand in his crib. I stood him up in his crib the other day just to see what he'd do and he was so excited. Well, no he's figured out how to get up there on his own. I found him there this morning. Now we have to lower to mattress. He's really been impressing us so much these last few weeks. He's just at that point where he's bursting out of his "baby" shell and moving into being a toddler.
I'm starting to think that writing about Baby GL's accomplishments may be boring for anyone but us. After everything we've seen and been through it's just been so exciting to witness everything he does. I think the moment he takes some bigger chance eating will be a huge milestone. He has 2 teeth on the bottom. It's hard to get in there to see if anymore are pooping out. He has the desire to eat, not just his fruit and veg. I was eating a muffin and he started to excessively swallow and grabbed my muffin out of my hand. The desire is there to eat more, but when we give him and of the dissolving rice baby snacks, he chokes when he gets a piece on is tongue. He will attack a MUM MUM like a champ but then he can't swallow anything that gets in his mouth. He just licks it and sucks on it until it falls apart into tiny mushy pieces. We'll have to keep waiting for him to get just a bit bigger, I think.
Baby GL has been making great strides within the last week. He has started crawling. It's a little unstable, still, but he manages to get where he needs to go. H's even made it over to the bathroom knowing his daddy was in there. He doesn't let anything be an obstacle for him. It will take a little more time before he's really taking off crawling. Something else he's learned to do, which is a little dangerous for us now, is stand in his crib. I stood him up in his crib the other day just to see what he'd do and he was so excited. Well, no he's figured out how to get up there on his own. I found him there this morning. Now we have to lower to mattress. He's really been impressing us so much these last few weeks. He's just at that point where he's bursting out of his "baby" shell and moving into being a toddler.
I'm starting to think that writing about Baby GL's accomplishments may be boring for anyone but us. After everything we've seen and been through it's just been so exciting to witness everything he does. I think the moment he takes some bigger chance eating will be a huge milestone. He has 2 teeth on the bottom. It's hard to get in there to see if anymore are pooping out. He has the desire to eat, not just his fruit and veg. I was eating a muffin and he started to excessively swallow and grabbed my muffin out of my hand. The desire is there to eat more, but when we give him and of the dissolving rice baby snacks, he chokes when he gets a piece on is tongue. He will attack a MUM MUM like a champ but then he can't swallow anything that gets in his mouth. He just licks it and sucks on it until it falls apart into tiny mushy pieces. We'll have to keep waiting for him to get just a bit bigger, I think.
Tuesday, June 21, 2011
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