My updates have been very few lately which makes me a bad blogger. It's an interesting transition from when I was emotionally required to update daily because there was so much information to remember. That was the original idea behind documenting my son's progress. I wanted to remember. There were so many milestones and precious moments that get pushed aside by the more emotional memories. Lately the memory of my son's 8th day of life has been lingering in my mind.
The first days in the NICU the doctors say the first 7 days are the the most critical. I'm not sure I agree with that. The first 7 days were like walking on a frozen lake on a warm day. You weren't sure if it was safe but you took the risk anyway. Maybe while you walked on the ice it made you nervous but it still supported you until you made it to solid ground. Maybe it's a silly metaphor but the anxiety you feel in your body is very similar, or so it was for me. Gianluca did as most children do in their first 7 days. It was the 8th day that will remain in my mind for many years to come.
At 21 months of age, corrected he would be almost 18 months, he amazes us. I think that's why that horrible day stays as a reminder for me to not take any moment with my son for granted. It's been very difficult the last few months while I've been working full time. I never had the desire to be a working mom. Unfortunately, the economy calls me to work. At least we are blessed with my family and opposite work schedules that Gianluca can stay at home safely during the flu season to receive his home therapy.
The last month has be an incredible journey of walking for Gianluca. I've missed a lot of those first steps. It's when I get home that my husband stops me and sets Gianluca on his feet and shows me what he's done that day. Emotions of sadness and excitement swell inside me at those moments. The wonderful feeling is that since I'm not home as much, Gianluca seems to prefer being with me when I'm home.
Gianluca knows when the front door opens. Even if we're quiet he can hear the squeak of the hinge and he pauses to try to focus on who is walking through the door. When he sees it's me he smiles ear to ear and wiggles his way over either crawling or now walking. Once he reaches me he pulls at my pants to have me lift him up. Interestingly enough, I don't get a welcome home kiss, I get the excited smack on the face. Oh well, I take what I can get. He then carries on about his day with cute baby murmuring. It's just amazing. What would have come of our family if we would have made the other decision on that 8th day to not continue to save him? We would have missed out on the last 20 months of pure joy. It will be an ongoing process to release the guilt I still feel from even considering the thought of "pulling the plug". I can't imagine how parents, who have endured the loss of a child, begin the healing process.
On a happier note, Gianluca is walking now. We had some rough night with a new molar that popped up this month but the walking has made up for the sleepless nights. He thinks its a game to walk across the room. From the couch to the toy box to the ottoman back to the toy box, it goes on and on. The laughter just fills us full every time he does it. Now he'll work on getting up from the floor to walking. Right now he can only find his balance starting out from a standing position maybe from the support of the furniture or from us holding his hand. First comes the stumbling walk next the running down the hall. Can't wait!
Monday, December 5, 2011
Thursday, November 17, 2011
Tiny Feet Giant Smiles: World Prematurity Day
Tiny Feet Giant Smiles: World Prematurity Day: World Prematurity Day Honor the million babies worldwide who died this year because they were born too soon, and the 12 million more...
Wednesday, November 16, 2011
World Prematurity Day
World Prematurity Day
Honor the million babies worldwide who died this year because they were born too soon, and the 12 million more who struggle to survive. November 17 is World Prematurity Day and when we focus everyone’s attention on the serious problem of premature birth.
“Like” World Prematurity Day on Facebook. Read stories from around the world and share your own. Help spread the word by updating your Facebook status with a message on premature birth. Together we can raise awareness of this serious problem and help more babies start healthy lives.
“Like” World Prematurity Day on Facebook. Read stories from around the world and share your own. Help spread the word by updating your Facebook status with a message on premature birth. Together we can raise awareness of this serious problem and help more babies start healthy lives.
Saturday, November 5, 2011
Walking
Just as he begins to fall, it's a classic "uh oh" face.
What's better than Daddy? My cell phone.
Sliding fun
How quickly he learned to crawl up the slide and slide sown all on his own. We only just put this up today.
Friday, October 21, 2011
First Steps
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.
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.
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.
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