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.
Wednesday, August 31, 2011
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.
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