So I find today much harder than I thought it would be. I thought I would just blow up my Facebook page with awareness facts, and I have instead found myself incredibly saddened for those who have lost a twin or both.
Today I have burst in to tears that sadly, there is a problem with the overall awareness of TTTS in the general public. No one knows about it. If you don't get a good doctor, he or she may not know about it, or not know ENOUGH about it. I keep reading posts on TTTS Facebook boards of people's obstetricians being complete idiots and either thinking they can handle it, and being too ignorant to refer the patient out to a specialist. Others taking the "wait and see approach." Really??? What if you had cancer and your doctor didn't refer you out to a specialist, or told you to wait and see if it gets worse before taking the next step. Would you listen? Hell no! Because we all know that cancer is deadly. So imagine this: You are pregnant with identical twins. You have a friend who just had fraternal twins. Your OB notes that the twins are different in size at a routine ultrasound. You call up your twin mommy friend. She tells you that hers were also different in size, so don't worry about it. This is a hypothetical situation I just made up, but I can bet this has happened before. What people don't know is that in identical twins, they SHARE a placenta. That is the only reason the obstetrician can tell you for certain when you are pregnant that your twins are indeed identical. Fraternal twins have their own placenta. TTTS occurs in 15-20% of identical twin pregnancies. Surprising, how can you expect that the placenta would most of the time naturally know to share evenly between the two babies? If you know someone who is pregnant with twins, identical or fraternal, please take the time to ask them if they know what TTTS is. You can tell them that one of your friends had twins who had TTTS and you just thought you would mention it, and encourage them to Google it. Regardless of if the twins are identical or fraternal, they NEED to be aware of it. Here's why: 1) .5% of all TTTS cases happen in fraternal twins. There is hardly any information on this anywhere on the internet, and most of the "criteria" for a TTTS diagnosis the main point is that the twins must be monochorionic (identical). I'm not 100% sure of this, but I believe these cases happen when the two placentas fuse, which does happen to fraternal twins. Problem is, most OB's would be happy to tell you that they are 100% positive that TTTS does NOT happen in fraternals. They wouldn't even consider it as a possibility if your babies are different in size, because that alone is common in fraternals. I met someone in an on-line twin pregnancy group who posted to us that when she went to deliver her fraternal twins, that one came out red as can be and passed within 4 hours, and the other, pale. This coloring is common of aggressive TTTS deliveries that have not been treated or for some reason was not able to be controlled. You will have the one getting too much blood, one not getting enough, thus the coloring changes. I wonder if this has happened in other fraternal twin births and the placenta was discarded or not looked at by the proper type of pathologist who knows about TTTS. There could be more cases of fraternals with TTTS that were not properly documented. And finally... 2) My friend Amber that I also met in this online twins group was told her twins were fraternal at her first ultrasound, then when she went for her next (she probably would have been seen sooner if her twins were thought to be identical) she had Stage III TTTS on a scale of 5.
Please please tell anyone you meet pregnant with twins about Twin-Twin Transfusion Syndrome. It means so much to me. Even if you can't remember what TTTS is, they can Google it and find out what the signs are.
Here's some more information if you are interested:
Info on TTTS from the Fetal Care Center in Cincinnati where we were treated:
http://www.cincinnatichildrens.org/service/f/fetal-care/conditions/ttts/default/
Video of laser surgery being preformed:
http://seraph.cchmc.org/MediasiteEX/Viewer/?peid=a81fe413-c9e1-4f45-a34a-63efd73c8d15
THANK YOU for helping me spread the awareness! You might save some babies' lives!
Wednesday, December 7, 2011
Monday, November 28, 2011
Half a year
Half a year ago, I woke up one morning of my hospital stay that was going on 6 weeks not knowing that it was going to be THE day. Half a year ago, we welcomed our miracle babies and became parents. I had no idea how the next 6 months were going to pan out, and how fast they would go by like everyone had always told me.
About a week and a half ago, we took the boys for their 6 month developmental check up with the developmental therapists that saw them in the NICU. They are doing great. I can't remember the exact months she pinned their development on for certain categories, but they were all between their adjusted and actual age, which is great! There were a couple things they were doing that 6 month olds do.
This morning, we took them for their 6 month check up with the pediatrician. They again said we were looking developmentally on track. The big thing we were wondering is what Parker's weight gain was since he is still hardly eating. The last time he was weighed there on November 3rd, he was 11lbs 11oz. Today he was 12 lbs! 5 ounces in 4 weeks is definitely not ideal, but he is not losing weight. The pediatrician says he is OK although he is not growing at the rate Leyton is. Oh ya Leyton. Poor guy! He weighed 14 lbs 9 oz! He is growing SO much. Back to Parker. We asked about his head shape, and the pediatrician does not think he needs a helmet. He says that Parker's head has a little asymmetry, but nothing major. Helmets are purely cosmetic. He said he has seen maybe 2 babies that TRULY needed them. At 4 months, Parker's left eye and cheek were sticking out a little more than the right side, but I no longer see that and neither does the pediatrician. His left ear is slightly more forward than the right still. We will probably take him back to the helmet doctor to see what they think, but our pediatrician thinks it will continue to round out like it has been doing. His head was literally an oval shape when he was born, and it looks MUCH better 6 months later :)
The boys are now giggling a lot. Parker smiles ALL the time. He is such a happy boy. Leyton doesn't pass out the smiles as freely. So far we have introduced squash and green beans to their diet. They LOVE squash. Green beans, not so much. They are both rolling over a lot, and getting stronger. Hopefully we will have some sitters soon! They still can't balance enough to be unsupported.
We put up our Christmas tree and decorations. I am so excited for the boys first Christmas even though they don't have any idea what is going on. We decided to take their 6 month picture tonight in their Thanksgiving outfits.
Leyton is on the left, Parker is on the right
About a week and a half ago, we took the boys for their 6 month developmental check up with the developmental therapists that saw them in the NICU. They are doing great. I can't remember the exact months she pinned their development on for certain categories, but they were all between their adjusted and actual age, which is great! There were a couple things they were doing that 6 month olds do.
This morning, we took them for their 6 month check up with the pediatrician. They again said we were looking developmentally on track. The big thing we were wondering is what Parker's weight gain was since he is still hardly eating. The last time he was weighed there on November 3rd, he was 11lbs 11oz. Today he was 12 lbs! 5 ounces in 4 weeks is definitely not ideal, but he is not losing weight. The pediatrician says he is OK although he is not growing at the rate Leyton is. Oh ya Leyton. Poor guy! He weighed 14 lbs 9 oz! He is growing SO much. Back to Parker. We asked about his head shape, and the pediatrician does not think he needs a helmet. He says that Parker's head has a little asymmetry, but nothing major. Helmets are purely cosmetic. He said he has seen maybe 2 babies that TRULY needed them. At 4 months, Parker's left eye and cheek were sticking out a little more than the right side, but I no longer see that and neither does the pediatrician. His left ear is slightly more forward than the right still. We will probably take him back to the helmet doctor to see what they think, but our pediatrician thinks it will continue to round out like it has been doing. His head was literally an oval shape when he was born, and it looks MUCH better 6 months later :)
The boys are now giggling a lot. Parker smiles ALL the time. He is such a happy boy. Leyton doesn't pass out the smiles as freely. So far we have introduced squash and green beans to their diet. They LOVE squash. Green beans, not so much. They are both rolling over a lot, and getting stronger. Hopefully we will have some sitters soon! They still can't balance enough to be unsupported.
We put up our Christmas tree and decorations. I am so excited for the boys first Christmas even though they don't have any idea what is going on. We decided to take their 6 month picture tonight in their Thanksgiving outfits.
Leyton is on the left, Parker is on the right
Tuesday, November 8, 2011
Visit with the GI doc. Ugh.
So today we took Parker to see a pediatric GI specialist. I was so relieved they were able to get in so quickly, and had such high hopes that this doctor would be able tell us what was wrong so we could end this struggle!
I was totally let down. I jokingly said when Parker was staring down the doctor that Parker was saying, "Can you tell them to stop feeding me? I don't like it." The doctor replied, "I just might." I knew exactly what he was going to say. So he started asking us about our family members heights, they weighed Parker (which according to their scale he had lost a couple of ounces) and measured his length. Then he sat down with his laptop and plugged in some numbers. He told us Parker's height to weight ratio was considered 50th percentile. He then proceeded to tell us that babies do not always trend upwards in the amount of food they eat. He said they will only take in the calories they need. Because we are concentrating his formula (as we were when sent home from the NICU, and started up again when the feeding trouble started) he said he is probably getting TOO MUCH to eat. How is 11-14 ounces a DAY too much for an 11lb baby? I understand he is getting much more calories in those 11-14 ounces because of the rice and concentrated formula, but come on. According to my calculations (I know I sound like a nerd) there is almost exactly 1 calorie in each mL of milk. So his averaging of 330-440 mL's a day is that many calories. The pediatrician has a formula for weight and how many calories the baby needs. That came out to 429 calories a day. That is what he needs to sustain. So if he was taking his maximum end of the average, that is OK, right??? Well, I told the GI doctor that he chugs the first ounce, then we force an additional 1-2 ounces down him. He told me to stop feeding him when he starts to resist. "So it's OK if he only takes 4oz in a day?" I asked. He said that is fine. I gave the doctor this go to hell look. I am sure with time he will realize he needs more. I just can't grasp the thought of my son deciding he only wants 4oz of food a day, what if he gets dehydrated, what if he catches some kind of bug and gets really sick because his body is weakened? I sure hope this guy is right.
So we came home, and I thought to myself that I would not feed him until he really acted hungry. He's barely taken 2oz since we've been home, a total of just under 6oz for the day. Again, this doctor BETTER be right!
I was totally let down. I jokingly said when Parker was staring down the doctor that Parker was saying, "Can you tell them to stop feeding me? I don't like it." The doctor replied, "I just might." I knew exactly what he was going to say. So he started asking us about our family members heights, they weighed Parker (which according to their scale he had lost a couple of ounces) and measured his length. Then he sat down with his laptop and plugged in some numbers. He told us Parker's height to weight ratio was considered 50th percentile. He then proceeded to tell us that babies do not always trend upwards in the amount of food they eat. He said they will only take in the calories they need. Because we are concentrating his formula (as we were when sent home from the NICU, and started up again when the feeding trouble started) he said he is probably getting TOO MUCH to eat. How is 11-14 ounces a DAY too much for an 11lb baby? I understand he is getting much more calories in those 11-14 ounces because of the rice and concentrated formula, but come on. According to my calculations (I know I sound like a nerd) there is almost exactly 1 calorie in each mL of milk. So his averaging of 330-440 mL's a day is that many calories. The pediatrician has a formula for weight and how many calories the baby needs. That came out to 429 calories a day. That is what he needs to sustain. So if he was taking his maximum end of the average, that is OK, right??? Well, I told the GI doctor that he chugs the first ounce, then we force an additional 1-2 ounces down him. He told me to stop feeding him when he starts to resist. "So it's OK if he only takes 4oz in a day?" I asked. He said that is fine. I gave the doctor this go to hell look. I am sure with time he will realize he needs more. I just can't grasp the thought of my son deciding he only wants 4oz of food a day, what if he gets dehydrated, what if he catches some kind of bug and gets really sick because his body is weakened? I sure hope this guy is right.
So we came home, and I thought to myself that I would not feed him until he really acted hungry. He's barely taken 2oz since we've been home, a total of just under 6oz for the day. Again, this doctor BETTER be right!
Saturday, November 5, 2011
5 months, and a little struggling.
Well, the boys are already 5 months old. We've had a lot going on this past month. The boys got their first shots to help protect against RSV. Since they are preemies, they are very susceptible and can have a more serious case compared to your normal baby. In a few weeks we will go to our first developmental therapy appointment since the NICU. We're curious to see what they have to say. They appear to be trending on track, with being behind in just a few areas.
Leyton's reflux has for the most part vanished. He's talking and smiling a lot, and even a little laughter here and there. He is trying to sit up already! He can do pretty good with a little help. He absolutely hates tummy time, but still can't figure out how to roll over. Whatever, kid. He has turned in to a thumb sucker, and is obsessed with putting his hands in his mouth. He's starting to drool a lot too, so I think he will be teething soon. Great. He's started a little rice cereal, but usually smiles and coos at me while I try to feed him, and is not terribly interested with it yet.
Parker has had some difficulty eating for about 5 weeks now. He had a barium swallow study done a few weeks ago, and they said thickening his bottles is what he needs in order to keep the liquid going down the right pipe. He's now on formula because he wasn't tolerating the breast milk very well. I would have had to go through my diet, one thing at a time for a week at a time to figure out what it was. I don't have the time or energy for that. So back to the eating problem. He sometimes throws a fit when you try to stick the bottle in his mouth. I took him to a feeding therapist, and that freaked him out even more and caused a few day set back. He's been going to the pediatrician about once a week so we can monitor his growth. He's been hardly gaining, and losing weight at times. After talking with my sister in law yesterday who was standing next to a neonatologist at work, we decided he has some kind of oral aversion, and need to get him in to a gastroenterologist as soon as possible. She said if we feel we need to, we should have him admitted to the hospital as failure to thrive. If he continues this downward trend on his feeds, I'm taking him. It is so hard as a mother to sit here and watch your child try to eat, physically incapable of doing so, and seeing the fear in his eyes as I force him to eat. He currently weighs only 11lbs 11oz; my friend has a 2 month old who weighs more than him. The pediatrician has me concentrating his formula, and adding a calorie powder to get him to take in what he needs. Based on his weight, he needs 430 calories a day. That equates to a little more than 14oz of his concentrated, thickened formula alone. If we can get him to take this, the additional 100 calories from the calorie powder will help him to grow. He's eating about 8-12oz a day. On a very good day, he will get to the 14oz. I just really hope we can get this figured out soon. We don't want him hating to eat too much longer, because that could cause a long term problem. I just feel like he has had to fight for his life since he was conceived, and it's not fair to him. Thank God he is in great spirits when you are not trying to feed him. Hoping we can get this figured out SOON!!!
Here is their 5 month old picture, all dressed up in their Halloween costumes
Leyton's reflux has for the most part vanished. He's talking and smiling a lot, and even a little laughter here and there. He is trying to sit up already! He can do pretty good with a little help. He absolutely hates tummy time, but still can't figure out how to roll over. Whatever, kid. He has turned in to a thumb sucker, and is obsessed with putting his hands in his mouth. He's starting to drool a lot too, so I think he will be teething soon. Great. He's started a little rice cereal, but usually smiles and coos at me while I try to feed him, and is not terribly interested with it yet.
Parker has had some difficulty eating for about 5 weeks now. He had a barium swallow study done a few weeks ago, and they said thickening his bottles is what he needs in order to keep the liquid going down the right pipe. He's now on formula because he wasn't tolerating the breast milk very well. I would have had to go through my diet, one thing at a time for a week at a time to figure out what it was. I don't have the time or energy for that. So back to the eating problem. He sometimes throws a fit when you try to stick the bottle in his mouth. I took him to a feeding therapist, and that freaked him out even more and caused a few day set back. He's been going to the pediatrician about once a week so we can monitor his growth. He's been hardly gaining, and losing weight at times. After talking with my sister in law yesterday who was standing next to a neonatologist at work, we decided he has some kind of oral aversion, and need to get him in to a gastroenterologist as soon as possible. She said if we feel we need to, we should have him admitted to the hospital as failure to thrive. If he continues this downward trend on his feeds, I'm taking him. It is so hard as a mother to sit here and watch your child try to eat, physically incapable of doing so, and seeing the fear in his eyes as I force him to eat. He currently weighs only 11lbs 11oz; my friend has a 2 month old who weighs more than him. The pediatrician has me concentrating his formula, and adding a calorie powder to get him to take in what he needs. Based on his weight, he needs 430 calories a day. That equates to a little more than 14oz of his concentrated, thickened formula alone. If we can get him to take this, the additional 100 calories from the calorie powder will help him to grow. He's eating about 8-12oz a day. On a very good day, he will get to the 14oz. I just really hope we can get this figured out soon. We don't want him hating to eat too much longer, because that could cause a long term problem. I just feel like he has had to fight for his life since he was conceived, and it's not fair to him. Thank God he is in great spirits when you are not trying to feed him. Hoping we can get this figured out SOON!!!
Here is their 5 month old picture, all dressed up in their Halloween costumes
Wednesday, September 28, 2011
4 months... Where has the time gone?
I cannot believe my miracle babies are 4 months old. What the heck? They are getting SO big! They are so happy despite the around the clock barfing.
We took the boys to the pediatrician last month for their 4 month check-up. Leyton was 12lbs 7oz and Parker 11lbs 13oz! He is really catching up to Leyton! Leyton finally made it on the percentile charts. They have both been in the less than 5th percentile group. Leyton was in the 10th and 5th on some things, I think it was head and weight respectively, and that his length he was still in the less than 5th group. Each time we go, we fill out a developmental survey. Both boys are on track developmentally for a 4 month old baby! I was so glad because I thought this time they were going to show behind, but there was only 1 thing each baby isn't doing that I had to say no for on the survey. I am taking them to the developmental therapist they saw in the NICU in November for a 6 month check-up just to make sure. Leyton will probably roll over in the next week, but I'm not sure about Parker. It's hard for them to spend more than 30 minutes a day on their tummies with this reflux. I'm not too worried about it though, I am more interested in the sitting up. They love to sit up with me holding their hands. They are so smily now. Leyton coos a lot too in response to you talking. He will carry on a conversation with you. Parker coos too, but not allllllll the time like Leyton does. Leyton will sit in his bouncer seat and talk to the pig and cow that are hanging from the toy bar. It's hilarious!
Tomorrow I am taking Parker to the head doctor. He was born with a football head. It was SO long when he was born, and we were hoping it would round out but it's just not. Because it was so hard for him to lay on the back of his head, he has always had to lay his head to the side. Ever since he got home from the NICU, we noticed he preferred his left side. I have been turning his head to the right in a stretching fashion, but he still prefers that left side so much that it is getting a flat spot. There are also a couple of spots on the back right of his head that bulge out, and they kind of look like a knot where he hit his head. I really think he needs to be in a helmet, so I had the pediatrician refer us. I feel really bad that Parker will have to wear a helmet and Leyton won't, but I just keep telling myself I don't want him to have a deformed head. The head shape is one of the few ways I can tell them apart now. If Parker's head was normal, they would really look identical like they are supposed to, so in that way, I am excited for him to have a helmet.
The reflux is still going on. We are still doing our drop technique to get them to keep it down, and that isn't working as quickly as it used to. Mommy is getting a workout doing it all of the time! Hopefully only a couple more months of this garbage.
I finally tried the cloth diapers I bought. They were SO bulky, so I returned the ones I hadn't opened and acutally did a little more research. I guess I was looking in the wrong place before because the diapers I purchased got not so hot reviews from Amazon. I bought some bumGenius diapers instead. They are really neat because the one diaper will fit them until they are out of diapers! They are really cool. It's the outer cover with a fluffy liner thingy sewn in. You stuff this microfiber cloth inside, and then it just looks like a regular diaper. I have these liners that you put inside the diaper to help with the poopy diapers. I've tried 2 different ones so far, ones that look like dryer sheets and ones that are like paper towels. I will tell you what. If it wasn't for those liners there is NO WAY I would cloth diaper my kids. When they poop, you just pull the liner out and flush it with the poop, and there is usually NO poop on the diaper itself. I throw the wet diapers in a bin, and wash the diapers once a day in my washing machine, and hang dry them. You have to hang dry the outside cover, I'm guessing because of the waterproof material. If I have a load of the boys clothes, I will just toss the microfiber things in with those to dry, but I have been hanging those up outside also if not. So far what I have spent on the diapers is about 3 months worth of disposable diapers would cost me. After that, it's just the cost of the extra water, detergent, and wear and tear on my washer, and of course about 15 minutes of my time each day. I'd say it's well worth it and recommend to anyone! Cloth diapering is MUCH easier than I thought it would be!
The pediatrician told us was that we could begin to spoon feed if we felt they were ready. I tried a little rice on Parker, and he loved opening his mouth for the spoon! It was so cute! Then I went on to Leyton, and he just cried the whole time! I tried the next day and got the same reaction. Right now it is just practice for Parker because he's not really eating but a teaspoon the whole sitting. I have to stop when that gag reflex kicks in and barf face comes. Stupid barf face.
Here's a couple pictures I took of them today:
We took the boys to the pediatrician last month for their 4 month check-up. Leyton was 12lbs 7oz and Parker 11lbs 13oz! He is really catching up to Leyton! Leyton finally made it on the percentile charts. They have both been in the less than 5th percentile group. Leyton was in the 10th and 5th on some things, I think it was head and weight respectively, and that his length he was still in the less than 5th group. Each time we go, we fill out a developmental survey. Both boys are on track developmentally for a 4 month old baby! I was so glad because I thought this time they were going to show behind, but there was only 1 thing each baby isn't doing that I had to say no for on the survey. I am taking them to the developmental therapist they saw in the NICU in November for a 6 month check-up just to make sure. Leyton will probably roll over in the next week, but I'm not sure about Parker. It's hard for them to spend more than 30 minutes a day on their tummies with this reflux. I'm not too worried about it though, I am more interested in the sitting up. They love to sit up with me holding their hands. They are so smily now. Leyton coos a lot too in response to you talking. He will carry on a conversation with you. Parker coos too, but not allllllll the time like Leyton does. Leyton will sit in his bouncer seat and talk to the pig and cow that are hanging from the toy bar. It's hilarious!
Tomorrow I am taking Parker to the head doctor. He was born with a football head. It was SO long when he was born, and we were hoping it would round out but it's just not. Because it was so hard for him to lay on the back of his head, he has always had to lay his head to the side. Ever since he got home from the NICU, we noticed he preferred his left side. I have been turning his head to the right in a stretching fashion, but he still prefers that left side so much that it is getting a flat spot. There are also a couple of spots on the back right of his head that bulge out, and they kind of look like a knot where he hit his head. I really think he needs to be in a helmet, so I had the pediatrician refer us. I feel really bad that Parker will have to wear a helmet and Leyton won't, but I just keep telling myself I don't want him to have a deformed head. The head shape is one of the few ways I can tell them apart now. If Parker's head was normal, they would really look identical like they are supposed to, so in that way, I am excited for him to have a helmet.
The reflux is still going on. We are still doing our drop technique to get them to keep it down, and that isn't working as quickly as it used to. Mommy is getting a workout doing it all of the time! Hopefully only a couple more months of this garbage.
I finally tried the cloth diapers I bought. They were SO bulky, so I returned the ones I hadn't opened and acutally did a little more research. I guess I was looking in the wrong place before because the diapers I purchased got not so hot reviews from Amazon. I bought some bumGenius diapers instead. They are really neat because the one diaper will fit them until they are out of diapers! They are really cool. It's the outer cover with a fluffy liner thingy sewn in. You stuff this microfiber cloth inside, and then it just looks like a regular diaper. I have these liners that you put inside the diaper to help with the poopy diapers. I've tried 2 different ones so far, ones that look like dryer sheets and ones that are like paper towels. I will tell you what. If it wasn't for those liners there is NO WAY I would cloth diaper my kids. When they poop, you just pull the liner out and flush it with the poop, and there is usually NO poop on the diaper itself. I throw the wet diapers in a bin, and wash the diapers once a day in my washing machine, and hang dry them. You have to hang dry the outside cover, I'm guessing because of the waterproof material. If I have a load of the boys clothes, I will just toss the microfiber things in with those to dry, but I have been hanging those up outside also if not. So far what I have spent on the diapers is about 3 months worth of disposable diapers would cost me. After that, it's just the cost of the extra water, detergent, and wear and tear on my washer, and of course about 15 minutes of my time each day. I'd say it's well worth it and recommend to anyone! Cloth diapering is MUCH easier than I thought it would be!
The pediatrician told us was that we could begin to spoon feed if we felt they were ready. I tried a little rice on Parker, and he loved opening his mouth for the spoon! It was so cute! Then I went on to Leyton, and he just cried the whole time! I tried the next day and got the same reaction. Right now it is just practice for Parker because he's not really eating but a teaspoon the whole sitting. I have to stop when that gag reflex kicks in and barf face comes. Stupid barf face.
Here's a couple pictures I took of them today:
Wednesday, September 14, 2011
3 month update
The boys turned 3 months at the end of August. I have been meaning to update everyone forever, but when you have twins, trust me, your free time is very limited! I am still also working on getting out my thank you cards and birth announcements, so do not be offended if you have not received one yet; I have not forgotten!
The boys are growing like weeds. It's hard to believe they were 2.5 & 4.5 pounds at birth! Parker weighs around 10lbs and Leyton around 12lbs. Both appear to have minor setbacks developmentally, but theoretically they are supposed to be 2 months behind on all their developmental milestones since they were 2 months early, so considering that, they are about half way between their actual age and their adjusted age developmentally - I think. They saw a developmental therapist in the NICU and will see them again in November.
The boys also had their first ECHO since birth mid August. I'm sure you assume you would have heard if something was wrong. The good news is after being able to better see Leyton's heart, they confirmed that it is entirely normal, and nothing was damaged due to the Twin-Twin Transfusion Syndrome! In the NICU, someone heard a tiny murmur in Parker, and the ECHO showed that he has a very normal murmur for infants. It is an innocent murmur, which he will grow out of. One of the vessels (not sure if I'm describing it correctly) is small, so it makes a swoosh. It will become less audible as he grows. Leyton also has this, but this was the first time we heard about it! We go back in February to make sure that the murmurs are gone, and that the tiny holes that most infants have when born are closed.
We are so lucky to have the continued support of Grammy, Grams, & Pappy. They take turns staying the night with us Monday-Thursday. The boys are getting much better about sleeping through the night. For about a month now, they have been sleeping anywhere from 5-9 hours at night! We still have our occasional crabby night, which brings me to the reason they are not doing as well as they could be....
....REFLUX. They were diagnosed at their 2 month check-up, and we actually went back to the doctor a few weeks ago to get our questions cleared up. A lot of babies have reflux, due to a sphincter in their esophagus' not working properly. About half of babies outgrow it by 6 months, and most by 1 year. They were having difficulty eating, but now they are on Prevacid, which helps reduce the acid in their tummies. Feedings are so much easier now in that regard. They are still barfing though... Some days it's at the end of every feed, sometimes it's just a couple times a day. Could be just a little, sometimes it's a lot. We have learned "the barf face" and trained our helpers on barf face. When you see it, you run to the tile, and if you think they are going to barf and can't intervene, you go to the sink. If you catch barf face early enough and they haven't instantly soaked you, we are trying a new technique Rick came up with. We hold them out in front of us and drop them quickly. Rick thinks this causes the gravity to force it back down. So far, it has been about 75% effective! We really like this, because barfing for the boys is no fun. It hurts them so much. It comes out their nose, not to mention all the hard work they just did to eat is gone. Parker cries hysterically after barfing, and sometimes makes mommy cry for him too. Leyton is a much better barfer than Parker. He usually just fusses a little after he barfs. We burp them frequently, and keep them elevated after feedings. This seems to help a little. They have these crazy wedge pillows that have harnesses on them so they can sleep at a 30 degree angle. Parker HATES it, Leyton usually could care less. They look like they are parachuting. Poor kids. We cannot wait until they outgrow this. It makes it so hard for us to leave the house with them!
Here they are parachuting:
And here is one we took on their 3 month birthday:
The boys are growing like weeds. It's hard to believe they were 2.5 & 4.5 pounds at birth! Parker weighs around 10lbs and Leyton around 12lbs. Both appear to have minor setbacks developmentally, but theoretically they are supposed to be 2 months behind on all their developmental milestones since they were 2 months early, so considering that, they are about half way between their actual age and their adjusted age developmentally - I think. They saw a developmental therapist in the NICU and will see them again in November.
The boys also had their first ECHO since birth mid August. I'm sure you assume you would have heard if something was wrong. The good news is after being able to better see Leyton's heart, they confirmed that it is entirely normal, and nothing was damaged due to the Twin-Twin Transfusion Syndrome! In the NICU, someone heard a tiny murmur in Parker, and the ECHO showed that he has a very normal murmur for infants. It is an innocent murmur, which he will grow out of. One of the vessels (not sure if I'm describing it correctly) is small, so it makes a swoosh. It will become less audible as he grows. Leyton also has this, but this was the first time we heard about it! We go back in February to make sure that the murmurs are gone, and that the tiny holes that most infants have when born are closed.
We are so lucky to have the continued support of Grammy, Grams, & Pappy. They take turns staying the night with us Monday-Thursday. The boys are getting much better about sleeping through the night. For about a month now, they have been sleeping anywhere from 5-9 hours at night! We still have our occasional crabby night, which brings me to the reason they are not doing as well as they could be....
....REFLUX. They were diagnosed at their 2 month check-up, and we actually went back to the doctor a few weeks ago to get our questions cleared up. A lot of babies have reflux, due to a sphincter in their esophagus' not working properly. About half of babies outgrow it by 6 months, and most by 1 year. They were having difficulty eating, but now they are on Prevacid, which helps reduce the acid in their tummies. Feedings are so much easier now in that regard. They are still barfing though... Some days it's at the end of every feed, sometimes it's just a couple times a day. Could be just a little, sometimes it's a lot. We have learned "the barf face" and trained our helpers on barf face. When you see it, you run to the tile, and if you think they are going to barf and can't intervene, you go to the sink. If you catch barf face early enough and they haven't instantly soaked you, we are trying a new technique Rick came up with. We hold them out in front of us and drop them quickly. Rick thinks this causes the gravity to force it back down. So far, it has been about 75% effective! We really like this, because barfing for the boys is no fun. It hurts them so much. It comes out their nose, not to mention all the hard work they just did to eat is gone. Parker cries hysterically after barfing, and sometimes makes mommy cry for him too. Leyton is a much better barfer than Parker. He usually just fusses a little after he barfs. We burp them frequently, and keep them elevated after feedings. This seems to help a little. They have these crazy wedge pillows that have harnesses on them so they can sleep at a 30 degree angle. Parker HATES it, Leyton usually could care less. They look like they are parachuting. Poor kids. We cannot wait until they outgrow this. It makes it so hard for us to leave the house with them!
Here they are parachuting:
And here is one we took on their 3 month birthday:
Wednesday, August 24, 2011
Welcome to our new blog site!
I'm transitioning away from the Caring Bridge site now that the boys are here and I'd like to blog about the family and not necessarily their health. My first entry will be about our pregnancy, and summarizing everything that went on for those who missed it. Enjoy!
Link to our Caring Bridge site
Link to our Caring Bridge site
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