Todd often gets the label of being the shy, timid baby because Kyle is SO dominant. However, if you ever believe for one moment that Todd backs down...watch out.
We have recently been having problems with Todd eating dinner. The child is starving when he gets home from school so I have a deal with him that he can have 3 small snacks and no more. If he then does not eat dinner he can only have 1 small snack the next day. He also is not allowed to have any "treats" after dinner. Kevin gets even worse...he says if Todd does not eat within a reasonable time frame he cannot have the treat either.
The other night Todd was being a pain again with not eating dinner. We had all finished and Kyle had happily gotten his treat and was already brushing his teeth. Todd, stalling as usual finally finished his dinner. He took his plate/cup into the kitchen to Kevin and asked about his treat. Kevin started on the "you did not eat quick enough" speech...Todd was quite indignant. Gesturing quite rapidly while still holding his plate he is telling Kevin...."but look...I ate it all...Daddy, what the hell?" Perfect context (of course) with a perfect facial expression.
I looked at Kevin to see if I heard correctly. By this time Kevin is trying not to laugh but really...it was just way too hard. If you could have seen his face...oh man. After Todd got his treat and we stopped laughing I had to inform him about not using that language and if he did it again he would get the mouth with soap treatment.
And, I do not have any scheduled doctors appointments for the next two weeks...so I will not have any updates on the baby until then. Actually a relief to not have to be at a doctor's office for a bit.
Thursday, April 9, 2009
Tuesday, April 7, 2009
Baby Update
First, thank you all for your understanding and patience while Kevin and I have been going around and around getting answers and figuring out where we go from here.
Second, I am not posting here to avoid talking to anyone. Please do not feel any less of our friend if you are reading this instead of having personally talked to us. This is quite honestly the easiest way for me to communicate without having to tell and retell what is going on.
Third, thank you for caring and praying for us even if you were not exactly sure why. Please keep praying...we need prayers. I will try and explain what I know but I will of course leave things out.
March 18 -
I went to my regular scheduled appointment at Maternal Fetal Medicine. I am seeing the high risk perinatologists because I will be 35 when the baby is born. That is the only reason. I have no other risk factors making me high risk. Without this appointment, we never would have caught the problem. As Kevin and I were watching the screen as the ultrasound was being conducted we did not notice anything unusual. Seemed like all was fine...except the sonographer kept looking at the heart...for a very long time. The doctor came into the room twice to see the screen as the sonographer was looking as well. When he came back for the third time he was there to talk to us. He told us there is a problem with the baby's heart. A very serious problem. Since we were in shock he wrote down what he suspected was wrong...aortic atresia, ventricular septal defect and then dandy-walker syndrome. I am very thankful Kevin was with me. The perinatologist could not really answer the few questions we had...Kevin asked who could. We were referred to All Children's Hospital in St. Pete. I know most people (including me) have no idea what this suspected diagnosis means. Here is what it means...when discussing options with the perinatologist his first suggestion was termination. We were stunned. The names sounded horrible but what are we really looking at????
March 23 -
I return to MFM for a follow-up appointment and for an amniocentesis. This time we saw the head perinatologist. He is supposed to be the best and he is. He confirmed the original diagnosis and did the amnio. He put a name and meaning to the diagnosis. Hypoplastic Left Heart Syndrome. This is the worst of the worst of congenital heart defects. He said his opinion was that there would be no functioning left heart at delivery. Without major open heart surgery the baby would die. I followed through with the amnio, mostly to get answers.
March 24 -
Kevin and I had the first (of what will become many, many, many echocardiograms) on the baby at All Childrens Hospital. We were not too hopeful for this ultrasound or our meeting with the Pediactric Cardiologist. After an hour the sonographer was finally able to get some good clear shots of the baby's heart....stubborn little bugger kept putting hands or arms across the body covering the heart or turning completely around and hiding. We had our consultation with the medical director for the cardiac care team. This doctor is awesome. When I say awesome...I mean he is one of the best in the country if not the world in his field. He looked at the baby's heart and diagnosed...Double Output Right Ventricle. Not the worst of the worst but still an extremely serious congential heart defect. Here is the difference...in HLHS there is no left ventricle in addition to the aorta and aortic arch not being fully funtioning/attached. In DORV the aorta and aortic arch are fine it is just that there is only one ventricle to pump the heart. DORV does not require full on open heart surgery at birth...small relief. DORV does require a sequence of 3 surgeries...one soon after birth to place a shunt between the main arteries to keep blood flow to the lungs, one around 6 months to replace the shunt with a surgical fix between the main veins and the last one around 2 years of age to complete the full surgical procedure that will allow one major vein to connect to the heart and one to connect directly to the lungs. Eliminating the need of the one ventricle heart to pump blood to both the lungs and the rest of the body. In no way is this a cure. The baby's heart will never be normal. This is a way to provide a way for the baby to grow and develop and have a relatively normal life. Predicted life span is around 40.
March 25 -
I get the results from the rapid testing from the amnio. There is no indication of a chromosonal issue. All the chromosones are there. No downs syndrome, no trisomy.
April 1 -
I get the full panel results from the amnio. Confirmation that there is no chromosonal problem.
April 2 -
Kevin and I spoke to the cardiac team nurse with some additional questions we had. We got the answers we were looking for. There are still major risks to any and all all of the surgeries. There is still great risk of problems and complications while the baby is in utereo. Our management and treatment plan all hinge on my carrying the baby to full term with no chromosone issues and normal development of the baby.
April 6 -
We have our next appointment with the perinatologist at MFM. Have an ultrasound and discussion with the head doctor again. He scared the crap out of us. All hope I had from the doctor at ACH was gone. MFM doctor says everything looks the same (which in this case is good) but there are new studies showing brain injury in children with these types of heart defects and surgeries. The doctor at ACH touched on this as well but the MFM doctor implied there could be many more problems that ACH was not telling us (like cerebal palsy). Doctors not on same page...really not good...how do you decide which expert you trust the most.
April 7 -
Spoke with the ACH nurse again. She confimed what we had learned on our first visit. Other than the heart, everything else looked as if it was developing normally with good blood flow to the brain. Grrr....
Got the last of the amnio results...a sequence with a small deletion on the number 22 chromosone that shows quite frequently with heart defects...and again...no problem. There is no 22 deletion.
So. Here is what we face. A baby with a very serious congenital heart defect. One of the best pediatric cardiac teams in the country to manage and care for the baby. A very early diagnosis allowing for better monitoring of the situation. Two experts that may not exactly be on the same page. Still a lot of possible risk and complications that will not be known until delivery and/or for some time after birth.
What we really need. Lots and lots of prayers. They are already working.
Our baby (right now) has only one problem...congenital heart defect. No chromosone issues that are typically linked with DORV. The baby is a fighter.
Please pray for this baby to develop normally with good blood flow to the brain. We need for this baby to be otherwise healthy and full term to have the best shot of surviving the three surgeries with the least possible side effects and/or complications. The boys do not know of these problems with the baby. We have chosen not to tell them as it would only upset them and not do any good. They will learn all when it is necessary. We also do not want to get them in the habit of treating the baby special or different...from all indiciations the baby will be relatively normal and we need to keep that normalcy in our lives. If you have questions we are willing to answer them so please ask. Again...thank you for allowing Kevin and I our space as we found out answers and came to terms with what we are facing.
And Kyle was right...he is getting a baby sister. He knew all along.
Second, I am not posting here to avoid talking to anyone. Please do not feel any less of our friend if you are reading this instead of having personally talked to us. This is quite honestly the easiest way for me to communicate without having to tell and retell what is going on.
Third, thank you for caring and praying for us even if you were not exactly sure why. Please keep praying...we need prayers. I will try and explain what I know but I will of course leave things out.
March 18 -
I went to my regular scheduled appointment at Maternal Fetal Medicine. I am seeing the high risk perinatologists because I will be 35 when the baby is born. That is the only reason. I have no other risk factors making me high risk. Without this appointment, we never would have caught the problem. As Kevin and I were watching the screen as the ultrasound was being conducted we did not notice anything unusual. Seemed like all was fine...except the sonographer kept looking at the heart...for a very long time. The doctor came into the room twice to see the screen as the sonographer was looking as well. When he came back for the third time he was there to talk to us. He told us there is a problem with the baby's heart. A very serious problem. Since we were in shock he wrote down what he suspected was wrong...aortic atresia, ventricular septal defect and then dandy-walker syndrome. I am very thankful Kevin was with me. The perinatologist could not really answer the few questions we had...Kevin asked who could. We were referred to All Children's Hospital in St. Pete. I know most people (including me) have no idea what this suspected diagnosis means. Here is what it means...when discussing options with the perinatologist his first suggestion was termination. We were stunned. The names sounded horrible but what are we really looking at????
March 23 -
I return to MFM for a follow-up appointment and for an amniocentesis. This time we saw the head perinatologist. He is supposed to be the best and he is. He confirmed the original diagnosis and did the amnio. He put a name and meaning to the diagnosis. Hypoplastic Left Heart Syndrome. This is the worst of the worst of congenital heart defects. He said his opinion was that there would be no functioning left heart at delivery. Without major open heart surgery the baby would die. I followed through with the amnio, mostly to get answers.
March 24 -
Kevin and I had the first (of what will become many, many, many echocardiograms) on the baby at All Childrens Hospital. We were not too hopeful for this ultrasound or our meeting with the Pediactric Cardiologist. After an hour the sonographer was finally able to get some good clear shots of the baby's heart....stubborn little bugger kept putting hands or arms across the body covering the heart or turning completely around and hiding. We had our consultation with the medical director for the cardiac care team. This doctor is awesome. When I say awesome...I mean he is one of the best in the country if not the world in his field. He looked at the baby's heart and diagnosed...Double Output Right Ventricle. Not the worst of the worst but still an extremely serious congential heart defect. Here is the difference...in HLHS there is no left ventricle in addition to the aorta and aortic arch not being fully funtioning/attached. In DORV the aorta and aortic arch are fine it is just that there is only one ventricle to pump the heart. DORV does not require full on open heart surgery at birth...small relief. DORV does require a sequence of 3 surgeries...one soon after birth to place a shunt between the main arteries to keep blood flow to the lungs, one around 6 months to replace the shunt with a surgical fix between the main veins and the last one around 2 years of age to complete the full surgical procedure that will allow one major vein to connect to the heart and one to connect directly to the lungs. Eliminating the need of the one ventricle heart to pump blood to both the lungs and the rest of the body. In no way is this a cure. The baby's heart will never be normal. This is a way to provide a way for the baby to grow and develop and have a relatively normal life. Predicted life span is around 40.
March 25 -
I get the results from the rapid testing from the amnio. There is no indication of a chromosonal issue. All the chromosones are there. No downs syndrome, no trisomy.
April 1 -
I get the full panel results from the amnio. Confirmation that there is no chromosonal problem.
April 2 -
Kevin and I spoke to the cardiac team nurse with some additional questions we had. We got the answers we were looking for. There are still major risks to any and all all of the surgeries. There is still great risk of problems and complications while the baby is in utereo. Our management and treatment plan all hinge on my carrying the baby to full term with no chromosone issues and normal development of the baby.
April 6 -
We have our next appointment with the perinatologist at MFM. Have an ultrasound and discussion with the head doctor again. He scared the crap out of us. All hope I had from the doctor at ACH was gone. MFM doctor says everything looks the same (which in this case is good) but there are new studies showing brain injury in children with these types of heart defects and surgeries. The doctor at ACH touched on this as well but the MFM doctor implied there could be many more problems that ACH was not telling us (like cerebal palsy). Doctors not on same page...really not good...how do you decide which expert you trust the most.
April 7 -
Spoke with the ACH nurse again. She confimed what we had learned on our first visit. Other than the heart, everything else looked as if it was developing normally with good blood flow to the brain. Grrr....
Got the last of the amnio results...a sequence with a small deletion on the number 22 chromosone that shows quite frequently with heart defects...and again...no problem. There is no 22 deletion.
So. Here is what we face. A baby with a very serious congenital heart defect. One of the best pediatric cardiac teams in the country to manage and care for the baby. A very early diagnosis allowing for better monitoring of the situation. Two experts that may not exactly be on the same page. Still a lot of possible risk and complications that will not be known until delivery and/or for some time after birth.
What we really need. Lots and lots of prayers. They are already working.
Our baby (right now) has only one problem...congenital heart defect. No chromosone issues that are typically linked with DORV. The baby is a fighter.
Please pray for this baby to develop normally with good blood flow to the brain. We need for this baby to be otherwise healthy and full term to have the best shot of surviving the three surgeries with the least possible side effects and/or complications. The boys do not know of these problems with the baby. We have chosen not to tell them as it would only upset them and not do any good. They will learn all when it is necessary. We also do not want to get them in the habit of treating the baby special or different...from all indiciations the baby will be relatively normal and we need to keep that normalcy in our lives. If you have questions we are willing to answer them so please ask. Again...thank you for allowing Kevin and I our space as we found out answers and came to terms with what we are facing.
And Kyle was right...he is getting a baby sister. He knew all along.
Monday, March 9, 2009
Kyle is Reading!
He is just so proud of himself. I really want to believe that he is actually reading however I think some may be memorization from school. He had Dr. Seuss week all last week and they read all the books. We have most of them at home as well and he wanted to read to us. So, as he was reading I noticed he seemed to be remembering the words on each page from being read to at school. But he does sound words out and uses the grammer rules he is learning at school.
Through this new experience I am reminded yet once again why I am NOT a teacher. God bless his teacher and all teachers everywhere for having the diligence and patience to teach our children.
Through this new experience I am reminded yet once again why I am NOT a teacher. God bless his teacher and all teachers everywhere for having the diligence and patience to teach our children.
Friday, February 20, 2009
Cold Heart, Cold Bath
Last Wednesday my boys had a baby sitter while my husband and I were out. Since this is a regular occurrence the boys know the routine when we are gone. I, of course, reiterated the necessary things to be done while we were gone (mostly for the benefit of the girls who were watching my boys).
1. Take a bath.
2. Brush your teeth.
3. Put on underwear and pj's.
After you are ready for bed you can watch some tv or read some books.
Being a school night with the boys having to get up the next day at 6:30am and us not generally getting home until 8pm, it is important to have this stuff done so they can get in bed as soon as we get home.We get home and absolutely nothing has been accomplished (since they were playing soccer, in.the.house). Grrrrrr.....
So, I tell the boys to get in the bath, and "I mean now." The bath water did not have enough time to warm up. You would have thought I was killing the boys with all the screaming and howling that was going on. To make it so much worse, I insisted that they sit down in the tub while bathing and dumped LOTS of water over their heads to make sure I got all the shampoo out of their hair...he he. Oh well, guess next time you will take your bath when I tell you or I will be hauled away by DCF after the neighbors complain.
1. Take a bath.
2. Brush your teeth.
3. Put on underwear and pj's.
After you are ready for bed you can watch some tv or read some books.
Being a school night with the boys having to get up the next day at 6:30am and us not generally getting home until 8pm, it is important to have this stuff done so they can get in bed as soon as we get home.We get home and absolutely nothing has been accomplished (since they were playing soccer, in.the.house). Grrrrrr.....
So, I tell the boys to get in the bath, and "I mean now." The bath water did not have enough time to warm up. You would have thought I was killing the boys with all the screaming and howling that was going on. To make it so much worse, I insisted that they sit down in the tub while bathing and dumped LOTS of water over their heads to make sure I got all the shampoo out of their hair...he he. Oh well, guess next time you will take your bath when I tell you or I will be hauled away by DCF after the neighbors complain.
Tuesday, February 17, 2009
Cosmic Laughing
Really? Are you kidding me?
After going through the miscarriage last year and having time to really just appreciate my family for they way it was, Kevin and I came to the conclusion that we were okay with things the way they are. Two boys. Perfect. We are all okay.
Then bam! Out of the blue...I am pregnant. Currently at 13 weeks. Baby is strong and healthy. I have already had 3 ultrasounds. So weird to be considered at advanced maternal age due to me being 35 when the baby is born. However, it is pretty cool to see the baby so often.
We did not tell anyone about this new baby until now. Not even the boys knew until Sunday. I am a touch paranoid and of course I really do not have a physically easy pregnancy. I am blessed that for the most part every bad feeling I have is "cosmetic." I do no have any real health issues, for me or the baby. Being sick all day, every day is awful. This time I am not taking any anti-depressants as I have been off medication for well over a year now. Depression is terrible and insidious. I think I may be turning the corner.
Now to the really funny part...
Kevin and I did a lot of talking and thinking over the last year. We decided that what was best for all of us was to not have any more kids. I started giving away all the baby clothes, most of my baby furniture sold at consignment. Kevin had a vasectomy in December.
Again, really?
So, I have determined that my sense of control over my life is actually a very pretty illusion. There are greater forces out there at work. Kevin's procedure was about 3 weeks too late...I was already pregnant. Good for him we did not know that at the time. Now knowing what all is entailed I am not too sure he would be so quick to agree.
There you have it...an auspicious start for who will be our youngest and very last baby.
After going through the miscarriage last year and having time to really just appreciate my family for they way it was, Kevin and I came to the conclusion that we were okay with things the way they are. Two boys. Perfect. We are all okay.
Then bam! Out of the blue...I am pregnant. Currently at 13 weeks. Baby is strong and healthy. I have already had 3 ultrasounds. So weird to be considered at advanced maternal age due to me being 35 when the baby is born. However, it is pretty cool to see the baby so often.
We did not tell anyone about this new baby until now. Not even the boys knew until Sunday. I am a touch paranoid and of course I really do not have a physically easy pregnancy. I am blessed that for the most part every bad feeling I have is "cosmetic." I do no have any real health issues, for me or the baby. Being sick all day, every day is awful. This time I am not taking any anti-depressants as I have been off medication for well over a year now. Depression is terrible and insidious. I think I may be turning the corner.
Now to the really funny part...
Kevin and I did a lot of talking and thinking over the last year. We decided that what was best for all of us was to not have any more kids. I started giving away all the baby clothes, most of my baby furniture sold at consignment. Kevin had a vasectomy in December.
Again, really?
So, I have determined that my sense of control over my life is actually a very pretty illusion. There are greater forces out there at work. Kevin's procedure was about 3 weeks too late...I was already pregnant. Good for him we did not know that at the time. Now knowing what all is entailed I am not too sure he would be so quick to agree.
There you have it...an auspicious start for who will be our youngest and very last baby.
Monday, February 9, 2009
Don't Move Me
Kevin and I have tried really hard since Kyle was born to not allow the kids to sleep in our bed whenever they want to. Some may think this is selfishness on our part but honestly we just wanted to keep our room and particularly our bed sacred to just us. Of course, just like every rule, there have been many exceptions. For example if one of the kiddos is sick, they can sleep with us. If one of them is scared and comes into our room we certainly do not kick them out and tell them to "deal with it" (I think I may be losing some worst mama points here).
Since the boys have been older (ie we are able to reason with them) we have been allowing more sleeping in our bed. Mostly it started with Friday night movie in our bed. We generally use Friday night as our "fun night out" with the boys. We go to dinner (their choice...groan...pizza again...no wonder I can't lose weight) and then either buy a movie (if it is like say $5 or less) or rent a movie. The kiddos then get to watch said movie, staying up way too late but hey, it is Friday after all. Kevin and I have seen lots and lots of kids movies...many, many times...so we tell them they can watch their movie in our room because there are only 2 dvd players. One in the main room with big tv and one in our room. Needless to say this practice has recently developed into the boys wanting to sleep in our bed all night. I think Kevin just gives in, not sure, but somehow the boys end up in bed with me all night.
So, the kiddos slept with me Friday night. Well Saturday night came around and the boys wanted to sleep with me again. Kevin was like....uh, no. But giving in we let them watch a movie and then fall asleep in the bed with the intention of moving them to their own bed later. I am the first in bed, Kyle just went to sleep but considering it was somewhat late for him I thought he was really asleep. Apparently not. Kevin comes in a little after me and goes to get Kyle and move him. Everything is all quiet and dark...the only sound is the kiddos slow, even, deep breathing. Kevin leans over and right as he is about to touch Kyle...Kyle says very loudly and very clearly...Don't MOVE Me. Kevin, somewhat startled, starts to laugh. As quietly as possible. I start to laugh. Kyle, hoping to impress on both of us that we can all sleep in the same bed then says in his sleep mumble...again, don't me move, I move over, and then proceeds to toss Todd half way across the bed to make room for Kevin. All poor Todd did was get up close next to his brother on Kevin's side of the bed. All I can see is Kyle pushing Todd and Todd violently rolling over with a very loud grunt. By now Kevin and I are laughing so hard, still trying to be quiet and not really succeeding (bless Todd, he slept through the whole thing). At this point there is really no way to move Kyle without a huge fuss. While we are still laughing and Kevin is trying to decide what to do Kyle says very clearly....It's NOT funny!
Since the boys have been older (ie we are able to reason with them) we have been allowing more sleeping in our bed. Mostly it started with Friday night movie in our bed. We generally use Friday night as our "fun night out" with the boys. We go to dinner (their choice...groan...pizza again...no wonder I can't lose weight) and then either buy a movie (if it is like say $5 or less) or rent a movie. The kiddos then get to watch said movie, staying up way too late but hey, it is Friday after all. Kevin and I have seen lots and lots of kids movies...many, many times...so we tell them they can watch their movie in our room because there are only 2 dvd players. One in the main room with big tv and one in our room. Needless to say this practice has recently developed into the boys wanting to sleep in our bed all night. I think Kevin just gives in, not sure, but somehow the boys end up in bed with me all night.
So, the kiddos slept with me Friday night. Well Saturday night came around and the boys wanted to sleep with me again. Kevin was like....uh, no. But giving in we let them watch a movie and then fall asleep in the bed with the intention of moving them to their own bed later. I am the first in bed, Kyle just went to sleep but considering it was somewhat late for him I thought he was really asleep. Apparently not. Kevin comes in a little after me and goes to get Kyle and move him. Everything is all quiet and dark...the only sound is the kiddos slow, even, deep breathing. Kevin leans over and right as he is about to touch Kyle...Kyle says very loudly and very clearly...Don't MOVE Me. Kevin, somewhat startled, starts to laugh. As quietly as possible. I start to laugh. Kyle, hoping to impress on both of us that we can all sleep in the same bed then says in his sleep mumble...again, don't me move, I move over, and then proceeds to toss Todd half way across the bed to make room for Kevin. All poor Todd did was get up close next to his brother on Kevin's side of the bed. All I can see is Kyle pushing Todd and Todd violently rolling over with a very loud grunt. By now Kevin and I are laughing so hard, still trying to be quiet and not really succeeding (bless Todd, he slept through the whole thing). At this point there is really no way to move Kyle without a huge fuss. While we are still laughing and Kevin is trying to decide what to do Kyle says very clearly....It's NOT funny!
Monday, February 2, 2009
Who else can say they have a potato chip floor
Last night we had some friends and family over to watch the Superbowl. None of us really cared about the teams playing but hey...it is the Superbowl, the last real football game of the entire season and a good reason to have a get together. Needless to say the kiddos did not get as much supervision as usual. My kiddos (of course!) along with one of their friends, a boy who is 1 month older than T (so that makes the three culprits one 5yo and two 3 1/2yos) decided at some point that they needed to eat some chips. The bags had been left on the kitchen counter...well within their reach. Okay. Not that big a deal they are eating chips at 9:30pm. Except of course to keep this interesting they had to take not one but two almost full bags of chips and throw them all over the floor in their playroom. I still have no idea why. The best part is that K comes over to me in the kitchen and tells me very seriously...T and B are throwing chips all over the playroom. When I go to check it out...T very seriously throws his big brother under the bus (in response to K telling me in the first place I'm sure) by informing me that K was in on the action as well. Lovely.
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