Today was a rough day for us. We found out that our youngest son is indeed mentally and physically handicapped. He is a 5 month old baby and today we found out that he behaves like a 6 week old. No head or trunk support lasting more than 5 seconds, the inability to track well, trouble stretching out his legs, the inability to roll over, he won't reach out and grab his toys, grasp items for longer than 2 seconds.....on and on it went. Over the last several months I personally have been trying to get him to do these little things by tummy time and supporting him when he is sitting on my lap or even trying to show him how to roll over....I personally feel like I failed in avoiding the inevitable.
I have a bad habit of doing that, trying to do the best I can to pretend it really isn't there and acting like everything is normal...this is a bad habit (slaps hands) seriously, if I don't confront it maybe it will go away. NOW don't start judging me and calling me a bad mom (finger wag in your face). I don't do that with my kids. I honestly thought that my baby was going to be a little behind but not A LOT behind. I have been working with him on stretching and moving his arms and flexing but it wasn't enough and today I found out that I wasn't even close to achieving enough with him. I take him to his appointments (there is one almost every 10 days it seems) I change his diapers, feed him boob juice (did she just say BOOB!!!) , cuddle him when he needs it and work with him on the ground at getting strong but somehow it doesn't seem to be enough. We really have no idea if therapy OT or PT is really going to make a difference but I'm going to give it a shot and work really hard at it with him. The sad part???? This is really the beginning of it all. He is going to need "special" attention for the rest of his life.....so why the post??? I didn't know it was this bad.
We have been told by our audiologist that he can't hear low tones.....WHAT does that mean??? what exactly can he not hear??? NO ONE CAN TELL ME!! Today I found out that he can't hear the rustle of paper, the rattles that babies have, the crinkling of a sack, whispers can't be heard......OHHH!!! So now it begins to sink in.
It's like thinking everything is ok until you actually start talking about it with other people and putting it in words, that's when you start to realize that maybe you are crazy and insane and bonkers.
The hardest part was telling my husband the "bad" news. When he was born I was told that he will be somewhat slower than other kids, our pediatrician said that he will be behind but we just have to work hard with him and he will graduate from high school, our neurologist thinks that would be a miracle. I had to tell my husband that our new baby is not normal and never will be. Granted we knew this was a possibility but he has a bad habit of thinking the good things in life when it comes to his kids. He thinks that the Dr's are exaggerating and that he will come out on top. Every time I have to give him a bad update about his kid I feel like I just shattered his world. He will process it over time and come to accept it but giving the news is the hardest part. When you see your husband crumple under the news it really makes me feel like the bad new bears and I want to take it all away.
I am frustrated at the situation, he's is the happiest baby, he is a blessing, but thinking you are doing everything but you need to do more is the most frustrating part.
Monday, July 28, 2014
Friday, July 25, 2014
CMV
And this begins the story of my second....he has been an adventure!
My second son is a blessing to our family. We tried for months to get pregnant and when we finally found out we were we were moving two months later. I went in for our confirmation appointment with our OB and I kept telling him that I thought something was wrong. He asked me why I thought that and I explained that I am more exhausted and nauseous than I was with my first and that I have no energy. He said that I am fine and that each pregnancy is going to be different.
We moved when I was three months pregnant and I started looking for a new OB. At our 20 week ultrasound (what they now call anatomy ultrasound) the technician couldn't tell us anything much less if he was a boy or a girl. She acted very odd, almost like she was panicking. We did the ultrasound vaginally and on the belly which was really weird to me. We left the room a little confused and we didn't know our babies gender. After a little while of waiting our OB came in and explained that the amniotic fluid was really low and that it looked like his brain was underdeveloped, he started to talk about downs syndrome and genetic disorders and being tested for them. I looked at him and said that there is not history in my family of any problems genetically but agreed to do the blood work. We were referred for an emergency appointment to see a maternal Fetal specialist.
The specialist that saw us did again another in depth ultrasound (it took 45 minutes to scan that kid) and we found out that we were having another boy (yay, we were hoping for a girl, I'm happy with a boy). The Dr. came in and explained what exactly was wrong....He had low amniotic fluid, Bright bowels (we later learned meant blockage) underdeveloped brain and he was way to small for his age (he was measuring an entire month under his gestational age. We were told that he had no idea what was causing the problem (the blood work did not indicate any genetic issues) and that he needed to draw more blood and test for more uncommon genetic disorders and for Cytomegalovirus (CMV)
All our blood work was negative except the CMV tested positive, I had contracted the virus as some point during our pregnancy but never showed any symptoms or problems from it. The Dr. said that the only way to find out if the baby is infected is to do an amniocentesis and test the amniotic fluid., at this point we had seen him twice since our first visit and the babies heart started to get enlarged. We did the amnio and found that the fluid was infected so the chances of the baby being infected are very high thus showing what was causing all these problems with our baby. He said we don't know the extent of the infection because we can't test the placenta. We didnt have a lot of options because treatment for this infection is still in trials. We didn't qualify for any trials because we were too far along and this kind of infection actually infecting the baby isn't very common. The Dr. discussed with a colleague and he decided to do a treatment of Cytogam in the hospital. It is commonly used on people getting organ transplants but has come to show some effect on the CMV. We were in the hospital for 10 hours the first time for a 4 hour IV treatment, I got a cold but my belly exploded and I finally started to look pregnant. We did two treatment of Cytogam, one at 24
weeks and again at 28 weeks. Our baby started to improve, his growth progressed to being only 2 weeks behind gestation, his bowels became normal, and the fluid expanded. He still showed issues with his brain and he had developed a Cyst on his cerebellum. I went on acyclovir for the remainder of the pregnancy and gave birth on March 2. He was born 6lbs 11oz and 18.5 inches long. He is a strong little boy.
We did ultrasounds and MRI on that jelly bean and we found that the he will be mentally and physically handicapped for the rest of his life.The cyst on his cerebellum could effect his ability to walk, sit or even crawl but we will never know until he actually starts hitting his milestones. Even at 4 months he is the happiest baby and he just goes with the flow. He takes a little longer the learn how to do things that other kids will do super easily. We have 4 different specialists following him (i think out of curiosity instead of necessity) and we have had a scare with seizures. The hardest part is when people compare their child to mine, he is not going to do amazing outstanding things like your child, he won't start crawling right away. It breaks my heart some days and sometimes I feel so alone and the only strong person in my family.I feel like I have no one who truly understands what I am going through with my baby and some days I just want to pretend like nothing is wrong. I have been through hell with this pregnancy and I am trying to be so strong. CMV is not regularly tested for and if it is it can be prevented from early on. Why not test just a little extra to prevent something like this. I love my baby no matter what and I know that we are going to be the best parents for him which is why he was sent our way. He is so cuddly and perfect for our family and his smile and eyes could light the world.........
He is the perfect addition to our family to add to our farts and giggles.
My second son is a blessing to our family. We tried for months to get pregnant and when we finally found out we were we were moving two months later. I went in for our confirmation appointment with our OB and I kept telling him that I thought something was wrong. He asked me why I thought that and I explained that I am more exhausted and nauseous than I was with my first and that I have no energy. He said that I am fine and that each pregnancy is going to be different.
We moved when I was three months pregnant and I started looking for a new OB. At our 20 week ultrasound (what they now call anatomy ultrasound) the technician couldn't tell us anything much less if he was a boy or a girl. She acted very odd, almost like she was panicking. We did the ultrasound vaginally and on the belly which was really weird to me. We left the room a little confused and we didn't know our babies gender. After a little while of waiting our OB came in and explained that the amniotic fluid was really low and that it looked like his brain was underdeveloped, he started to talk about downs syndrome and genetic disorders and being tested for them. I looked at him and said that there is not history in my family of any problems genetically but agreed to do the blood work. We were referred for an emergency appointment to see a maternal Fetal specialist.
The specialist that saw us did again another in depth ultrasound (it took 45 minutes to scan that kid) and we found out that we were having another boy (yay, we were hoping for a girl, I'm happy with a boy). The Dr. came in and explained what exactly was wrong....He had low amniotic fluid, Bright bowels (we later learned meant blockage) underdeveloped brain and he was way to small for his age (he was measuring an entire month under his gestational age. We were told that he had no idea what was causing the problem (the blood work did not indicate any genetic issues) and that he needed to draw more blood and test for more uncommon genetic disorders and for Cytomegalovirus (CMV)
All our blood work was negative except the CMV tested positive, I had contracted the virus as some point during our pregnancy but never showed any symptoms or problems from it. The Dr. said that the only way to find out if the baby is infected is to do an amniocentesis and test the amniotic fluid., at this point we had seen him twice since our first visit and the babies heart started to get enlarged. We did the amnio and found that the fluid was infected so the chances of the baby being infected are very high thus showing what was causing all these problems with our baby. He said we don't know the extent of the infection because we can't test the placenta. We didnt have a lot of options because treatment for this infection is still in trials. We didn't qualify for any trials because we were too far along and this kind of infection actually infecting the baby isn't very common. The Dr. discussed with a colleague and he decided to do a treatment of Cytogam in the hospital. It is commonly used on people getting organ transplants but has come to show some effect on the CMV. We were in the hospital for 10 hours the first time for a 4 hour IV treatment, I got a cold but my belly exploded and I finally started to look pregnant. We did two treatment of Cytogam, one at 24
weeks and again at 28 weeks. Our baby started to improve, his growth progressed to being only 2 weeks behind gestation, his bowels became normal, and the fluid expanded. He still showed issues with his brain and he had developed a Cyst on his cerebellum. I went on acyclovir for the remainder of the pregnancy and gave birth on March 2. He was born 6lbs 11oz and 18.5 inches long. He is a strong little boy.
We did ultrasounds and MRI on that jelly bean and we found that the he will be mentally and physically handicapped for the rest of his life.The cyst on his cerebellum could effect his ability to walk, sit or even crawl but we will never know until he actually starts hitting his milestones. Even at 4 months he is the happiest baby and he just goes with the flow. He takes a little longer the learn how to do things that other kids will do super easily. We have 4 different specialists following him (i think out of curiosity instead of necessity) and we have had a scare with seizures. The hardest part is when people compare their child to mine, he is not going to do amazing outstanding things like your child, he won't start crawling right away. It breaks my heart some days and sometimes I feel so alone and the only strong person in my family.I feel like I have no one who truly understands what I am going through with my baby and some days I just want to pretend like nothing is wrong. I have been through hell with this pregnancy and I am trying to be so strong. CMV is not regularly tested for and if it is it can be prevented from early on. Why not test just a little extra to prevent something like this. I love my baby no matter what and I know that we are going to be the best parents for him which is why he was sent our way. He is so cuddly and perfect for our family and his smile and eyes could light the world.........
He is the perfect addition to our family to add to our farts and giggles.
Tuesday, July 15, 2014
Firstborn
I have two boys as you now know. It's been a major eye opener and it has really helped me to be a down to earth mom in some ways. I grew up with three brothers so having a girl completely terrifies me and makes me want to gag....all I see is a lot of pink, hair bows everywhere and hormonal rages in my future daughter....not my cup of tea at the moment.
I have an almost 3 year old on my hands. He is completely potty trained, talking up a storm (seriously never shuts up) and loves to mimic every word and action that we do. This kid has managed to say "shit" in the correct form (i.e. "oh shit") and his truck word sounds a lot like the "f" word. He is our foot ball playing getting rough and rowdy kid. He is scared of nothing except the Vacuum Cleaner (which i have yet to figure out and yes I chase him around the house with it because it is hilarious how he screams like a girl)
My first pregnancy was rather interesting. I had a lot of blood pressure issues throughout that caused me to swell so badly that no pair of paints fit right, my wedding rings came of early in the pregnancy, and I have stretch marks from the swelling in places no one should have them (seriously no one warns you about stretch marks on your ass or boobs) Our first ultrasound he was quite proud to show his gender (frog leg position) and to this day he loves to show off his wee wee.
My husband and I didn't exactly plan our pregnancy, we didn't say no kids but we also didn't say "let's have a kid'' it just happened (pssht yeah right) Work was rather crazy for me so my period was missed for an entire week before I got the hint. I took three tests in the bathroom one night and boy did those suckers light up like a Christmas Tree (I wonder if it would be more effective if they yelled "your pregnant" because no one ever believes the first test right?) I didn't tell my husband until the next day and when I did he didn't say anything for 5 minutes. I had started to cry and told him to say something because he is freaking me out. He grabbed his phone to check his calendar and to ask me when my confirmation appointment is. So yeah I was pregnant.
He did not come on his due date...in fact he came two weeks later. I had what the Dr. called an unfavorable cervix. (still sounds insulting to this day) I was put on bed rest because of my blood pressure and by the time I was about to hit week two past our due date I got up the night before and boogied my ass off in the living room for 30 minutes while dinner cooked. Labor started the next morning around 3 a.m.
I went in to wake my husband at our usual time at 6:30a and told him I thought I was in labor and that he could go to work or stay home with me. He looks at me with big brown eyes and says he'll go to work. (of course) I sit at home having pretty regular contractions until he gets home around 1 and I can't stand it anymore and we head to my OB office. At this point my contractions are every five minutes and I haven't peed all day. The OB checks my urine and my cervix. I had calcium deposits and I was 1 cm dilated (whoop whoop) she admitted me because of my blood pressure. They broke my waters and gave me Pitocin to assist in the labor. I had an epidural that had to have three boosts and I went through 4 bags. By the time I felt I needed to push we had been in the hospital for 16 hours. I pushed for 2 hours and still this kid would not come out. I rested for an hour in different positions to try and get him to come lower on my cervix himself and started pushing again. Having pushed for that long the OB on call came in and wanted this to be over with (they were very busy and needed the room and he wanted to eat lunch because it was 12:00pm) I wasn't making any progress and so he assisted with the vacuum pump. It slipped of his head because of all the hair three times (the nurse was braiding his hair while I was trying to push) finally he came out!! The Dr. just stared at him for a few minutes in shock than told the nurse to take care of him. He weighed in at 10 pound 4 oz and 22 inches long....born vaginally....I tore up and down (ewww gross) and couldn't walk or stand up straight for a couple of days. I had lost so much blood and my count was so low that people were shocked that I was moving around and talking but they all looked at me terrified because I was ghostly white. We donated the cord blood and it took 4-5 big syringes worth.
Because he was so big and I was laboring so long with him he came out with breathing trouble and had to be under an oxygen tent for 3 days. They would not feed him until his breathing calmed and I could not hold him to calm him down because they wanted him under the tent. It was the most frustrating situation I had ever been in as a new mom. One of the pediatricians on call finally made a decision to feed him because she said he was just mad and hungry and we can't starve a big baby like that, he fed and finally came off the oxygen because he had calmed down enough to breath. Finally I was able to go in and hold and feed him and eventually we took him home after being in the hospital a whole week for antibiotic treatments. It was one of the most scariest experiences in my life but I look back on this miracle as an experience well worth it. That pediatrician became our regular pediatrician and I really miss her, she was one of the best.
He has grown to be a super strong and amazing child. A true blessing and a true boy. I love my boy to the ends of the earth and I am so glad that we can fart and giggle together.
I have an almost 3 year old on my hands. He is completely potty trained, talking up a storm (seriously never shuts up) and loves to mimic every word and action that we do. This kid has managed to say "shit" in the correct form (i.e. "oh shit") and his truck word sounds a lot like the "f" word. He is our foot ball playing getting rough and rowdy kid. He is scared of nothing except the Vacuum Cleaner (which i have yet to figure out and yes I chase him around the house with it because it is hilarious how he screams like a girl)
My first pregnancy was rather interesting. I had a lot of blood pressure issues throughout that caused me to swell so badly that no pair of paints fit right, my wedding rings came of early in the pregnancy, and I have stretch marks from the swelling in places no one should have them (seriously no one warns you about stretch marks on your ass or boobs) Our first ultrasound he was quite proud to show his gender (frog leg position) and to this day he loves to show off his wee wee.
My husband and I didn't exactly plan our pregnancy, we didn't say no kids but we also didn't say "let's have a kid'' it just happened (pssht yeah right) Work was rather crazy for me so my period was missed for an entire week before I got the hint. I took three tests in the bathroom one night and boy did those suckers light up like a Christmas Tree (I wonder if it would be more effective if they yelled "your pregnant" because no one ever believes the first test right?) I didn't tell my husband until the next day and when I did he didn't say anything for 5 minutes. I had started to cry and told him to say something because he is freaking me out. He grabbed his phone to check his calendar and to ask me when my confirmation appointment is. So yeah I was pregnant.
He did not come on his due date...in fact he came two weeks later. I had what the Dr. called an unfavorable cervix. (still sounds insulting to this day) I was put on bed rest because of my blood pressure and by the time I was about to hit week two past our due date I got up the night before and boogied my ass off in the living room for 30 minutes while dinner cooked. Labor started the next morning around 3 a.m.
I went in to wake my husband at our usual time at 6:30a and told him I thought I was in labor and that he could go to work or stay home with me. He looks at me with big brown eyes and says he'll go to work. (of course) I sit at home having pretty regular contractions until he gets home around 1 and I can't stand it anymore and we head to my OB office. At this point my contractions are every five minutes and I haven't peed all day. The OB checks my urine and my cervix. I had calcium deposits and I was 1 cm dilated (whoop whoop) she admitted me because of my blood pressure. They broke my waters and gave me Pitocin to assist in the labor. I had an epidural that had to have three boosts and I went through 4 bags. By the time I felt I needed to push we had been in the hospital for 16 hours. I pushed for 2 hours and still this kid would not come out. I rested for an hour in different positions to try and get him to come lower on my cervix himself and started pushing again. Having pushed for that long the OB on call came in and wanted this to be over with (they were very busy and needed the room and he wanted to eat lunch because it was 12:00pm) I wasn't making any progress and so he assisted with the vacuum pump. It slipped of his head because of all the hair three times (the nurse was braiding his hair while I was trying to push) finally he came out!! The Dr. just stared at him for a few minutes in shock than told the nurse to take care of him. He weighed in at 10 pound 4 oz and 22 inches long....born vaginally....I tore up and down (ewww gross) and couldn't walk or stand up straight for a couple of days. I had lost so much blood and my count was so low that people were shocked that I was moving around and talking but they all looked at me terrified because I was ghostly white. We donated the cord blood and it took 4-5 big syringes worth.
Because he was so big and I was laboring so long with him he came out with breathing trouble and had to be under an oxygen tent for 3 days. They would not feed him until his breathing calmed and I could not hold him to calm him down because they wanted him under the tent. It was the most frustrating situation I had ever been in as a new mom. One of the pediatricians on call finally made a decision to feed him because she said he was just mad and hungry and we can't starve a big baby like that, he fed and finally came off the oxygen because he had calmed down enough to breath. Finally I was able to go in and hold and feed him and eventually we took him home after being in the hospital a whole week for antibiotic treatments. It was one of the most scariest experiences in my life but I look back on this miracle as an experience well worth it. That pediatrician became our regular pediatrician and I really miss her, she was one of the best.
He has grown to be a super strong and amazing child. A true blessing and a true boy. I love my boy to the ends of the earth and I am so glad that we can fart and giggle together.
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