This is my #1 Pet Peeve....
Don't compare my children to ANYBODY. Each child is unique and deserves to be able to grow. No child grows at a steady rate....there are leaps and bounds and plateaus along the way. When we had Elizabeth I constantly heard from various people that we were feeding her too much (she was OFF the growth chart....but proportionally off meaning her head was over the 90th percentile, as was her weight, and height. She didn't have any abnormal features. I fed her when she was hungry (granted she got regular breakfast, lunch and dinner). She has always been a tall girl. By the time she was walking around she completely sprouted up and in. She is a bean sprout....a very tall bean sprout. At soccer two summers ago a woman sitting on the bench next to me commented on her defined quads and calf muscles in her legs....yes....they are defined....and muscular. She wanted to know what I was "doing with her"...as though I had her on some specific diet and on a training regimen. She was FOUR. I had her going to a combination ballet/tap class on Saturdays....that was IT. Where do people get these ideas from?!
Alison was born and she was actually smaller than Elizabeth by 10oz at birth. She also grew quickly. A nurse actually asked what I was feeding her. Ummmmm.....breastmilk. I think she thought I was slipping her baby growth hormones. Alison was also off the charts. The comments never stopped about her weight though. I swear she was going to develop an eating disorder by the age of 6 months just from people's comments. She is HUGE...blah blah blah. My mother THANK GOD reminded people that my oldest brother was also the largest as a baby and is now able to eat anything and is super thin (not anorexic....but healthy). Thank you MOM! Alison has come into her own. She is not string bean thin, but she is not overweight by any means either. She is just a different build from her sister and has more curves (guess whose pants stay on better?). She is definitely a power house though....and VERY athletic. I begged the YMCA to put her in the older class because her gross motor skills were able to handle it and she was able to appropriately pay attention like the older kids because she had been in daycare since she was 8 weeks old. She did phenomenally well. She is currently in a dance class for older girls too...but is still doing well. She has natural talents.
Josie Posie...the biggest at birth at 8lbs 9oz (pure McDonald Happy Meals and Mac N' Cheese). Granted it was good she was so big, because thanks to being so severely jaundiced....those extra pounds melted away quickly. Due to the Down Syndrome she has shortened long bones. Now...my father also has short legs (no offense Dad....but I'm not sure it is just the Down Syndrome...or the luck of the draw of the gene pool on this one). I am also just a simple 5'3"....so no lanky model legs here either. Josie is doing VERY well according to her therapist (and her family). She is sitting up, and rolls to get around. She does sit like Houdini. Nobody quite sees how she does it, but when you look away, she pops up. She isn't walking yet, or cruising. Now here is where her lower tone does come into play. It is not that she isn't muscular. That is not what low tone is. Low tone means that it takes much more mental energy for your brain to tell your muscles what to do, and for your muscles to actually DO it. She is actually VERY strong. But her muscles don't cooperate all of the time. She did surprise me today....her first birthday. She stood up a bit with me holding on to her under her arms and didn't lean into me as much! Such a proud moment! She also has a hard time communicating. She hasn't passed a hearing test yet. We are working on teaching her sign language. I do luck out in that category as I was pretty good at sign when I was a kid thanks to having a good friend growing up who had spina bifida and couldn't speak. It hasn't been that hard to pick back up. Josie tries to please...you can see it in her eyes. What drives me batty is when other people with typical children try to measure her up to their child (or grandchild). I don't believe in doing that between typical children, let alone those with unique needs. If I have to hear, "Well So and So is doing this already....isn't Josie doing that?!".....I might puke (you may want to ask the Illiterate Dr. from the peds ward in my previous post to borrow her Crocs as I may purposely aim at your shoes). I understand worried parents asking another parent when their child ALREADY accomplished something. I did this the other day. I asked a good friend of mine who has a daughter with Down Syndrome as well when her daughter started crawling, cruising, then walking. I was trying to gauge for myself whether we were on a pretty good track, or whether she needed more Physical Therapy.
I remember asking my friends who were Speech Language Pathologists about Elizabeth and Alison's speech. Elizabeth was a late talker and so was Alison. They both spoke (beyond Mama, Dada...) at 16/17 months. I was concerned they may need speech therapy. All of my friends put my mind at ease telling me that it was still "OK". When they did talk....my God....it was in full sentences. All that time and they were just soaking it all in. Alison had a severe stutter for a good 6 months. I mean SEVERE. Again, my good friends happily explained that when the brain has a language explosion and the oral motor muscles can't keep up....a temporary stutter can appear. Again...this was what happened and I have my friends to thank for putting my mind at ease. Alison also doesn't pronounce her /R/s. I'm not sure that is a huge issue. Her teacher when she was 2 was from England (she came home telling me that she "fell on me bum"), and her teacher from her 3s preschool had a thick Boston accent. I am pretty sure that based on where we live, her speech would be considered the "dialect", and not really an impediment!
Here is the difference. I am asking my friends because I AM THE ONE CONCERNED about MY OWN CHILD. I am not trying to compare my children to their children in that mine are "one upping" anybody! Stop trying to tell me that "So and So is doing this.....isn't [insert name here]?" I will not have my children growing up with a feeling of eternal inferiority. Everybody has their strengths and weaknesses....EVERYBODY. Cherish what your strengths are and help others when they are down or struggling. Is that so hard to do?
*At one of our last pediatrician appointments I was told that Elizabeth and Alison were "nicely re-approaching the growth chart"....where were they before? Mars? I looked at the chart and there were a ton of colored dots floating above the chart. I just chuckled. Sometimes it is OK to be "off the grid"!
Tuesday, November 20, 2012
Medical "Professionals" That may be Illiterate...
Now....the title of this entry may seem a little harsh....but let me explain.
A week after we brought Josie home from the hospital, she wasn't doing well. She was becoming very lethargic and was hard to wake. Therefore, she wasn't eating well....because every time she tried to eat....she fell asleep. Literally. I would strip her down and it made no difference. Also, when she was discharged from the hospital she had "slight jaundice". I had been putting her in front of the window with her shirt open to expose her skin to the sunlight as much as possible (sunlight breaks down the bilirubin that causes jaundice). She was literally turning into a tangerine before our eyes.
I called the pediatrician's office and they agreed to see her that evening. I took her down and the pediatrician guessed her levels were around a 12 by looking at her. 20 is dangerous in regards to potential brain damage. I needed to take her to the lab to have her levels drawn.
Josie and I hopped back into the car, and off we went to search out a lab that was still open at night. We found one across the street from one of the hospitals. I went in, only to be told that there wasn't anybody there that was able to draw from an infant that young. I kindly explained that it was urgent. A few phone calls were made and an hour later a very nice phlebotomist came from the hospital to help out. Blood drawn....SUCCESS. We headed home.
I got a call from the pediatrician's office.....her bilirubin levels were dangerously high and she needed to go to the emergency room immediately to be admitted. Off we went. The Pediatric ER Doctors are WONDERFUL. After using a fun infrared light under her hand....three attempts (my poor pin cushion), and an IV line was started. She was admitted to the pediatric ward of the hospital for light therapy in a "Bilibed". I was not allowed to take her out, unless I wrapped her in the "biliblanket". The first night was not bad. I slept on the pediatric bed next to her little bassinet. There was NO way my baby was going to be alone. Throughout the night, nurses came in and out to take vitals. Just a note....the night staff is pretty cranky in comparison to the day staff. There was one really nice woman who we liked though! Kevin was kind enough to bring me a change of clothes and a toothbrush to help me through. I also lived on Turkey sandwiches from the cafeteria.
Here is where I get a bit annoyed. So the staff that draw her blood come in and tell me that they need to check her levels. I totally get that and they work away and off they go. Now....a reminder is that she has a blood disorder (polycythemia) which makes drawing her blood particularly difficult. They return in a bit and tell me that they need to do it again, because the Dr. said that the lab made a mistake. Again....they prick and prick and squeeeeeze my angel's foot until it looks mangled. Off they go.
In the meantime, the Dr. comes in (picture a woman who doesn't take care of herself, hasn't showered, or combed her hair, and is wearing a pair of crocs....not because they are puke proof, but because I think she is too lazy to wear anything else that requires ties or buckles). She starts going on and on about how Josie is lethargic and isn't eating and how they need to determine if it is due to her having Down Syndrome and "Low Tone", or because of the Jaundice. I kindly explain that I know that many children with Down Syndrome have "Low Tone" but her's was actually in the normal range (low average....but still average). Also, she was nursing fine in the other hospital where she was born, and I didn't think it was all of a sudden a skill she had lost. The lactation consultant came in to check her out and also agreed that it was NOT the Down Syndrome, but was in fact the Jaundice that was causing the problems.
BEWARE- if you have a medical condition and a medical provider looks at you for the first time, you may have to remind them to take off the "tinted lens" they are looking through. Not everything is going to be associated with "Down Syndrome".
Back come the lab staff....again they claim they need to re-draw her blood because of another lab error. This time, I am getting a bit Mama Bearish. I ask specifically why the Dr. believes there is an error. They tell me that the tests are showing that Josie has too many red blood cells and platelets. UMMMMMM.....YES....I KNOW.....SHE HAS POLYCYTHEMIA WHICH IS RIGHT IN HER CHART. DID THE PEDIATRICIAN READ HER CHART.....EVER?!?! Now I am LIVID. I have been cooped up for 4 days and I am about to lunge at this woman's throat the next time I see her. The lab technician and staff are also very frustrated (not with me....but their eye rolls at one another clearly state that this isn't the first time they have had to deal with this woman's ineptness). The staff refuse to carry out the order until the pediatrician comes and speaks directly to me. In comes Dr. Disheveled. "Ohhhhhh....I was wondering if you Kneeeewwwww she had polycytheeeemiiiiiaaaaa". UM YES.....I HAD IT ADDED TO HER CHART WHEN SHE WAS ADMITTED. Thirteen holes in my baby girls feet because this woman couldn't read a chart. SO WRONG.
In walks the nurse from the NICU. The NICU staff were caring for her even though she was in the Ped ward because she had already been home for a week, and there was no room in the NICU. The nurse starts rambling on about "Failure to Thrive" etc. and hands me some paperwork about Down Syndrome that explains all of the things that "COULD" be wrong with her and goes on to explain how we will need to teach her to control her "Sexual impulses" and that she will have "Anger Issues". Ummmmm.....I have worked with children with Down Syndrome for a while....and from what I understood, children with Down Syndrome have a range of emotions just like every other child. They are not "Always Happy", nor are they "Raging" 100% of the time. Also, you teach ALL children socially appropriate behavior. AND.....OMG....she is a WEEK old....is this even appropriate? I checked out the copywrite date and it was nearly 20 years old. Do you have any idea how much has changed in research and outcomes in 20 years!?! I couldn't believe the garbage I was handed. Not to mention the lack of understanding the staff even had. She did not have "Failure to Thrive"....she had "JAUNDICE". Our medical community needs to do a much better job at keeping their staff up to date on these things. When I get the chance, I plan on having a nice conversation with the head of the Pediatric Ward of that Hospital. I have a few suggestions and resources for them.
Bottom line....when a medical professional walks in....ask first, "Did you look at her chart?"
A week after we brought Josie home from the hospital, she wasn't doing well. She was becoming very lethargic and was hard to wake. Therefore, she wasn't eating well....because every time she tried to eat....she fell asleep. Literally. I would strip her down and it made no difference. Also, when she was discharged from the hospital she had "slight jaundice". I had been putting her in front of the window with her shirt open to expose her skin to the sunlight as much as possible (sunlight breaks down the bilirubin that causes jaundice). She was literally turning into a tangerine before our eyes.
I called the pediatrician's office and they agreed to see her that evening. I took her down and the pediatrician guessed her levels were around a 12 by looking at her. 20 is dangerous in regards to potential brain damage. I needed to take her to the lab to have her levels drawn.
Josie and I hopped back into the car, and off we went to search out a lab that was still open at night. We found one across the street from one of the hospitals. I went in, only to be told that there wasn't anybody there that was able to draw from an infant that young. I kindly explained that it was urgent. A few phone calls were made and an hour later a very nice phlebotomist came from the hospital to help out. Blood drawn....SUCCESS. We headed home.
I got a call from the pediatrician's office.....her bilirubin levels were dangerously high and she needed to go to the emergency room immediately to be admitted. Off we went. The Pediatric ER Doctors are WONDERFUL. After using a fun infrared light under her hand....three attempts (my poor pin cushion), and an IV line was started. She was admitted to the pediatric ward of the hospital for light therapy in a "Bilibed". I was not allowed to take her out, unless I wrapped her in the "biliblanket". The first night was not bad. I slept on the pediatric bed next to her little bassinet. There was NO way my baby was going to be alone. Throughout the night, nurses came in and out to take vitals. Just a note....the night staff is pretty cranky in comparison to the day staff. There was one really nice woman who we liked though! Kevin was kind enough to bring me a change of clothes and a toothbrush to help me through. I also lived on Turkey sandwiches from the cafeteria.
Here is where I get a bit annoyed. So the staff that draw her blood come in and tell me that they need to check her levels. I totally get that and they work away and off they go. Now....a reminder is that she has a blood disorder (polycythemia) which makes drawing her blood particularly difficult. They return in a bit and tell me that they need to do it again, because the Dr. said that the lab made a mistake. Again....they prick and prick and squeeeeeze my angel's foot until it looks mangled. Off they go.
In the meantime, the Dr. comes in (picture a woman who doesn't take care of herself, hasn't showered, or combed her hair, and is wearing a pair of crocs....not because they are puke proof, but because I think she is too lazy to wear anything else that requires ties or buckles). She starts going on and on about how Josie is lethargic and isn't eating and how they need to determine if it is due to her having Down Syndrome and "Low Tone", or because of the Jaundice. I kindly explain that I know that many children with Down Syndrome have "Low Tone" but her's was actually in the normal range (low average....but still average). Also, she was nursing fine in the other hospital where she was born, and I didn't think it was all of a sudden a skill she had lost. The lactation consultant came in to check her out and also agreed that it was NOT the Down Syndrome, but was in fact the Jaundice that was causing the problems.
BEWARE- if you have a medical condition and a medical provider looks at you for the first time, you may have to remind them to take off the "tinted lens" they are looking through. Not everything is going to be associated with "Down Syndrome".
Back come the lab staff....again they claim they need to re-draw her blood because of another lab error. This time, I am getting a bit Mama Bearish. I ask specifically why the Dr. believes there is an error. They tell me that the tests are showing that Josie has too many red blood cells and platelets. UMMMMMM.....YES....I KNOW.....SHE HAS POLYCYTHEMIA WHICH IS RIGHT IN HER CHART. DID THE PEDIATRICIAN READ HER CHART.....EVER?!?! Now I am LIVID. I have been cooped up for 4 days and I am about to lunge at this woman's throat the next time I see her. The lab technician and staff are also very frustrated (not with me....but their eye rolls at one another clearly state that this isn't the first time they have had to deal with this woman's ineptness). The staff refuse to carry out the order until the pediatrician comes and speaks directly to me. In comes Dr. Disheveled. "Ohhhhhh....I was wondering if you Kneeeewwwww she had polycytheeeemiiiiiaaaaa". UM YES.....I HAD IT ADDED TO HER CHART WHEN SHE WAS ADMITTED. Thirteen holes in my baby girls feet because this woman couldn't read a chart. SO WRONG.
In walks the nurse from the NICU. The NICU staff were caring for her even though she was in the Ped ward because she had already been home for a week, and there was no room in the NICU. The nurse starts rambling on about "Failure to Thrive" etc. and hands me some paperwork about Down Syndrome that explains all of the things that "COULD" be wrong with her and goes on to explain how we will need to teach her to control her "Sexual impulses" and that she will have "Anger Issues". Ummmmm.....I have worked with children with Down Syndrome for a while....and from what I understood, children with Down Syndrome have a range of emotions just like every other child. They are not "Always Happy", nor are they "Raging" 100% of the time. Also, you teach ALL children socially appropriate behavior. AND.....OMG....she is a WEEK old....is this even appropriate? I checked out the copywrite date and it was nearly 20 years old. Do you have any idea how much has changed in research and outcomes in 20 years!?! I couldn't believe the garbage I was handed. Not to mention the lack of understanding the staff even had. She did not have "Failure to Thrive"....she had "JAUNDICE". Our medical community needs to do a much better job at keeping their staff up to date on these things. When I get the chance, I plan on having a nice conversation with the head of the Pediatric Ward of that Hospital. I have a few suggestions and resources for them.
Bottom line....when a medical professional walks in....ask first, "Did you look at her chart?"
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| My Little Tangerine! |
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| Josie Posie! |
Why "Up Over the Rainbow"?
So for those of you wondering why I titled my page something that sounds like a spoof on either a Wizard of Oz movie, or the popular version of the song "Some Where Over the Rainbow" sung by the Hawaiian guy Israel Kamakawiwo'ole, let me explain the meaning of the title....
For those of you who have lived this journey, you will recognize the term "Rainbow Babies". The best definition I have found was provided by "Starwarsmama" on Babycenter.com...
Short: A rainbow baby is a (miracle) baby conceived after the loss of another child.
"Rainbow Babies" are the understanding that the beauty of a rainbow does not negate the ravages of the storm. When a rainbow appears, it does not mean that the storm never happened or that the family is not still dealing with its aftermath. What it means is that something beautiful and full of light has appeared in the midst of the darkness and the clouds. Storm clouds may still loom over but the rainbow provides a counterbalance of color, energy, and much needed hope.
When looking at our history, you can see how each of our children is a true Rainbow baby.
No....this does not mean that we spoil our children rotten and teach them that they are the "exception". We are just very cognizant of the true miracle of life because of them.
For those of you who have lived this journey, you will recognize the term "Rainbow Babies". The best definition I have found was provided by "Starwarsmama" on Babycenter.com...
Short: A rainbow baby is a (miracle) baby conceived after the loss of another child.
"Rainbow Babies" are the understanding that the beauty of a rainbow does not negate the ravages of the storm. When a rainbow appears, it does not mean that the storm never happened or that the family is not still dealing with its aftermath. What it means is that something beautiful and full of light has appeared in the midst of the darkness and the clouds. Storm clouds may still loom over but the rainbow provides a counterbalance of color, energy, and much needed hope.
When looking at our history, you can see how each of our children is a true Rainbow baby.
No....this does not mean that we spoil our children rotten and teach them that they are the "exception". We are just very cognizant of the true miracle of life because of them.
Josephine AKA "JOSIE POSIE"
Right before Thanksgiving of 2011 we had our beautiful third baby Josephine Anna. As you probably have already figured out (or if you already know me), she was born with Trisomy 21 (Down Syndrome). The way I describe it is she got 23 Chromosomes from Me, 23 from Kevin, and 1 Directly from Heaven. She is pure Light.
I had determined by the time Josie was 16 weeks that she most likely had Down Syndrome. I made everybody aware of the "risk", even though some chastised me for it ("Why are you telling everybody!"). Well....I told everybody for a very good reason. I wanted her birth to be a CELEBRATION. It was NOT going to be marred with comments of "I'm sorry" or awkwardness. We were THRILLED she had SURVIVED!!! I had also spent the last 5 months preparing myself for a child with Down Syndrome. I read forums, blogs, online articles, you name it, I read it. Life with Down Syndrome is NOT a death sentence! All of the families I connected with shared the pure happiness of their lives! I know Kevin thought I was crazy and just "worrying" myself, and I feel bad that I may not have prepared him enough.
When Josie was born she was 8lbs 9oz. She was BEAUTIFUL. I took one look at her and I knew that she had Down Syndrome. The beautiful almond shaped eyes, simian crease in her palm, and the cute sandal toe gap between her big toe and her second toe were all present. I was actually the one that alerted the nursing staff that she had Down Syndrome. They were SHOCKED. Shuffled around a bit, and then said they would call down to the Special Care unit to have her looked at. The Dr., from the Special Care unit came down and assessed her and confirmed her diagnosis. It was weird....the nurses shuffled in and out quietly and it appeared as though they were expecting me to break down. I was SO happy to have our girl! Kevin appeared to be stunned and the next day revealed that he didn't know what to expect if she had Down Syndrome. Once he realized that she was really just like our other two girls, he settled in pretty quickly! The social worker came into our room to speak with us. Once she realized that I was a certified Special Education Administrator, she said, "Sooooo....basically you could teach all of us a few things..".....Ummmm....Yes.
I was shocked at how little the hospital had to offer in regards to information about Down Syndrome. One nice nurse tried to print off information from CHOP (Children's Hospital of Philadelphia) which had a Down Syndrome Clinic. But that was about it. Before Josie was discharged, she had an echocardiogram and it was determined that she did indeed have three heart defects (Ventricular Septal Defect....hole between the lower chambers, Atrial Septal Defect....hole between the upper chambers.....and a PFO.....a hole that should close but remained open and allowed blood to bypass her lungs resulting in chronic pulmonary hypertension and slight enlargement of the one side of her heart). She also had a blood disorder called Polycythemia (she made too many red cells to compensate for her heart defects) so her blood clotted VERY easily making taking blood a nightmare (her blood would clot in the needle). I do worry a little about the polycythemia as it does have a higher incidence of leukemia which is already associated with Down Syndrome...so we keep a close eye on that!
Josie also had a hearing test and managed to fail...she has had several ABR's and has officially passed the ABR (meaning her hearing nerves are fine), but has not yet passed a hearing test (meaning she most likely has a conductive hearing loss). The show Signing Time is one of the family favorites.
Josie got to go home on time and her two big sisters welcomed her with open arms!
I had determined by the time Josie was 16 weeks that she most likely had Down Syndrome. I made everybody aware of the "risk", even though some chastised me for it ("Why are you telling everybody!"). Well....I told everybody for a very good reason. I wanted her birth to be a CELEBRATION. It was NOT going to be marred with comments of "I'm sorry" or awkwardness. We were THRILLED she had SURVIVED!!! I had also spent the last 5 months preparing myself for a child with Down Syndrome. I read forums, blogs, online articles, you name it, I read it. Life with Down Syndrome is NOT a death sentence! All of the families I connected with shared the pure happiness of their lives! I know Kevin thought I was crazy and just "worrying" myself, and I feel bad that I may not have prepared him enough.
When Josie was born she was 8lbs 9oz. She was BEAUTIFUL. I took one look at her and I knew that she had Down Syndrome. The beautiful almond shaped eyes, simian crease in her palm, and the cute sandal toe gap between her big toe and her second toe were all present. I was actually the one that alerted the nursing staff that she had Down Syndrome. They were SHOCKED. Shuffled around a bit, and then said they would call down to the Special Care unit to have her looked at. The Dr., from the Special Care unit came down and assessed her and confirmed her diagnosis. It was weird....the nurses shuffled in and out quietly and it appeared as though they were expecting me to break down. I was SO happy to have our girl! Kevin appeared to be stunned and the next day revealed that he didn't know what to expect if she had Down Syndrome. Once he realized that she was really just like our other two girls, he settled in pretty quickly! The social worker came into our room to speak with us. Once she realized that I was a certified Special Education Administrator, she said, "Sooooo....basically you could teach all of us a few things..".....Ummmm....Yes.
I was shocked at how little the hospital had to offer in regards to information about Down Syndrome. One nice nurse tried to print off information from CHOP (Children's Hospital of Philadelphia) which had a Down Syndrome Clinic. But that was about it. Before Josie was discharged, she had an echocardiogram and it was determined that she did indeed have three heart defects (Ventricular Septal Defect....hole between the lower chambers, Atrial Septal Defect....hole between the upper chambers.....and a PFO.....a hole that should close but remained open and allowed blood to bypass her lungs resulting in chronic pulmonary hypertension and slight enlargement of the one side of her heart). She also had a blood disorder called Polycythemia (she made too many red cells to compensate for her heart defects) so her blood clotted VERY easily making taking blood a nightmare (her blood would clot in the needle). I do worry a little about the polycythemia as it does have a higher incidence of leukemia which is already associated with Down Syndrome...so we keep a close eye on that!
Josie also had a hearing test and managed to fail...she has had several ABR's and has officially passed the ABR (meaning her hearing nerves are fine), but has not yet passed a hearing test (meaning she most likely has a conductive hearing loss). The show Signing Time is one of the family favorites.
Well Meaning Comments that Cut Like a Knife...
Over the years we have had many people try to offer up "Well Meaning" words....that frankly should have stayed in their mouths. Here are some Top Comments (I will star the ones said by more than one person):
1. If it was meant to be....it will be*- Seriously people...does that mean it was meant for me to endure the torture of loss over and over again? I swear I am jealous of the women who just don't get pregnant....you look at the stick...it says, "not pregnant", you get depressed, you move on. I look at a stick, it most always says, "Pregnant", I panic, sweat, go to multiple drawn out appointments, and endure DAYS of the physical torture when the baby passes away, followed by weeks of Post Traumatic Stress.
2. You must be trying for a boy*- Ummmmm.....actually we would be happy with "Alive". Even if we pursued adoption, we would take what we got. I'm not "putting in an order".
3. Kevin can only shoot out girls***- I know he laughs about this himself....but I don't think people realize what message they are sending. Frankly....out of 9 pregnancies....you think statistically none of them were boys? Really? Go back to math class.
4. You should appreciate the children you have****- This has nothing to do with not appreciating my children. We have a dream to have a large family, and we want our children to have a lot of siblings to grow old with. I don't try to edit your dreams....please respect ours.
5. So if the baby has Down Syndrome and is a boy, are you still going to name him after Kevin?- Yes....this was said. It is still hurtful to even remember the words. Why would my baby be considered less of a baby to be able to carry Kevin's name?!
6. What are you going to DO if the baby has Down Syndrome?!- The tone led me to believe that the person was insinuating that life would be SO horrific we should consider termination. This made me sick to my stomach. My response was "We are going to live our LIVES and move on!"
7. You should just stop trying!- Oh....I didn't realize that you had an opinion regarding our reproductive health and life.
8. You must not be able to carry boys!- Ummm.....technically I have not asked for the gender of any of the babies we have lost. I'm not even sure how to respond to that one.
9. "So and So" only have two children and are happy! You should be happy too!- It isn't that I am NOT happy with my current children. See #4.
10. She doesn't look like she has Down Syndrome, I've worked in Special Education for years and I can usually pick them right out! (said to me by some stranger at the ENT office)- UMMM....thank you for your "expert" opinion. What does "Down Syndrome LOOK like" to you? I didn't realize that ALL people with Down Syndrome look the same! Let me call up the geneticist and have her check those chromosome results....maybe they were wrong....
11- This one isn't even well meaning...I just wanted to put it out there. DO NOT use the word "Retarded" around me, or my family (or anyone for that matter) in a derogatory manner. It is rude and offensive. I also despise the word "SPED" as in "She's a SPED kid". Know that each time you use these words....you are stomping on my heart and that of my children. How about you treat my child respectfully like the human being she is?
1. If it was meant to be....it will be*- Seriously people...does that mean it was meant for me to endure the torture of loss over and over again? I swear I am jealous of the women who just don't get pregnant....you look at the stick...it says, "not pregnant", you get depressed, you move on. I look at a stick, it most always says, "Pregnant", I panic, sweat, go to multiple drawn out appointments, and endure DAYS of the physical torture when the baby passes away, followed by weeks of Post Traumatic Stress.
2. You must be trying for a boy*- Ummmmm.....actually we would be happy with "Alive". Even if we pursued adoption, we would take what we got. I'm not "putting in an order".
3. Kevin can only shoot out girls***- I know he laughs about this himself....but I don't think people realize what message they are sending. Frankly....out of 9 pregnancies....you think statistically none of them were boys? Really? Go back to math class.
4. You should appreciate the children you have****- This has nothing to do with not appreciating my children. We have a dream to have a large family, and we want our children to have a lot of siblings to grow old with. I don't try to edit your dreams....please respect ours.
5. So if the baby has Down Syndrome and is a boy, are you still going to name him after Kevin?- Yes....this was said. It is still hurtful to even remember the words. Why would my baby be considered less of a baby to be able to carry Kevin's name?!
6. What are you going to DO if the baby has Down Syndrome?!- The tone led me to believe that the person was insinuating that life would be SO horrific we should consider termination. This made me sick to my stomach. My response was "We are going to live our LIVES and move on!"
7. You should just stop trying!- Oh....I didn't realize that you had an opinion regarding our reproductive health and life.
8. You must not be able to carry boys!- Ummm.....technically I have not asked for the gender of any of the babies we have lost. I'm not even sure how to respond to that one.
9. "So and So" only have two children and are happy! You should be happy too!- It isn't that I am NOT happy with my current children. See #4.
10. She doesn't look like she has Down Syndrome, I've worked in Special Education for years and I can usually pick them right out! (said to me by some stranger at the ENT office)- UMMM....thank you for your "expert" opinion. What does "Down Syndrome LOOK like" to you? I didn't realize that ALL people with Down Syndrome look the same! Let me call up the geneticist and have her check those chromosome results....maybe they were wrong....
11- This one isn't even well meaning...I just wanted to put it out there. DO NOT use the word "Retarded" around me, or my family (or anyone for that matter) in a derogatory manner. It is rude and offensive. I also despise the word "SPED" as in "She's a SPED kid". Know that each time you use these words....you are stomping on my heart and that of my children. How about you treat my child respectfully like the human being she is?
First Trimester Screening- Here we go again!
So we opted to do the first trimester screening simply because we wanted an early picture of our growing little one. And frankly we loved having the reassurance that all was still well on the screen. We happily go in, have our screening, complete the bloodwork, and happily go home! So far....all seems well!!! While at work, I got a phone call from the genetic counselor...."Can you talk?"
OK....what I didn't share is that the night before the screening I spent the entire night....and I mean the ENTIRE NIGHT....surfing the web about Trisomy 13 and 18....I was TERRIFIED of 13 and 18 because you may make it to term, only to have your baby die in a month or a year. I watched a beautiful YouTube video titled "99 Balloons" because he lived for 99 Days and his Father documented every one of them. It was truly the most beautiful video I think I have seen to date....but I was also sobbing on the couch while watching it. After the amount of loss we had gone through....the thought of being SO close to getting to keep your baby, only for them to be taken away again caused a MASSIVE panic attack that night. I could barely breathe. If you care to watch it, here is the link: http://www.youtube.com/watch?v=th6Njr-qkq0 (make sure you have tissues near by).
I take a deep breath and close my office door to hear what she has to say. She calmly tells me that the ultrasound showed our babies nuchal fold to be "normal" but at the "upper extreme". I am not sure why you have an "average range"....if you aren't going to call it "normal". Anyways....she then goes on to explain that my blood tests show that we have a 1:53 risk of the baby having Trisomy 21 otherwise known as Down Syndrome. Now....this news doesn't panic me. I have been working in Special education for over 10 years. Down Syndrome we agreed a long time ago....we were fine with. I quickly ask about Trisomy 13 and 18. She tells me my risk is fine for those two. PHEW! Please don't misinterpret what I am relieved about. I know that I would never EVER be able to terminate my baby....EVER. I was SO relieved that I would not have to go through another death....hopefully. My baby still only had a 40% survival rate based on my past. Now with the possible complications of potential Down Syndrome....it might be more complicated. I calculate out the actual risk....2%....that gives us a 98% chance that the baby is chromosomally OK. But I had a weird Spidey Sense tingling again. Based on our past losses and two confirmed trisomies....the likelihood that the baby has Trisomy 21 is most likely higher than 2%. The genetic counselor suggests and amnio which I politely turn down. No thank you. I know two people who have lost their babies or had their amniotic sacs ruptured resulting in a premature birth at 24 weeks (she made it against the Dr's suggestion to abort). She seems stunned that I refuse the amnio and am RELIEVED.
My MFM is monitoring me every 6 weeks with Level 2 ultrasounds. I have now again started surfing the web and have joined multiple forums including one called "Down Syndrome Pregnancy" on babycenter.com. It was one of the best forums EVER. Some had a diagnosis and others were waiting it out. I learned SO much from these other parents. I also had a new lens to look through when heading into ultrasound appointments. At our 16 week appt., we found that our baby had a "Echogenic Focus" on her heart....fancy word for "Calcium Deposit" within the wall of her heart. This use to be a marker for Down Syndrome but is also found in the general population. Another OB tried to convince me to do the amnio. I again explained that it only put my baby at risk, and I didn't need to know. The baby looked great on the ultrasound so far....let her BE. All the while....every time I threw up....Kevin and I would CHEER....we knew it was a great sign.
We took the ultrasound picture and had it put on a shirt with the words "Guess What?" surrounding it. On the back, in large pink letters it said, "I'm A GIRL!" We again drove to NY and shared with our families.
OK....what I didn't share is that the night before the screening I spent the entire night....and I mean the ENTIRE NIGHT....surfing the web about Trisomy 13 and 18....I was TERRIFIED of 13 and 18 because you may make it to term, only to have your baby die in a month or a year. I watched a beautiful YouTube video titled "99 Balloons" because he lived for 99 Days and his Father documented every one of them. It was truly the most beautiful video I think I have seen to date....but I was also sobbing on the couch while watching it. After the amount of loss we had gone through....the thought of being SO close to getting to keep your baby, only for them to be taken away again caused a MASSIVE panic attack that night. I could barely breathe. If you care to watch it, here is the link: http://www.youtube.com/watch?v=th6Njr-qkq0 (make sure you have tissues near by).
I take a deep breath and close my office door to hear what she has to say. She calmly tells me that the ultrasound showed our babies nuchal fold to be "normal" but at the "upper extreme". I am not sure why you have an "average range"....if you aren't going to call it "normal". Anyways....she then goes on to explain that my blood tests show that we have a 1:53 risk of the baby having Trisomy 21 otherwise known as Down Syndrome. Now....this news doesn't panic me. I have been working in Special education for over 10 years. Down Syndrome we agreed a long time ago....we were fine with. I quickly ask about Trisomy 13 and 18. She tells me my risk is fine for those two. PHEW! Please don't misinterpret what I am relieved about. I know that I would never EVER be able to terminate my baby....EVER. I was SO relieved that I would not have to go through another death....hopefully. My baby still only had a 40% survival rate based on my past. Now with the possible complications of potential Down Syndrome....it might be more complicated. I calculate out the actual risk....2%....that gives us a 98% chance that the baby is chromosomally OK. But I had a weird Spidey Sense tingling again. Based on our past losses and two confirmed trisomies....the likelihood that the baby has Trisomy 21 is most likely higher than 2%. The genetic counselor suggests and amnio which I politely turn down. No thank you. I know two people who have lost their babies or had their amniotic sacs ruptured resulting in a premature birth at 24 weeks (she made it against the Dr's suggestion to abort). She seems stunned that I refuse the amnio and am RELIEVED.
My MFM is monitoring me every 6 weeks with Level 2 ultrasounds. I have now again started surfing the web and have joined multiple forums including one called "Down Syndrome Pregnancy" on babycenter.com. It was one of the best forums EVER. Some had a diagnosis and others were waiting it out. I learned SO much from these other parents. I also had a new lens to look through when heading into ultrasound appointments. At our 16 week appt., we found that our baby had a "Echogenic Focus" on her heart....fancy word for "Calcium Deposit" within the wall of her heart. This use to be a marker for Down Syndrome but is also found in the general population. Another OB tried to convince me to do the amnio. I again explained that it only put my baby at risk, and I didn't need to know. The baby looked great on the ultrasound so far....let her BE. All the while....every time I threw up....Kevin and I would CHEER....we knew it was a great sign.
We took the ultrasound picture and had it put on a shirt with the words "Guess What?" surrounding it. On the back, in large pink letters it said, "I'm A GIRL!" We again drove to NY and shared with our families.
Voo Doo Medicine
OK....it isn't really Voo Doo!
I made the decision to visit a local acupuncturist that my friend recommended. He specialized in infertility and also was trained in Chinese medicine. I figured if nothing else....I would at least be able to relax with some needles sticking out of me.
I calculated the cost and estimated that this would be a $2000 risk vs the $20,000 of IVF. Well worth the risk. I met with this very nice, kind acupuncturist/ Chinese herbalist. He recommended getting my hormones balanced, working towards diminishing my stress levels, and then seeing how things panned out. His recommendation was to first use this shake that would balance my estrogen levels in my body, and also gave me this tea that was to detoxify my body. I was also to do acupuncture sessions once a week. I will say....I never felt better in my life. My skin cleared up, I was less sick, it was either a really great placebo....or it worked. I didn't follow exact directions and we did get pregnant 2 months in. Now....I did get a two month benefit, but for anybody that has researched this stuff knows....and egg takes 90 days to develop. That means that it had 30 initial days forming in poor conditions and then 60 days in a better state. Did this make a difference? I will never know for sure.
I continued to go to acupuncture treatments for the entire first trimester.
I made the decision to visit a local acupuncturist that my friend recommended. He specialized in infertility and also was trained in Chinese medicine. I figured if nothing else....I would at least be able to relax with some needles sticking out of me.
I calculated the cost and estimated that this would be a $2000 risk vs the $20,000 of IVF. Well worth the risk. I met with this very nice, kind acupuncturist/ Chinese herbalist. He recommended getting my hormones balanced, working towards diminishing my stress levels, and then seeing how things panned out. His recommendation was to first use this shake that would balance my estrogen levels in my body, and also gave me this tea that was to detoxify my body. I was also to do acupuncture sessions once a week. I will say....I never felt better in my life. My skin cleared up, I was less sick, it was either a really great placebo....or it worked. I didn't follow exact directions and we did get pregnant 2 months in. Now....I did get a two month benefit, but for anybody that has researched this stuff knows....and egg takes 90 days to develop. That means that it had 30 initial days forming in poor conditions and then 60 days in a better state. Did this make a difference? I will never know for sure.
I continued to go to acupuncture treatments for the entire first trimester.
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