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.
"Secondary Infertility" & Recurrent Loss...Less than 1% of the population
I am going to start buying Powerball tickets. I am NOT playing the right kind of lottery here.
I make an appointment with the Recurrent Loss specialist after I had researched it to death. There are a few causes of "Recurrent Loss". Anatomical errors (bi-cornate uterus etc.), Infection (like STD's etc.), Autoimmune (Lupus Anticoagulant etc.), Blood clotting disorders (Factor V Leiden etc.), Chromosomal Translocations (chromosomes that did a dance and swapped parts), and "Unknown".
So another 35 vials of blood later and an exploratory surgery (yes...I have pictures of my insides....Kevin thought it would make a good Christmas card...I disagreed), and my cause was....TA DA...."Unknown"! I checked out on all fronts.....and so did Kevin. In fact....my ovarian reserve was EXCELLENT....yet scrambled. I even went to a neurologist on the recommendation of the fertility specialist to make sure I wasn't having mini-strokes masked as migraines. My brain even checked out. My one glitch....an MTHFR gene mutation called A1298C....heterozygous (fancy term for I have ONE copy of the gene). This mutation is deemed to be the less dangerous one, and the less dangerous type (I don't have both mutated copies). Therefore...it is considered a "non-issue". Basically we review our options:
1. Gonal-F pen (better than Clomid)- risk....I already produce 17 eggs on my own each cycle....they are fearful I will end up with quads. This is not a good idea based on my history of surgery and being barely able to carry ONE to term. Also....I can't afford 6 children. I don't live in a shoe.
2- IVF with PGD- This isn't a great option as the only test certain chromosomes....and none of which I have a history of triplicating.
3- IVF with CGH- better....they test all chromosomes and implant only the "chromosomally normal" embryos. My dilemma with this option. The drugs I would be exposed to could potentially raise my risk of breast, ovarian and uterine cancer in the future. All of which I have a family history of. I'm not sure this is a hot idea. Problem number 2- the specialist thinks that there is the possibility that ALL of my eggs will have abnormal chromosomes. So....money flushed down the toilet. For those of you who don't know....some IVF clinics offer a "Insurance" program. You get so many cycles as part of the package. If you are unsuccessful, you get half of your money back. Because of my recurrent losses....I don't qualify for that program....an oxymoron if you ask me. SO.....cost= over $20,000 which if it doesn't work will drain our bank account and leave us nothing to pursue adoption.
4- Egg donor- I'm not sure why this was suggested. I have been pregnant before. I understand this option for women who have not experienced pregnancy and really long for that experience. I have been there twice. I don't need additional stretch marks. I just want to grow my family. If it is down to donor eggs (and additional $4-6,000) I am good with adoption.
5- Russian Roulette- try again. Yes....because when it boiled down to it....when I asked what our success rate would be....we were told 40%. When asked what our success rate would be if we went crazy and played chromosomal Russian Roulette...40% again. Thank you sir....we will keep our $20,000 and not take out a second mortgage.
During this entire process, Kevin and I were also "counseled" that approximately 80% of couples that experience "Secondary Infertility" like US... DIVORCE. And on that note.....we left. Did we really need that statistic? It was like saying....."You know....others have called it quits over this....and that is OK!" Ummmmm....I don't remember my vows having any wording like that.
Upon the recommendation of the neurologist I saw previously, I decided to check out Eastern Medicine and see what they had to offer. I did take up the specialist and started taking more vitamin D, and folic acid.
I make an appointment with the Recurrent Loss specialist after I had researched it to death. There are a few causes of "Recurrent Loss". Anatomical errors (bi-cornate uterus etc.), Infection (like STD's etc.), Autoimmune (Lupus Anticoagulant etc.), Blood clotting disorders (Factor V Leiden etc.), Chromosomal Translocations (chromosomes that did a dance and swapped parts), and "Unknown".
So another 35 vials of blood later and an exploratory surgery (yes...I have pictures of my insides....Kevin thought it would make a good Christmas card...I disagreed), and my cause was....TA DA...."Unknown"! I checked out on all fronts.....and so did Kevin. In fact....my ovarian reserve was EXCELLENT....yet scrambled. I even went to a neurologist on the recommendation of the fertility specialist to make sure I wasn't having mini-strokes masked as migraines. My brain even checked out. My one glitch....an MTHFR gene mutation called A1298C....heterozygous (fancy term for I have ONE copy of the gene). This mutation is deemed to be the less dangerous one, and the less dangerous type (I don't have both mutated copies). Therefore...it is considered a "non-issue". Basically we review our options:
1. Gonal-F pen (better than Clomid)- risk....I already produce 17 eggs on my own each cycle....they are fearful I will end up with quads. This is not a good idea based on my history of surgery and being barely able to carry ONE to term. Also....I can't afford 6 children. I don't live in a shoe.
2- IVF with PGD- This isn't a great option as the only test certain chromosomes....and none of which I have a history of triplicating.
3- IVF with CGH- better....they test all chromosomes and implant only the "chromosomally normal" embryos. My dilemma with this option. The drugs I would be exposed to could potentially raise my risk of breast, ovarian and uterine cancer in the future. All of which I have a family history of. I'm not sure this is a hot idea. Problem number 2- the specialist thinks that there is the possibility that ALL of my eggs will have abnormal chromosomes. So....money flushed down the toilet. For those of you who don't know....some IVF clinics offer a "Insurance" program. You get so many cycles as part of the package. If you are unsuccessful, you get half of your money back. Because of my recurrent losses....I don't qualify for that program....an oxymoron if you ask me. SO.....cost= over $20,000 which if it doesn't work will drain our bank account and leave us nothing to pursue adoption.
4- Egg donor- I'm not sure why this was suggested. I have been pregnant before. I understand this option for women who have not experienced pregnancy and really long for that experience. I have been there twice. I don't need additional stretch marks. I just want to grow my family. If it is down to donor eggs (and additional $4-6,000) I am good with adoption.
5- Russian Roulette- try again. Yes....because when it boiled down to it....when I asked what our success rate would be....we were told 40%. When asked what our success rate would be if we went crazy and played chromosomal Russian Roulette...40% again. Thank you sir....we will keep our $20,000 and not take out a second mortgage.
During this entire process, Kevin and I were also "counseled" that approximately 80% of couples that experience "Secondary Infertility" like US... DIVORCE. And on that note.....we left. Did we really need that statistic? It was like saying....."You know....others have called it quits over this....and that is OK!" Ummmmm....I don't remember my vows having any wording like that.
Upon the recommendation of the neurologist I saw previously, I decided to check out Eastern Medicine and see what they had to offer. I did take up the specialist and started taking more vitamin D, and folic acid.
Baby Savannah
Ka Ching! Pregnant again. This time I am on an arsenal of pharmaceuticals. I am taking baby aspirin daily, as well as using progesterone, and in a desperate attempt to figure this out....I am injecting the mucous of pig intestines into my stomach each night (also known as Lovenox....and it is a blood thinner used to prevent unruly blood clots from suffocating my babies oxygen source).
By this time we are SO superstitious that we don't DARE speak of this pregnancy to anybody (except for our "Auntie Barb"). I have had a really hard time seeing pregnant people for quite some time. I needed to keep reminding myself that I didn't know their story. I didn't know their background. I could NOT judge them. It turned out that one of my best friends was also pregnant.....and horribly sick. Now, I don't blame her for being down....being sick stinks....unless it is your only indication that a pregnancy is healthy. You see....when pregnant with both of my daughters....I was puking my guts out. With every miscarriage I had....I maybe had a day of dizziness or queasiness....but it would quickly fade. Google it if you want and it is possible to have a perfectly healthy pregnancy without morning sickness..but morning sickness is like a reassurance stamp (and has been proven that those with morning sickness have a lower rate of miscarriage). My mother was lucky...no miscarriages, no morning sickness, three children...DONE. What killed me is that my friend would tell me about how miserable she was. Granted....she had NO idea how much I envied her situation. Yes....I would have liked to be THAT sick at that point in time. It isn't that I didn't want to hear about her pregnancy...I just wanted to hear that she was looking forward to the baby. Tell me about the nursery....tell me about your hopes, dreams, etc. Please, please, please.....do not complain to me about being pregnant.
If you are reading this....please don't hate me. I love you and I know that you had no intention of hurting me.
Things seemed to be going well....I had a few small bleeds, but the MFM attributed it to a subchorionic hemorrhage. At 10.5 weeks....babies heartbeat was excellent....150's, and growth was perfect. We happily loaded in the car and headed to NY for Thanksgiving to FINALLY share with our family. While staying at my parents house, my father noticed the arsenal of needles and told me that I was "stupid". I know that he said it because he didn't want to see me in danger....but could you have used a different term rather than "stupid"? The cat was out of the bag. By the end of Thanksgiving, all family members knew that things were looking up! On the 8 hour car ride....we had even settled on the name Savannah for a girl.
Black Friday Tradition. Every Black Friday my mother and I force march the mall and local stores. Yes....we are part of the crazy crowd....but the 10am crowd....not the 4am crowd. We were in the Bon-Ton and I was purchasing new frying pans (great deal), when I didn't feel well. My mother paid for the pans as I excused myself to the restroom. Spotting. My arch nemesis had shown its ugly face. I tried not to panic and wrote it off that I had done a lot of walking and I was on blood thinners which would make me more prone to bleeding. We went to have lunch and head home. The next day, my mother and I took the girls to see the movie Tangled. I had that eerie feeling that something was still not right.
That Sunday I was packing and had gone into the bathroom to take a shower. I had been wearing a medi-alert bracelet due to the blood thinners.....and it ominously fell off of my wrist. The clasp had broken and it tumbled onto the hard tile floor (I can still hear the clank). At that very moment, I began bleeding and knew immediately that I needed to get to a hospital. Kevin and I rushed off and left the girls with my parents. We accidentally took a wrong turn and went to the wrong hospital. I meant to go one place, but ended up at the hospital I was actually born at. Either way....they did an ultrasound and confirmed that baby Savannah had passed away. We were devastated. How could this happen?! This is impossible! Her perfect little body lay motionless on the screen. The told me that there was no way I was going to be able to travel back to NH without risking bleeding to death on the way. My only option was another D&C. I actually insisted the do another ultrasound beforehand to make sure they weren't mistaken. I was on the brink of losing my mind.
How could this happen.....again?
Upon returning to NH, the physician in NY called me at home. It turned out that our little baby had Trisomy 9 (three copies of the 9th chromosome). Again.....VERY rare. She wanted to call to make sure we had both had our chromosomes tested. We had. The genetic counselor called me upon learning the news and shared that the entire office was in shock. She described it as "lightening striking twice" that we would have two very rare disorders occur. I was then referred to Boston IVF. After a lot of research I found the New England Fertility Center and a Dr. there that specialized in recurrent losses. I made an appointment to pick his brain.
By this time we are SO superstitious that we don't DARE speak of this pregnancy to anybody (except for our "Auntie Barb"). I have had a really hard time seeing pregnant people for quite some time. I needed to keep reminding myself that I didn't know their story. I didn't know their background. I could NOT judge them. It turned out that one of my best friends was also pregnant.....and horribly sick. Now, I don't blame her for being down....being sick stinks....unless it is your only indication that a pregnancy is healthy. You see....when pregnant with both of my daughters....I was puking my guts out. With every miscarriage I had....I maybe had a day of dizziness or queasiness....but it would quickly fade. Google it if you want and it is possible to have a perfectly healthy pregnancy without morning sickness..but morning sickness is like a reassurance stamp (and has been proven that those with morning sickness have a lower rate of miscarriage). My mother was lucky...no miscarriages, no morning sickness, three children...DONE. What killed me is that my friend would tell me about how miserable she was. Granted....she had NO idea how much I envied her situation. Yes....I would have liked to be THAT sick at that point in time. It isn't that I didn't want to hear about her pregnancy...I just wanted to hear that she was looking forward to the baby. Tell me about the nursery....tell me about your hopes, dreams, etc. Please, please, please.....do not complain to me about being pregnant.
If you are reading this....please don't hate me. I love you and I know that you had no intention of hurting me.
Things seemed to be going well....I had a few small bleeds, but the MFM attributed it to a subchorionic hemorrhage. At 10.5 weeks....babies heartbeat was excellent....150's, and growth was perfect. We happily loaded in the car and headed to NY for Thanksgiving to FINALLY share with our family. While staying at my parents house, my father noticed the arsenal of needles and told me that I was "stupid". I know that he said it because he didn't want to see me in danger....but could you have used a different term rather than "stupid"? The cat was out of the bag. By the end of Thanksgiving, all family members knew that things were looking up! On the 8 hour car ride....we had even settled on the name Savannah for a girl.
Black Friday Tradition. Every Black Friday my mother and I force march the mall and local stores. Yes....we are part of the crazy crowd....but the 10am crowd....not the 4am crowd. We were in the Bon-Ton and I was purchasing new frying pans (great deal), when I didn't feel well. My mother paid for the pans as I excused myself to the restroom. Spotting. My arch nemesis had shown its ugly face. I tried not to panic and wrote it off that I had done a lot of walking and I was on blood thinners which would make me more prone to bleeding. We went to have lunch and head home. The next day, my mother and I took the girls to see the movie Tangled. I had that eerie feeling that something was still not right.
That Sunday I was packing and had gone into the bathroom to take a shower. I had been wearing a medi-alert bracelet due to the blood thinners.....and it ominously fell off of my wrist. The clasp had broken and it tumbled onto the hard tile floor (I can still hear the clank). At that very moment, I began bleeding and knew immediately that I needed to get to a hospital. Kevin and I rushed off and left the girls with my parents. We accidentally took a wrong turn and went to the wrong hospital. I meant to go one place, but ended up at the hospital I was actually born at. Either way....they did an ultrasound and confirmed that baby Savannah had passed away. We were devastated. How could this happen?! This is impossible! Her perfect little body lay motionless on the screen. The told me that there was no way I was going to be able to travel back to NH without risking bleeding to death on the way. My only option was another D&C. I actually insisted the do another ultrasound beforehand to make sure they weren't mistaken. I was on the brink of losing my mind.
How could this happen.....again?
Upon returning to NH, the physician in NY called me at home. It turned out that our little baby had Trisomy 9 (three copies of the 9th chromosome). Again.....VERY rare. She wanted to call to make sure we had both had our chromosomes tested. We had. The genetic counselor called me upon learning the news and shared that the entire office was in shock. She described it as "lightening striking twice" that we would have two very rare disorders occur. I was then referred to Boston IVF. After a lot of research I found the New England Fertility Center and a Dr. there that specialized in recurrent losses. I made an appointment to pick his brain.
What Kind of Sick Lottery have We Won?
No Surprises here! Pregnant again! My new OB/GYN has no worries about me not being "fertile". Again, we are closely monitored and this time I get to have a Maternal Fetal Medicine Specialist on hand too!
My first ultrasound does not go as planned. On the screen is an irregular shaped black hole with a white cloud inside. The ultrasound technician goes eerily silent and quickly gets another technician to take a look. Yes....I tend to draw crowds now when I go for appointments. They quietly discuss whether or not I have a molar pregnancy.....to which I state out loud, "YOU HAVE GOT TO BE KIDDING ME!". For those of you who do not know what a molar pregnancy is, it is not something you want to have.....EVER. Basically the cells grow out of control and instead of forming a cute baby, become a cancerous tumor that invades your body and eventually causes your organ systems to fail. Even after having a molar pregnancy removed, you may need to undergo chemotherapy. How do I know all of this? Well.....I have delved into an online underworld of pregnancy loss and have learned probably more than most specialists can share at this point (and they even agree with me on that fact). We are quickly ushered upstairs to meet with the MFM and OB. Both concur that although they do not believe it to be molar (PHEW), it is definitely not viable and there is again, no heartbeat detected. What appears to be a placenta is already atrophying and tearing away. Awesome. My body is scrambled, yet efficient. Again, another D&C for chromosomal testing, but the results were inconclusive. Now this time I end up with a fever, horrible stomach pains, a raging infection, and severe joint pain that requires prednisone for me to move at all.
I am sitting in my car one afternoon and the MFM gives me a call on my cell phone. He basically says that he has no idea what is possibly wrong with me. His only idea at this point is that I have an underlying autoimmune problem or undiagnosed blood clotting disorder. Both he and the OB send me to a different Rheumatologist to be re-evaluated. His current plan is that the next time I am pregnant....he is going to "Throw the Pharmacy at me". His words.
I meet with the new Rheumatologist. I even drag Kevin so that I can vouch for the fact that I am NOT a drug user or abuser of alcohol. 25 vials of blood later....and he isn't any closer than the original guy. The exception is that I seem to find one specialist that is more pompous than the last. He basically tells me that the recent issue to my joints was basically my body "over reacting". Yup....my body is a hypochondriac without me knowing about it. Kevin tries to tell this man that this has been going on for years and that I am not just whining about being a "little uncomfortable". He dismisses both of us and we go on our way into the land of pharmaceuticals.
My first ultrasound does not go as planned. On the screen is an irregular shaped black hole with a white cloud inside. The ultrasound technician goes eerily silent and quickly gets another technician to take a look. Yes....I tend to draw crowds now when I go for appointments. They quietly discuss whether or not I have a molar pregnancy.....to which I state out loud, "YOU HAVE GOT TO BE KIDDING ME!". For those of you who do not know what a molar pregnancy is, it is not something you want to have.....EVER. Basically the cells grow out of control and instead of forming a cute baby, become a cancerous tumor that invades your body and eventually causes your organ systems to fail. Even after having a molar pregnancy removed, you may need to undergo chemotherapy. How do I know all of this? Well.....I have delved into an online underworld of pregnancy loss and have learned probably more than most specialists can share at this point (and they even agree with me on that fact). We are quickly ushered upstairs to meet with the MFM and OB. Both concur that although they do not believe it to be molar (PHEW), it is definitely not viable and there is again, no heartbeat detected. What appears to be a placenta is already atrophying and tearing away. Awesome. My body is scrambled, yet efficient. Again, another D&C for chromosomal testing, but the results were inconclusive. Now this time I end up with a fever, horrible stomach pains, a raging infection, and severe joint pain that requires prednisone for me to move at all.
I am sitting in my car one afternoon and the MFM gives me a call on my cell phone. He basically says that he has no idea what is possibly wrong with me. His only idea at this point is that I have an underlying autoimmune problem or undiagnosed blood clotting disorder. Both he and the OB send me to a different Rheumatologist to be re-evaluated. His current plan is that the next time I am pregnant....he is going to "Throw the Pharmacy at me". His words.
I meet with the new Rheumatologist. I even drag Kevin so that I can vouch for the fact that I am NOT a drug user or abuser of alcohol. 25 vials of blood later....and he isn't any closer than the original guy. The exception is that I seem to find one specialist that is more pompous than the last. He basically tells me that the recent issue to my joints was basically my body "over reacting". Yup....my body is a hypochondriac without me knowing about it. Kevin tries to tell this man that this has been going on for years and that I am not just whining about being a "little uncomfortable". He dismisses both of us and we go on our way into the land of pharmaceuticals.
Something isn't Right....again...
Three days after our blissful Christmas surprise, I miscarried while at work. THANK GOD it was over the holiday break so I was the only one in the building at the time and made a nice exit (stage left). Now, when we miscarried the first time, we really believed it was a fluke. We had gotten to the point where we really believed we just had "bad luck". Also, I had several other friends tell me that either they themselves or one of their friends had had a miscarriage. They came out of the woodwork. Now the second miscarriage was a blow to our hearts....but we were thankful it was really early on. I made an appointment with my OB/GYN at the time and wanted her to get a reading on my hormones. I had that Spidey sense tingling that something was "Off". She reluctantly agreed and ran a few blood tests. She also lied to me and told me she ran a panel for blood clotting disorders at the time....later to find out she didn't. I suggested that maybe I should see a Reproductive Endocrinologist. She brushed me off quickly and said that it wasn't necessary at that point in time. I just had "bad luck". She also referred to me as a "Holiday Nightmare". Sensitive I know. I had lost a baby at both Christmas and Easter while at her office.
We accepted what the Dr. had shared and Wha La....pregnant again. This time I was monitored more closely and had weekly ultrasounds. Granted the ultrasound technicians liked to throw in their two cents with comments like, "Why does she even have you coming in here this early.....". Oh....my mistake....I didn't realize that you had an MD. My third pregnancy started out cautiously slow. Slow growth....heartbeat....but a slow heartbeat. It didn't look good, but my baby held on. By 10.5 weeks, my babies heart had stopped. Now I was REALLY upset. SERIOUSLY....This is TWO losses in a row with a total of THREE. I ended up having a D&C and the baby ended up having Trisomy 2 (three copies of the second chromosome....which is a rather large chromosome...so it is VERY rare). My OB/GYN finally agreed to send me to the Reproductive Endocrinologist but told me that he was going to have a bad attitude. I don't care what kind of attitude they have....I care that they know what they are DOING. I also met with a genetic counselor who reviewed all of my medical history plus my family background and Kevin's background. We both had our Chromosomes tested to make sure we didn't have any balanced translocations (pieces of your chromosomes can pull a switcharoo with one another). We both checked out. She concluded that we had a streak of bad luck and that we should be successful in the future. The Reproductive Endocrinologist re-stated that Trisomy 2 is SO rare that it would be nearly impossible for it to happen again. He literally said, "You are young and health....you just have had a streak of bad luck". Apart from checking my thyroid levels and doing a DNA test for being a carrier of cystic fibrosis....we were sent on our way.
Reassured that we had simply won the worst lottery ever...we plodded ahead with a new Doctor after I couldn't go back to being termed, "The Holiday Nightmare".
We accepted what the Dr. had shared and Wha La....pregnant again. This time I was monitored more closely and had weekly ultrasounds. Granted the ultrasound technicians liked to throw in their two cents with comments like, "Why does she even have you coming in here this early.....". Oh....my mistake....I didn't realize that you had an MD. My third pregnancy started out cautiously slow. Slow growth....heartbeat....but a slow heartbeat. It didn't look good, but my baby held on. By 10.5 weeks, my babies heart had stopped. Now I was REALLY upset. SERIOUSLY....This is TWO losses in a row with a total of THREE. I ended up having a D&C and the baby ended up having Trisomy 2 (three copies of the second chromosome....which is a rather large chromosome...so it is VERY rare). My OB/GYN finally agreed to send me to the Reproductive Endocrinologist but told me that he was going to have a bad attitude. I don't care what kind of attitude they have....I care that they know what they are DOING. I also met with a genetic counselor who reviewed all of my medical history plus my family background and Kevin's background. We both had our Chromosomes tested to make sure we didn't have any balanced translocations (pieces of your chromosomes can pull a switcharoo with one another). We both checked out. She concluded that we had a streak of bad luck and that we should be successful in the future. The Reproductive Endocrinologist re-stated that Trisomy 2 is SO rare that it would be nearly impossible for it to happen again. He literally said, "You are young and health....you just have had a streak of bad luck". Apart from checking my thyroid levels and doing a DNA test for being a carrier of cystic fibrosis....we were sent on our way.
Reassured that we had simply won the worst lottery ever...we plodded ahead with a new Doctor after I couldn't go back to being termed, "The Holiday Nightmare".
Job Stressssssss
My happy family of four was plodding right along. I had just landed a
new job as an Assistant Principal at a local school district (granted I
commuted 45 mins to 1hr in the winter). Kevin also went back to school
to be a school administrator as well. Our plan was to always have 3-4
children. Now with the jobs looking like they were set, and all children
were doing well....we figured we may as well give it another go.
Some job history- I was working between two elementary buildings as the Assistant Principal, and under two very different Principal's in regards to personality. One Principal commanded a very tight ship and things were to be done in a certain way. No problems there. The second Principal was new in her role and was paranoid that all staff were out to get her. Hence where the problems happened. The paranoid principal was SO paranoid, that at one point she tried to blame the staffs dislike of her.....on me! Granted, I always defended her to others (even if I didn't agree with what she had done). How could she seriously be betraying me and trying to pin her shortcomings on me! In a nutshell....I found out that my job was being "Re-Defined". I was being moved to one building and re-titled, "Assistant Principal/ Special Education Coordinator". Now granted, I had no problem with this, with the exception of the fact that I was originally told that I may have to re-interview for my own job. WHAT!? That never did happen....I was just moved to the other building were things were clearly defined (thank you VERY much). Now a tight ship is great, and I am all about doing my job well. But I am also a Type A personality and I am a people pleaser. Therefore, I stress myself out to no end to try to make everybody happy. As I have gotten older (and I pray wiser), I have realized that there are people out there that just choose to not be happy....and no matter what I do....it won't change their behavior.
Now, throughout this stressful period of time, I ended up not feeling well and began to drop an exuberant amount of weight without trying. Every time I ate, I felt like I had knives stabbing my stomach. I literally looked gray. I went from a size 6/8, down to a 2 in a matter of weeks and my pants hung off of me. I finally went to a gastroenterologist who suspected I had Crohn's Disease. After a lovely colonoscopy...they could find nothing wrong. I was also diagnosed with Asthma after I could not shake bronchitis and had horrible episodes of wheezing. I finally did recover and we decided that since my body appeared to be "behaving" we would try for a third child!
Merry Christmas, we have a POSTIVE Pregnancy Test!
Some job history- I was working between two elementary buildings as the Assistant Principal, and under two very different Principal's in regards to personality. One Principal commanded a very tight ship and things were to be done in a certain way. No problems there. The second Principal was new in her role and was paranoid that all staff were out to get her. Hence where the problems happened. The paranoid principal was SO paranoid, that at one point she tried to blame the staffs dislike of her.....on me! Granted, I always defended her to others (even if I didn't agree with what she had done). How could she seriously be betraying me and trying to pin her shortcomings on me! In a nutshell....I found out that my job was being "Re-Defined". I was being moved to one building and re-titled, "Assistant Principal/ Special Education Coordinator". Now granted, I had no problem with this, with the exception of the fact that I was originally told that I may have to re-interview for my own job. WHAT!? That never did happen....I was just moved to the other building were things were clearly defined (thank you VERY much). Now a tight ship is great, and I am all about doing my job well. But I am also a Type A personality and I am a people pleaser. Therefore, I stress myself out to no end to try to make everybody happy. As I have gotten older (and I pray wiser), I have realized that there are people out there that just choose to not be happy....and no matter what I do....it won't change their behavior.
Now, throughout this stressful period of time, I ended up not feeling well and began to drop an exuberant amount of weight without trying. Every time I ate, I felt like I had knives stabbing my stomach. I literally looked gray. I went from a size 6/8, down to a 2 in a matter of weeks and my pants hung off of me. I finally went to a gastroenterologist who suspected I had Crohn's Disease. After a lovely colonoscopy...they could find nothing wrong. I was also diagnosed with Asthma after I could not shake bronchitis and had horrible episodes of wheezing. I finally did recover and we decided that since my body appeared to be "behaving" we would try for a third child!
Merry Christmas, we have a POSTIVE Pregnancy Test!
Body Behaving Badly
After I had had Elizabeth I did become really ill for about 6 months. I was exhausted and very weak. I had gained 35lbs with my pregnancy, yet dropped 50 without trying. I eventually went to my Dr's office to pinpoint what was going on with me. After tests revealed elevated Liver Enzymes and a Positive ANA test. I remember being at BJ's Wholesale and getting a call from the nurse. She exclaimed that the tests that were elevated in my blood work were associated with a high intake of Tylenol and alcohol. SERIOUSLY? I kindly explained to her that due to the fact that I was pregnant for 9 months, and had been nursing for the past 6 months, I had refrained from ANY alcohol, and had taken MAYBE the equivalent to ONE Tylenol. I was referred to a Rheumatologist. The first of 3. Upon entering his office, I felt like I was in an episode of the drama "House". He asked me if I was a recreational drug user and whether or not I drank heavily. When I explained the same thing I explained to my primary care's nurse, he gave me a look and commented on how not everybody is willing to be 100% truthful. WHAT?! He also went on to explain how first time mothers are not use to being "tired". UMMMM......Tired doesn't begin to explain the situation. I SLEEP....A LOT. Kevin did a LOT of work caring for Elizabeth when I could barely lift a glass of water. 23 viles of blood later, he thought that maybe I had fibromyalgia (ummmm....except I didn't have any of the necessary pressure points needed for proper diagnosis). His solution was to put me on amphetamines. He explained how the worked well for night shift workers. I swear you can't make this stuff up. He wanted to put me on SPEED. I was wired on COFFEE....let alone SPEED! I kindly declined and told him I would "give it some more time". Rumors spread around work that I had an eating disorder and I was asked frequently if I was "OK". My friend's husbands commented that I was "Too Skinny". I did eventually recover and started to feel much better.
After I had Alison, I had SO much energy it solidified the fact that the first Rheumatologist I saw was a QUACK. How could I have TWO children and be SO AWAKE!
After I had Alison, I had SO much energy it solidified the fact that the first Rheumatologist I saw was a QUACK. How could I have TWO children and be SO AWAKE!
Alison
Happy interlude!.....we immediately got pregnant again....granted her pregnancy was not quite as easy as Elizabeth's as I started bleeding profusely at exactly 34 weeks and went into pre-term labor...but thanks to Niphedipine, I was able to hold out until again 39 weeks and 1 day! Later evaluations revealed I most likely had a placental abruption with her (nice that the nurse on the phone from my NEW office suggested that I stay home, or "Go to the ER" if you want to get checked....hmmmm....the result would not have been as pretty).
Alison was Beautiful just like her sister! I couldn't believe I had two girls! I was SO excited! I didn't have any sisters growing up and was SO jealous of my friends who did. Elizabeth was getting a lifetime friend!
We had no family around us at the time of Alison's birth (my parents went back to NY the day before she was born....to save our relationship....I shall keep my comments to myself about that one...but I think my silence speaks volumes). We were very lucky to have great neighbors and our pseudo "Aunties and Uncles" who helped us out. Our "Auntie Barb" was a godsend (and still is an angel on Earth if you ask my opinion).
Alison came home from the hospital and started to get settled in. Elizabeth wanted to just smooch her just like her baby Cabbage Patch kids! The first night home, I realized that Alison appeared to be acting different from Elizabeth....she turned BLUE/GRAY.....TWICE. I thought it was the light and turned on every light bulb in the house to get a better look. She immediately looked "normal" again....sort of. She also panted a lot and was sweating when she ate. I didn't remember Elizabeth being like this. I checked with Dr. Google and found "Congenital Heart Defect" as the leading result in the search results. OMG. I called the pediatrician immediately and she had her first appt the next day as it was. We brought her in and he detected a murmer but thought it was "her circulatory system just switching over"....which is what the on-call pediatrician at the hospital also claimed when she was discharged. To be safe, he referred her to a pediatric cardiologist. We took her to the cardiologist and it was determined there after an EKG and an Echocardiogram that Alison did in fact have a Ventricular Septal Defect. Basically....fancy words for saying she had a hole between the bottom two chambers of her heart. Therefore, her blood did not pump efficiently as it had a "back-flow". It wasn't too large, and the cardiologist wanted to just check in with her at 6 months and then each year after that to determine if the hole was closing on its own. She was not terribly symptomatic, but if she started to become symptomatic as she became more mobile....we would need to re-evaluate. Again, questions came from various family members about HOW she ended up with a heart defect. I basically ended up defending myself explaining that the cardiologist explained that sometimes it "just happens". I was NOT smoking and drinking while pregnant for the love of God!
NO PEANUTS for my PEANUT!
So it is no secret to anybody who knows me what a peanut fiend I am. I grew up eating PB&J sandwiches EVERY day for 12 years of public school. My favorite candy bars were Reece's Peanut Butter Cups, Reece's Pieces, and Butterfinger bars. Seriously....I kept these people in business.
So while I was 6 months pregnant with our second little "legume" (if anybody ever signs up at babycenter.com to track their pregnancy by week, it gives you a food of some sort to compare your baby's size to....."Today she is the size of a kiwi!"), it was after we had gotten back from a trip to NY for Christmas and I was eating a box of Girl Scout Tag-Alongs. Those yummy cookies with a crunchy bottom, topped with peanut butter, and covered with delicious chocolate. Elizabeth REALLY wanted one of my cookies. Now....I had offered Elizabeth peanut butter before. She turned 1yr old the previous May and I had made her a Peanut Butter and Jelly sandwich. She refused to touch it and literally flung the plate across the table. I distinctly remember saying to myself, "How can you be my child?" I gave up on the PB&J and gave her Turkey. I attempted peanut butter maybe 2 other times....but it was a no go.
Back it up to the summertime. I was at a graduate class and Kevin had Elizabeth. He made her a PB&J sandwich. She tried it but again rejected it. He took her outside to play. Her whole face welted up. I got a call on my way home from class that she had been "bitten by a bug" while outside. He had called the pediatrician's office who had instructed him to get her some Benadryl. Being the fabulous Daddy that he is, he quickly zoomed to the nearest CVS and grabbed the Benadryl. He gave her some, and put her down for a nap (yup....in hindsight we are lucky she woke up).
Fast forward again....I gave her one of my beloved cookies. Within minutes she started violently projectile vomiting. Originally I thought she was vomiting because she had a cold and maybe the mucous was bothering her stomach. When she kept vomiting and then dry heaving I got much more worried. Then...."Pop" a red dot appeared above her eye. I asked Kevin what he thought it was and he said, "Looks like a bug bite" (see above paragraph). It was January....there were no bugs in our house. I pulled up her shirt as she started digging at her sides and she started uncontrollable coughing and dry heaving. She was covered in hives. This entire reaction was under 2 minutes in time. I said, "OMG....I think she is allergic to peanuts". Kevin thought I was originally nuts (no pun intended....well....maybe a little). We grabbed the Benadryl and just poured it down her throat before it closed off entirely. Within a few minutes, she was breathing better and stopped vomiting. We called the pediatrician's office and our loving pediatrician stayed on the phone until he determined that she would be OK and did not need to go to the hospital.
Two weeks and some allergy testing later.....NO PEANUTS or TREE NUTS allowed in our house! I was originally devastated. HOW did this happen! According to the allergist. Kevin's cat allergy, and my seasonal allergies have a high incidence of children with peanut allergies.
Fast Forward a few years....Tree Nuts are now allowed....but Peanuts are still deathly. Elizabeth is particularly annoyed with this aspect of her life and begs to go to the allergist to see if she is still allergic. I was already told that her odds of outgrowing the allergy are not in her favor based on her history of reactions.
So while I was 6 months pregnant with our second little "legume" (if anybody ever signs up at babycenter.com to track their pregnancy by week, it gives you a food of some sort to compare your baby's size to....."Today she is the size of a kiwi!"), it was after we had gotten back from a trip to NY for Christmas and I was eating a box of Girl Scout Tag-Alongs. Those yummy cookies with a crunchy bottom, topped with peanut butter, and covered with delicious chocolate. Elizabeth REALLY wanted one of my cookies. Now....I had offered Elizabeth peanut butter before. She turned 1yr old the previous May and I had made her a Peanut Butter and Jelly sandwich. She refused to touch it and literally flung the plate across the table. I distinctly remember saying to myself, "How can you be my child?" I gave up on the PB&J and gave her Turkey. I attempted peanut butter maybe 2 other times....but it was a no go.
Back it up to the summertime. I was at a graduate class and Kevin had Elizabeth. He made her a PB&J sandwich. She tried it but again rejected it. He took her outside to play. Her whole face welted up. I got a call on my way home from class that she had been "bitten by a bug" while outside. He had called the pediatrician's office who had instructed him to get her some Benadryl. Being the fabulous Daddy that he is, he quickly zoomed to the nearest CVS and grabbed the Benadryl. He gave her some, and put her down for a nap (yup....in hindsight we are lucky she woke up).
Fast forward again....I gave her one of my beloved cookies. Within minutes she started violently projectile vomiting. Originally I thought she was vomiting because she had a cold and maybe the mucous was bothering her stomach. When she kept vomiting and then dry heaving I got much more worried. Then...."Pop" a red dot appeared above her eye. I asked Kevin what he thought it was and he said, "Looks like a bug bite" (see above paragraph). It was January....there were no bugs in our house. I pulled up her shirt as she started digging at her sides and she started uncontrollable coughing and dry heaving. She was covered in hives. This entire reaction was under 2 minutes in time. I said, "OMG....I think she is allergic to peanuts". Kevin thought I was originally nuts (no pun intended....well....maybe a little). We grabbed the Benadryl and just poured it down her throat before it closed off entirely. Within a few minutes, she was breathing better and stopped vomiting. We called the pediatrician's office and our loving pediatrician stayed on the phone until he determined that she would be OK and did not need to go to the hospital.
Two weeks and some allergy testing later.....NO PEANUTS or TREE NUTS allowed in our house! I was originally devastated. HOW did this happen! According to the allergist. Kevin's cat allergy, and my seasonal allergies have a high incidence of children with peanut allergies.
Fast Forward a few years....Tree Nuts are now allowed....but Peanuts are still deathly. Elizabeth is particularly annoyed with this aspect of her life and begs to go to the allergist to see if she is still allergic. I was already told that her odds of outgrowing the allergy are not in her favor based on her history of reactions.
We Didn't See it Coming...
After a year of pure bliss being new parents to Elizabeth, Kevin and I decided that we wanted to add to our family. I got pregnant again right away....literally. I was still working at the middle school and had a great circle of friends that I also worked with. Plus, my loving husband worked just upstairs! We even coached a cross country team together. After reviewing the daycare rates where we lived, we realized that two teachers were going to be eating a lot of Cheerios to make ends meet. I had always wanted to go into school administration and was accepted into a program that started that summer. things were looking up! As a few weeks passed, I realized that I didn't feel right....I just had this gut feeling that things were not going well. I called my ob/gyn office only to be told that they would not see me as they "couldn't do anything anyways". I turned into an instantaneous wreck and was terrified to move (not easy to do when you work in a school). It was the end of the year....and rumors were spreading throughout the building. Clearly I wasn't myself. The school year came to an end and two days into summer vacation, I ended up in the ER (thank you Dr's office for refusing to see me). Our baby had a beautiful heartbeat at 7.5 weeks of 110bpm and appeared to be doing well. The growth was on track and the bleeding could not be explained. We went home and I laid on the couch re-evaluating my belief in a God. By that evening I had miscarried at home and we lost our little bean. I was told by the Dr. on-call to "collect everything for genetic testing and keep it in the fridge" (yes....the fridge....a bit morbid and mentally whacked at that point in time). So we did what we were told. We went in to the office the next day for a follow up ultrasound, only to be greeted by the ultrasound technician intern who bubbly exclaimed, "OH! Are we here to find out if we are having a boy or a girl!".....this is the first piece of evidence of multiple offices that have the worst communication skills I have witnessed. Ummmmm, "NO". Everything was confirmed at that appointment and I handed over everything for "genetic testing". When I called in 2 weeks time to find out the results, the office claimed they had "No Record" of any testing that had been done. Yup....that's right. They LOST my baby. I was LIVID. Not only did they lose everything....the OB/GYN who spoke to me on the phone actually told me that I was being "argumentative". No lady....I am a HORMONAL WRECK AND SHOULD FRANKLY SUE YOU FOR MALPRACTICE. How does an office "LOSE" something like that?! I immediately went into the office and demanded my medical records. They attempted to charge me a ridiculous rate. I was quickly ushered into the office managers office where I explained the situation. She quickly handed over my files.....FREE of charge. I had been warned to leave that practice and didn't need to be persuaded any more.
At this point, I believe I lost my faith in any higher "being". I wanted to slap anybody who exclaimed, "It just wasn't meant to be"! Ummmm....let me re-word that for you.....if it wasn't meant to be.....then "Why would I ever get pregnant to begin with?" People need to seriously think before they open their mouths. I know they were well meaning....but jeepers. I remember sitting in a graduate class looking at the cross on the wall and silently cursing it out (it was a Catholic College). An older woman who was in my class shared with me that she had lost 4 pregnancies but also had 4 children. I remember being terrified that this nightmare could happen again....but now I look back and wish I could thank her for sharing a piece of her life and story with me because it DID help in the future.
My ultrasound picture of Baby Henry #1 was neatly placed into a small photo album and tucked neatly away into my top drawer.
At this point, I believe I lost my faith in any higher "being". I wanted to slap anybody who exclaimed, "It just wasn't meant to be"! Ummmm....let me re-word that for you.....if it wasn't meant to be.....then "Why would I ever get pregnant to begin with?" People need to seriously think before they open their mouths. I know they were well meaning....but jeepers. I remember sitting in a graduate class looking at the cross on the wall and silently cursing it out (it was a Catholic College). An older woman who was in my class shared with me that she had lost 4 pregnancies but also had 4 children. I remember being terrified that this nightmare could happen again....but now I look back and wish I could thank her for sharing a piece of her life and story with me because it DID help in the future.
My ultrasound picture of Baby Henry #1 was neatly placed into a small photo album and tucked neatly away into my top drawer.
The Beginning of the Road Less Traveled...
How did we get here? I didn't see a sign in the road that led us in this direction....had I, I may have chosen to go the other way. Maybe fate made me miss that sign....for had I not traveled on this rocky, and sometimes painful road, I would not have the beautiful family that I have today.
So let me back up about 10 years... I was living as a single woman with my own apartment and fuzzbutt cat Allie, working as a special education teacher in western NY, when a friend (my current husband Kevin) and I decided over a Valentine's Day visit to NH to finally just date one another. Speed ahead 6 months...found out my job in NY had been RIF'd (no longer existed....thank you budget cuts), and decided to either move to NH or NC. I had had enough of the dreary trash can gray skies of western NY. I do not miss anything coined "Lake Effect". The day before a moving truck came to move me, I found out I most likely had cervical cancer. Throughout the future posts, you will see that timing is everything in my life. So upon hearing this news, I search the internet (slow dial up at the time so it took FOREVER), to see what this exactly meant. I did not meet any of the "risk factors" for a woman with cervical cancer at the time. I was not an IV drug user, I did not sleep around (although a comment my mother made to me at the time appeared as though she thought that I did), etc. The only thing I could find was that I used birth control pills because I had horrible periods since I was young. Apparently, the use of birth control pills had been "unofficially linked" to the possibility that my body was defenseless and unable to defend itself against anything. Needless to say, I moved to NH, got a new Dr., had two surgeries (the last began with a disclaimer, "If this doesn't work, we need to send you to an oncologist as it is very aggressive"....comforting words). I dropped the birth control pills and loaded up on vitamin A & E which were supposed to boost the immune system. Interestingly....my body repaired itself. PHEW!
A year after that ordeal, I had a new job as a Reading Specialist and English Teacher at a middle school (yes....my first job in NH...again was RIF'd), and Kevin and I happily purchased our first house and got married. Due to my past medical history, we decided to try to start our family right away as we knew that I may have problems carrying a pregnancy to term due to my prior surgeries. I had many friends try to dissuade me, "Travel and get to know one another first!".....ummmm.....I have known him....since we were 16....we were friends for years.....I didn't marry a stranger! Anyways....we were lucky and got pregnant right away. My friends and I laughed about possibly stitching me up like a turkey if my cervix decided to give way. We all held our breath.....but at 39 weeks and 1 day.....our beautiful daughter Elizabeth entered the world. She was the most beautiful and perfect baby we had ever seen! We were on Cloud 9! Kevin had also in the meantime, gone back to school to be a Business Teacher and earned his Master's Degree. He scored a job in the same school where I worked as the Computer Technology Teacher.....life was PERFECT....at that point in time.
So let me back up about 10 years... I was living as a single woman with my own apartment and fuzzbutt cat Allie, working as a special education teacher in western NY, when a friend (my current husband Kevin) and I decided over a Valentine's Day visit to NH to finally just date one another. Speed ahead 6 months...found out my job in NY had been RIF'd (no longer existed....thank you budget cuts), and decided to either move to NH or NC. I had had enough of the dreary trash can gray skies of western NY. I do not miss anything coined "Lake Effect". The day before a moving truck came to move me, I found out I most likely had cervical cancer. Throughout the future posts, you will see that timing is everything in my life. So upon hearing this news, I search the internet (slow dial up at the time so it took FOREVER), to see what this exactly meant. I did not meet any of the "risk factors" for a woman with cervical cancer at the time. I was not an IV drug user, I did not sleep around (although a comment my mother made to me at the time appeared as though she thought that I did), etc. The only thing I could find was that I used birth control pills because I had horrible periods since I was young. Apparently, the use of birth control pills had been "unofficially linked" to the possibility that my body was defenseless and unable to defend itself against anything. Needless to say, I moved to NH, got a new Dr., had two surgeries (the last began with a disclaimer, "If this doesn't work, we need to send you to an oncologist as it is very aggressive"....comforting words). I dropped the birth control pills and loaded up on vitamin A & E which were supposed to boost the immune system. Interestingly....my body repaired itself. PHEW!
A year after that ordeal, I had a new job as a Reading Specialist and English Teacher at a middle school (yes....my first job in NH...again was RIF'd), and Kevin and I happily purchased our first house and got married. Due to my past medical history, we decided to try to start our family right away as we knew that I may have problems carrying a pregnancy to term due to my prior surgeries. I had many friends try to dissuade me, "Travel and get to know one another first!".....ummmm.....I have known him....since we were 16....we were friends for years.....I didn't marry a stranger! Anyways....we were lucky and got pregnant right away. My friends and I laughed about possibly stitching me up like a turkey if my cervix decided to give way. We all held our breath.....but at 39 weeks and 1 day.....our beautiful daughter Elizabeth entered the world. She was the most beautiful and perfect baby we had ever seen! We were on Cloud 9! Kevin had also in the meantime, gone back to school to be a Business Teacher and earned his Master's Degree. He scored a job in the same school where I worked as the Computer Technology Teacher.....life was PERFECT....at that point in time.
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