In January 2008, Kyle and I decided that we were ready to expand our family. It was not until August of 2008 that we got a BFP (big fat positive on a pregnancy test). Now I know that there are plenty of people that it takes a lot longer than 8 months to get that BFP. I truely beloeve that when you are ready to be a mom that even waitng a month for a BFP can be ahrd. We were so excited that our family was growing. We shared our good news with family and a few close friends.
At 13wks we shared our news with the world, two days later I started bleeding. I knew that it was over at that moment, but I had my husband take me to the ER, just in case. Even though I felt it in my gut, I hoped and prayed that I was wrong. I wasn't. I was devasted.
The whole experience at the hospital that we went was terrible. They had me drink a ton of water and only after i had finished would they call the ultasound tech to come in. I had to pee so bad that I was in pain. And the tech took like 45 minutes to get there. They when she finally got there she refused to let my husband come back with me. I was so scared and I just wanted him close. And she was so rude and cruel about it. Luckily my doctor was much more compasiate about the whole thing.
People who never experience a lost like this don't know what to say, they try but some how it just falls short. I didn't want to hear that I could have more children, I had lost a child. A child I never got to hold or kiss or even meet. But my child had a place in my heart from the moment I knew they existed. After the inital saddness I felt number for awhile. It was very hard to be around friends especially since several were pregnact at the time. I was happy for them but angry and sad for myself.
One day I came across a pregnancy book in my basement and it broke the damn I had built to hold back my feeling and I through it clear across the room and yelled and cried for awhile. Things got better after that. I had alot of issues bleeding for several months afterward and so we could not start trying again until February. We were lucky and the first month of trying again we got a BFP. And in December of 2009 I delivered our daugther, Riley.
Riley
Sunday, March 27, 2011
Long absence
So I realized that I have not posted for more then a week. Life has been a bit crazy recently. My sister-in-law is getting married in 2 weeks and I have been doing wedding stuff. Look for a new post here shortly.
Wednesday, March 16, 2011
Curious people
At first glance you may not realize that Riley is different. Though when you take a second look, you would notice her trach, us suctioning her, or us giving her milk through her g-tube. People's reaction to her some times drives me nuts. I would rather have someone come up and ask what we are doing or whatever other question is on their mind about her then stare from across the room. I am happy to educate someone about her or her condition, but don't stare.
Parents are the funniest though. kids are always so curious, so you will hear the child ash a question in a normal voice and the parent whispering an answer back. I have no problem talking to people I don't know, I take after my dad, so I always tell the parent that is tis ok and habe them come over. The normal question is "What is that?" while pointing at her trach. I calmly explain that is how she breathsand the child responses with "oh, ok" and that is the end of it
It is natural to be curious about something that you have never seen before. I would think that most parents of a special child would rather have you ask you question instead of staring at them. That being said don't ask "What's wrong with her/him?" There is nothing wrong with my child she just has some special needs, but I love her jsut the same as you love your "normal" child.
Parents are the funniest though. kids are always so curious, so you will hear the child ash a question in a normal voice and the parent whispering an answer back. I have no problem talking to people I don't know, I take after my dad, so I always tell the parent that is tis ok and habe them come over. The normal question is "What is that?" while pointing at her trach. I calmly explain that is how she breathsand the child responses with "oh, ok" and that is the end of it
It is natural to be curious about something that you have never seen before. I would think that most parents of a special child would rather have you ask you question instead of staring at them. That being said don't ask "What's wrong with her/him?" There is nothing wrong with my child she just has some special needs, but I love her jsut the same as you love your "normal" child.
Monday, March 14, 2011
Springtime
We had such a nice weekend here, then this mornign I have to wear my winter cost. I am so tired of cold weather.. COme on spring and short sleeves.
Friday, March 11, 2011
Weight Loss plan update
So I started some new things on Monday and thought I would do a quick update about how it is going. Out of the 5 days since I put my new plan into effect I have walked on three of them, I have only done extra exercising with my daugther on 2. I have cut back a bit on my snacking, but my sweet tooth is proving to my downfall. I have also increased my water intake but not completely to where I want it. So if I was grading myself I would give myself a C+. I am not giving up yet though.
Thursday, March 10, 2011
Medical Terms
So I use alot of medical terms in my posts, so i am going to put a list on the side bar with the most used ones and a quick overview of each. If anyone eatns more information about a specific one loet me know and I will do a post about it.
Hearing aids
On 2/7 Riley went for a MRI for a few reasons (1) her hydrocephalus, (2) the fact that she has a shunt, (3) to have a good look at the structures of her brain, and (4) to have a baseline if she has any issues down the line to compare too. Since she was sedated for the procedure they did an auditory brainstem response test (ABR). Which is a hearing test were they attach electrodes to her head and record the brain activity when different sounds are played. We had this one done as oppose to a normal hearing test because we had tried one of those several months back but she was too young and did not understand that things made noise so she failed it.
The results we got back from the ABR were that she had moderate hearing loss. She is hearing at a 50-60 decibels range. To put that in perspective 20 decibels is a whisper, 120 decibels is a jet engine, normal speech is at 50 decibels.
Since Ri is hearing just at speech level we decided to get her hearing aids. So you may ask if she is hearing speech why get hearing aids. For a couple of reasons: (1) if you ever get sick or get an ear infections you can loss 20 decibels in hearing so then she would not hear speech, (2) hearing aids will amplify what she is hearing and make it easier for her to understand speech, and (3) she will already have a speech delay due to her Tetrasomy 18p (T18p) so we thought that we would not put any more barriers in front of her.
So yesterday I took her to get fitted for her behind-the-ear hearing aids (BTE). I am amazed at how small they were and how light weight they are. The audiologist took molds of the inside of Ri's ears and they will custom make the part that goes in her ear. We go back in 3 weeks to pick them up and learn how to use and take care of them. When we get them I will put up a picture of them.
The results we got back from the ABR were that she had moderate hearing loss. She is hearing at a 50-60 decibels range. To put that in perspective 20 decibels is a whisper, 120 decibels is a jet engine, normal speech is at 50 decibels.
Since Ri is hearing just at speech level we decided to get her hearing aids. So you may ask if she is hearing speech why get hearing aids. For a couple of reasons: (1) if you ever get sick or get an ear infections you can loss 20 decibels in hearing so then she would not hear speech, (2) hearing aids will amplify what she is hearing and make it easier for her to understand speech, and (3) she will already have a speech delay due to her Tetrasomy 18p (T18p) so we thought that we would not put any more barriers in front of her.
So yesterday I took her to get fitted for her behind-the-ear hearing aids (BTE). I am amazed at how small they were and how light weight they are. The audiologist took molds of the inside of Ri's ears and they will custom make the part that goes in her ear. We go back in 3 weeks to pick them up and learn how to use and take care of them. When we get them I will put up a picture of them.
Tuesday, March 8, 2011
New weight loss plan
So I have not done much in the way of lossing weight or getting ready to run in a marathon. And I hit a bot of rock bottom and have finally realized that I really need to loss some weight. I am at an all time high on my weight, my joints have started bothering me, and I got winded the other day walking up the stairs. I am not even 30 yet, this is a big problem.
So as of yesterday, I am going to start walking every day at work and am increasing the amount of water that I drink, and limiting my snacking. I am also going to start working out with my daugther (ie taking her for walks, dancing with her, actively playing with her) more than I have been. I am hoping that some of these things will help me to drop some pounds and motivate me to move even more.
So as of yesterday, I am going to start walking every day at work and am increasing the amount of water that I drink, and limiting my snacking. I am also going to start working out with my daugther (ie taking her for walks, dancing with her, actively playing with her) more than I have been. I am hoping that some of these things will help me to drop some pounds and motivate me to move even more.
Saturday, March 5, 2011
Coming to terms with her diagnosis
When I found out I was pregnant I could not help but plan and dream of what my child's future was going to be. At 19 weeks we were told she had spinia bifida and we had to shift those dream alittle. So now maybe she won;t play sports and may walk a bit late, but for the most part should be able to lead a pretty normal life. We expected her to be in NICU for a couple of weeks then home. As those couple of weeks changed to a month then 4 months we realized that life would never be "normal".
A month after her birth we got the news that she had a chromosome abnormality*. I remember sitting in a conference room near the NICU surrounded by doctors, my husband and parents on my right and my daugther's primary nurse, Lana, on my left. The genetic counselor telling us there was a problem with her genetic code and that she would have mental retardation and probable would never be able to take care of herself or live on her own. My world came crashing down around me. I burst into tears and heard nothing else from the rest of the meeting. How could my prefect baby have much a terrible future? She was suppose to go to college, meet a nice man, get married, and give me grandbabies. Not being living with me for her life. I was angry at the doctors, at the world, at God. My friends all had this perfectly health little babies. Why were their babies fine and mine wasn't? I had to moron the loss of all of those dreams.
When we first got her home some times it felt more like we were her caretakers instead of parents. There were lots of doctor's appointment to go to, our home was invaded by nurses at night, there were all kinds of medical equpiment that now took over our cute nursery. Now though I feel more like a parent that just happens to know alot about Riley's medical conditions. People tell me that I could be a nurse with my knowledge, I turn in tell that I only know alot about a little. Mind we still have lots of doctors that we see, but it is less often. And the nurses are still here every night, but they are more like family then stangers. The medical equipment, well that is still a big part of Riley's room but it is normal now.
Riley is now 15 months old and I have accepted her. There are still times when I am talk to my friends about their kids or we see a another child that is Riley age or younger doing things that she can't do yet and I get sad. Then I tell myself that I can't compare Riley to all kids. She will reach her milestones in time and when she does it will mean even more to us then if she was like my friend's children.
It is weird how your definition of normal changes. We recently found out that Riley has moderate hearing loss and will need hearing aids, but it in the long run of her short little live it seems like nothing. I mean I just have to makes sure she wears them and they are batteries. Easy Peasy.
But this smile makes it all worth it:
*PS I hate that term "chromosome abnormality" she may not be exactly the same as a "normal" child but which child is. Unless you are an identical twin no one chromosomes are exactly the same. So how can we really define normal. Riley is going to be who she is going to be. She will have her own definition of normal.
A month after her birth we got the news that she had a chromosome abnormality*. I remember sitting in a conference room near the NICU surrounded by doctors, my husband and parents on my right and my daugther's primary nurse, Lana, on my left. The genetic counselor telling us there was a problem with her genetic code and that she would have mental retardation and probable would never be able to take care of herself or live on her own. My world came crashing down around me. I burst into tears and heard nothing else from the rest of the meeting. How could my prefect baby have much a terrible future? She was suppose to go to college, meet a nice man, get married, and give me grandbabies. Not being living with me for her life. I was angry at the doctors, at the world, at God. My friends all had this perfectly health little babies. Why were their babies fine and mine wasn't? I had to moron the loss of all of those dreams.
When we first got her home some times it felt more like we were her caretakers instead of parents. There were lots of doctor's appointment to go to, our home was invaded by nurses at night, there were all kinds of medical equpiment that now took over our cute nursery. Now though I feel more like a parent that just happens to know alot about Riley's medical conditions. People tell me that I could be a nurse with my knowledge, I turn in tell that I only know alot about a little. Mind we still have lots of doctors that we see, but it is less often. And the nurses are still here every night, but they are more like family then stangers. The medical equipment, well that is still a big part of Riley's room but it is normal now.
Riley is now 15 months old and I have accepted her. There are still times when I am talk to my friends about their kids or we see a another child that is Riley age or younger doing things that she can't do yet and I get sad. Then I tell myself that I can't compare Riley to all kids. She will reach her milestones in time and when she does it will mean even more to us then if she was like my friend's children.
It is weird how your definition of normal changes. We recently found out that Riley has moderate hearing loss and will need hearing aids, but it in the long run of her short little live it seems like nothing. I mean I just have to makes sure she wears them and they are batteries. Easy Peasy.
But this smile makes it all worth it:
*PS I hate that term "chromosome abnormality" she may not be exactly the same as a "normal" child but which child is. Unless you are an identical twin no one chromosomes are exactly the same. So how can we really define normal. Riley is going to be who she is going to be. She will have her own definition of normal.
Wednesday, March 2, 2011
Why don't we have to take a test to be parents
So if you have read Riley's story you will know that she spent 4.5 months in the NICU. The NICU is a very interesting place to be for any period of time. You don't realise that you are holding your breath and how on edge of your seat you are in until you walk out of the NICU. If I never have to hear the beeping and alarming of the monitors in there it will be too soon. Riley is our only child, so one or both of us were at the NICU everyday, most days more than once. We only live 20-30 minutes away. The only days we were not there were during the terrible snow storms of 2009/2010 and even than we tried ad made it on several of days during the worst of it. The other time was when we had to go out of town for a wedding and then we made arrangements to have someone come see her every day. My mother also went most days as well.
Riley was in a hospital that had a very large NICU, it had upwards of 45 babies at a time. In comparsion a friend's son was in the NICU in a differnt state for 6 weeks that only had 10-15 babies. In the room my daugther was in had 12 babies in it. I was amazed at how many of the babies had no vistors at all. I understand that people hjave other children that may keep them away or maybe they lived far away. And we were there alot, but all day everyday. But we made friends with the nurses and know that some of the babies where never visited at all.
Now I am the first person to say that the NICU is a stressful place and I get that everone deals with stress in different ways. But there was a primee that was there before Riley was born and was still there when we left. And I never saw a parent, a grandparent, no one. This poor child jsut layed in bed all day everyday. The nurses would pick him up when they could, but they could not just sit next to him and talk to him, or hold his hand, or tell him that they loved him. I just don't get that. How selfish do you have to be to never visit your sick child? It killed me that days that I could not get into the hospital to see Riley, on those days I would cell the NICU severla times a day to check on her. But not seeing her for month... Can someone explain it to me please?
Riley was in a hospital that had a very large NICU, it had upwards of 45 babies at a time. In comparsion a friend's son was in the NICU in a differnt state for 6 weeks that only had 10-15 babies. In the room my daugther was in had 12 babies in it. I was amazed at how many of the babies had no vistors at all. I understand that people hjave other children that may keep them away or maybe they lived far away. And we were there alot, but all day everyday. But we made friends with the nurses and know that some of the babies where never visited at all.
Now I am the first person to say that the NICU is a stressful place and I get that everone deals with stress in different ways. But there was a primee that was there before Riley was born and was still there when we left. And I never saw a parent, a grandparent, no one. This poor child jsut layed in bed all day everyday. The nurses would pick him up when they could, but they could not just sit next to him and talk to him, or hold his hand, or tell him that they loved him. I just don't get that. How selfish do you have to be to never visit your sick child? It killed me that days that I could not get into the hospital to see Riley, on those days I would cell the NICU severla times a day to check on her. But not seeing her for month... Can someone explain it to me please?
Riley's Story
When we found out that we were pregnant my husband (Kyle) and I were soo excited. We had dreams for our child and hopes for what they would be. We choose not to find out if we were having a boy of girl. And had a lot of fun tormenting our family and friends.
At 19 weeks we went for a standard ultasound and not had a not so standard appointment. We found that our little bundle of joy has spinia bifida. This is when the baby's spinal column does not close completely early in development. So this meant that we would now be followed very closely. They were also worried about the baby's size, which was about 3 week behind where it should be. So this brought on ultasounds every 3 weeks, visits to the high risk OB/GYN, a change on the deliver hospital, visit to a cardiologist when they could not see the heart well enough, and stress test every couple of days for the last month of the pregnancy. Needless to say it was not stressful 9 months.
They finally diagnosed the baby with Failure to Thrive, which required me be induced on 12/9/09. My labor failed to progress and I had a C-section. So after 46.5 hours of labor my beautiful baby girl Riley Ann made her entrance into the world.
Riley spent the first 4 and half months of her life in the NICU. Before she left the hospital she would have 7 surgeries, and 7 different diagnosis.
Surgeries:
meningomyelocele closure
VP shunt placed
VP shunt revision
G-tube and Nissen placed
Tendon release (local anesthetic)
Tongue/lip adhesion (TLA)
Trach placed and TLA released
Diagnosis:
Fetal Myelomeningocele
Arnold-Chiari Malformation
Obstructive Sleep Apnea
GERD (Gastroesophageal Reflux Disease)
Clubfoot, bilateral
Spina Bifida with Hydrocephalus
Tetrasomy 18p
Since leaving the hospital we have added 2 more surgeries and 3 more diagnosis. She wear AFOs (ankle foot orthotics) during the day and Ponsetti shoes (which are two shoes that are attached to each other with a bar) at night to correct her clubbed feet. In September 2010 we found out that she also have central apnea so now she recieved oxygen at night.
You would think that a kid that has been thorugh as much as she has in such a short time would be a cranky kid. But that is that is the exact opposite of what she is. She is the happiest, sweetiest thing you will ever meet. She wakes up almost every morning with a smile on her face and it brings joy to me heart. So our dreams for Riley may have had to change, and we may to teach the world about her just as much as we have to teach her about the world. But day by day and smile by smile she is teaching us alot too. Until next time folks..
At 19 weeks we went for a standard ultasound and not had a not so standard appointment. We found that our little bundle of joy has spinia bifida. This is when the baby's spinal column does not close completely early in development. So this meant that we would now be followed very closely. They were also worried about the baby's size, which was about 3 week behind where it should be. So this brought on ultasounds every 3 weeks, visits to the high risk OB/GYN, a change on the deliver hospital, visit to a cardiologist when they could not see the heart well enough, and stress test every couple of days for the last month of the pregnancy. Needless to say it was not stressful 9 months.
They finally diagnosed the baby with Failure to Thrive, which required me be induced on 12/9/09. My labor failed to progress and I had a C-section. So after 46.5 hours of labor my beautiful baby girl Riley Ann made her entrance into the world.
Riley spent the first 4 and half months of her life in the NICU. Before she left the hospital she would have 7 surgeries, and 7 different diagnosis.
Surgeries:
meningomyelocele closure
VP shunt placed
VP shunt revision
G-tube and Nissen placed
Tendon release (local anesthetic)
Tongue/lip adhesion (TLA)
Trach placed and TLA released
Diagnosis:
Fetal Myelomeningocele
Arnold-Chiari Malformation
Obstructive Sleep Apnea
GERD (Gastroesophageal Reflux Disease)
Clubfoot, bilateral
Spina Bifida with Hydrocephalus
Tetrasomy 18p
Since leaving the hospital we have added 2 more surgeries and 3 more diagnosis. She wear AFOs (ankle foot orthotics) during the day and Ponsetti shoes (which are two shoes that are attached to each other with a bar) at night to correct her clubbed feet. In September 2010 we found out that she also have central apnea so now she recieved oxygen at night.
You would think that a kid that has been thorugh as much as she has in such a short time would be a cranky kid. But that is that is the exact opposite of what she is. She is the happiest, sweetiest thing you will ever meet. She wakes up almost every morning with a smile on her face and it brings joy to me heart. So our dreams for Riley may have had to change, and we may to teach the world about her just as much as we have to teach her about the world. But day by day and smile by smile she is teaching us alot too. Until next time folks..
Journey to 13.1 miles
So I am a bit late with a New Years Resolution but I find that since the arrival of my beautiful 14 month old daugther I am having a hard time being on tine for anythign. So here it is... my goal is to finish a half marathon. If my training goes well maybe even a full marathon. I am hopeful that this will be a year of great changes for myself and my daugther. If have come across this blog and don't know my daugther's story look for a separate entry for her story, for she has her own interesting story to tell. So back to me and my journey. Since I know myself and have tried before to set a goal of losting weight and failed. I have decieded instead to set some specific goals.
Goal 1: Be able to run unstop for 1 mile.
Goal 2: Be able to run unstop for 3 miles
Goal 3: Run/exericse 3 days of week
Goal 4: Start marathon training
Ultimate Goal: To finish a race
So there we are and lets hop I can follow throught on this. Wish me luck.
Goal 1: Be able to run unstop for 1 mile.
Goal 2: Be able to run unstop for 3 miles
Goal 3: Run/exericse 3 days of week
Goal 4: Start marathon training
Ultimate Goal: To finish a race
So there we are and lets hop I can follow throught on this. Wish me luck.
Welcome to my blog
I am new to this whole blogging thing, I am actually moving this blog from a different site. I am also relatively new to this whole mom thing too. I have a almost 14 month daugther who has lots of special needs, but I love her more then I ever thought was possible. So I am planning on using this blog to talk about her, my life with her and my husband, and anything thing else that happens along the way. So I guess on with the blogging...
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