We have had a busy couple days THANK GOODNESS happy tax day is over! I like taxes but human nature is to procrastinate the unhappy things so we get totally slammed not to mention I have a family of procrastinators (me included on a variety of things) and I always seem to be pushing out 3 or more returns on the last days of taxes at home. Now I dont seem to have much to do other then the normal mommy things
I went to my first prenatal since my ultra sound and I did not realize it was going to be so difficult. Kept leaking tears almost the whole time so embarrassing. I think I should switch to a family doctor or an office with less pregnant women or newborns. I might adjust. I dont dislike them but they remind me of my current situation that will not have such an lovely outcome logically I know I cant avoid all people in this condition but emotionally I want to.
Some days I just want the world to stop so I dont have to reach the inevitable day of Tianna's birth. She is so alive in me and for now seems safe. I want to selfishly keep her for as long as I can. I also know that heavenly father has some other plan for her and I cant stop life or change his plan to suit my desires. I just wanted to mention the want was there. I have got to find someone who has dealt with babies with this condition like a pediatrician I know that every case is unique based on brain development but I need some input.
Wednesday, April 16, 2014
Monday, April 14, 2014
Baby very active lately
Doing ok baby Tianna is Kicking up a storm and they are all over the place so I am not sure what she is doing in there. Sometimes I wish we could see inside the tummy without all those special devices. On a brighter note my oldest went out on her first group date on the 5th she was so excited and it went well. My husband also got almost everything for his renewal of his level 2 teaching license done now to just turn it in and pay. Then he can add his sped to it Work went well today finally finished one of the update classes and did a couple returns then helped with some questions taxes can be fun!
So I have been playing music for Tianna she likes drums probably because of the vibrations. She has been kicking tons especially at night. It is so hard to grasp that something that seems so alive and normal in the womb could have a fatal diagnoses once she is born.
A dear sister in the ward came and talked to me she had lost a baby due to similar circumstances. I find it helps that I am not alone that there are others who have traveled this strange heartbreaking path and survived moving on to become very strong women. It helps me to know what they have done to help this experience to be as best as it can be getting their children involved to form a bond. I am grateful for help so I dont miss important moments and can create as many memories as we can. She mentioned that she has a keepsake box for her children with a blanket and photo for them. I have decided I like this idea and am going to look for a special box this week with each child at Michaels.
So I have been playing music for Tianna she likes drums probably because of the vibrations. She has been kicking tons especially at night. It is so hard to grasp that something that seems so alive and normal in the womb could have a fatal diagnoses once she is born.
A dear sister in the ward came and talked to me she had lost a baby due to similar circumstances. I find it helps that I am not alone that there are others who have traveled this strange heartbreaking path and survived moving on to become very strong women. It helps me to know what they have done to help this experience to be as best as it can be getting their children involved to form a bond. I am grateful for help so I dont miss important moments and can create as many memories as we can. She mentioned that she has a keepsake box for her children with a blanket and photo for them. I have decided I like this idea and am going to look for a special box this week with each child at Michaels.
Sunday, April 13, 2014
Some thoughts
The 4th of April was my husbands Mission reunion the closing song was "Till we meet again". I have never reacted to that song before but this time I starting crying right in the middle of it I was kinda embarrassed and realized you just never know how things will affect you at a later date. I am tired but that seems to be the going problem
Had a sad day dont know why just felt sad baby has been kicking good. I think I just felt guilty today I try not to but I am only human. I keep thinking there is something I need to do but cant think of it. Taxes are almost over so gosh I am going to have to much thinking time I better think of a distraction so I dont mope. On a bright note yesterday we went to the Living Planet Aquarium for Autism awareness night it was great. I was so impacted by the amount of people who showed up that autism affects their family.
Had a sad day dont know why just felt sad baby has been kicking good. I think I just felt guilty today I try not to but I am only human. I keep thinking there is something I need to do but cant think of it. Taxes are almost over so gosh I am going to have to much thinking time I better think of a distraction so I dont mope. On a bright note yesterday we went to the Living Planet Aquarium for Autism awareness night it was great. I was so impacted by the amount of people who showed up that autism affects their family.
Saturday, April 5, 2014
Second Ultra Sound and Some Burial Ideas
Second Ultra sound was April 2 this time it appears that Tianna has one nostril what that means for survival we do not know yet. The rest of her appears good other then the brain not splitting like it should and a little bit of hydrocephalus at the back of her head ( meaning water on the brain). We were saddened by this some as the more facial deformations the less likely Tianna is to survive very long in this world. Tianna Daniella has Alobar Holoprosencephaly which means her brain did not form properly and has not divided into the two hemispheres. There is no cure 50% of these babies miscarry before 20 weeks those that live beyond usually 25% are stillborn and the rest can live a few days or a few months. Alobar is the most severe form two others semi lobar and lobar have a bit better survival rates.
We decided we should stop and make some burial plans to be prepared for the worst. It was so hard to pick a little casket and realize how small a baby can look in one. The costs are going to be expensive to us. They do at least not charge fees, just for the casket, vault, and we have to buy some plots they are sold in 2's but we might as well get 3 so we can all be buried together. They Funeral home was very helpful and explained things about how different funerals work and why its always a good idea to at least have a plan even if you dont purchase things right then. They also explained that they offer a funeral insurance which I think can be a good idea that acts like a universal life insurance but is just for your funeral and anything left over would go to beneficiaries. They also explained that it is better to pay on the 13 months same as cash kinda thing so you dont end up paying double by the time your finished paying for the insurance. I came home and was sad talking to my sister in law helped we discussed some ideas for the graveside. She offered to play there so we picked some songs. Yesterday the 4th of April was my husbands Mission reunion the closing song was "Till we meet again". I have never reacted to that song before but this time I starting crying right in the middle of it I was kinda embarrassed and realized you just never know how things will affect you at a later date.
I guess I should post how I am doing well I am healthy and the Perinatologist expects me to progress just like my other babies. So physically I am ok other then tired. Emotionally I am not so great I sometimes find myself wishing it is some other way. I am sad I try hard not to think on what the outcome threatens to be and focus on Tianna moving in me. The hard part is how to get the most I can out of the next 4 months without crying all the time. I try to share experiences with the other children like things that make her kick. All I can do is take it one day at a time and hand this anguish all up to God.
We decided we should stop and make some burial plans to be prepared for the worst. It was so hard to pick a little casket and realize how small a baby can look in one. The costs are going to be expensive to us. They do at least not charge fees, just for the casket, vault, and we have to buy some plots they are sold in 2's but we might as well get 3 so we can all be buried together. They Funeral home was very helpful and explained things about how different funerals work and why its always a good idea to at least have a plan even if you dont purchase things right then. They also explained that they offer a funeral insurance which I think can be a good idea that acts like a universal life insurance but is just for your funeral and anything left over would go to beneficiaries. They also explained that it is better to pay on the 13 months same as cash kinda thing so you dont end up paying double by the time your finished paying for the insurance. I came home and was sad talking to my sister in law helped we discussed some ideas for the graveside. She offered to play there so we picked some songs. Yesterday the 4th of April was my husbands Mission reunion the closing song was "Till we meet again". I have never reacted to that song before but this time I starting crying right in the middle of it I was kinda embarrassed and realized you just never know how things will affect you at a later date.
I guess I should post how I am doing well I am healthy and the Perinatologist expects me to progress just like my other babies. So physically I am ok other then tired. Emotionally I am not so great I sometimes find myself wishing it is some other way. I am sad I try hard not to think on what the outcome threatens to be and focus on Tianna moving in me. The hard part is how to get the most I can out of the next 4 months without crying all the time. I try to share experiences with the other children like things that make her kick. All I can do is take it one day at a time and hand this anguish all up to God.
Sunday, March 30, 2014
Telling others
Well after you get over the shock a bit and the grief you get to figure out how to tell others especially extended family you dont want them to be blindsided. Also you have to consider the kids your kids ages the cousins as your kids will need someone to talk to other then you. We decided to write an email I could not tell them in person and get it out. We decided to tell them within the first week after we had told our children. I happen to have two sister in laws and a nephew all due with there first babies within a month of mine. This will make it a bit difficult as they will have baby showers in the coming months and I will have a constant reminder of what my child would be like after she passes. I know I can do this because I am strong enough to face this challenge with heavenly fathers help, to much is at stake to fail this test. In the email I told them the condition how we were doing and that we did not want to be excluded because it might get uncomfortable. We might cry a bit but just ignore the tears and keep going we will be ok. We did not want the family to have to walk around on eggshells around us when they should be enjoying their first child experience. About half responded to our email right away the others did not know how to respond or what to say. They still love us they just needed more process time most have responded by now most in person to let us know they are there for us and feel our grief but did not know what to say.
I also think you need support you have got to have someone to turn to when the day threatens to overwhelm you with grief or sadness. For some this is a religious leader for others its a good friend and even if they dont truly understand at least they can listen. Also what your kids carefully they dont always want to share how difficult a time they are having especially the teens. In our state we have a wonderful program called angel watch they provide various services for grieving families of children who pass away under age 1. We are set up for our first appointment so they can help us get some counseling and decide what we want for Tianna's birth. We also have our followup ultra sound this week and have made a huge list of questions we would like answered we just feel like the doctors tend to just give you doom and gloom instead of educating you on all the possibilities. We would like a MRI to see better what the brain is doing as it is very difficult to tell on ultra sounds. We need to know what areas are affected since her body looks fine. What it means since the test for trisomy 13 and 18 came back negative does this change her chances? What interventions do we consider? how many heroic measures do we do? Where do you draw the line between suffering and life?
I also think you need support you have got to have someone to turn to when the day threatens to overwhelm you with grief or sadness. For some this is a religious leader for others its a good friend and even if they dont truly understand at least they can listen. Also what your kids carefully they dont always want to share how difficult a time they are having especially the teens. In our state we have a wonderful program called angel watch they provide various services for grieving families of children who pass away under age 1. We are set up for our first appointment so they can help us get some counseling and decide what we want for Tianna's birth. We also have our followup ultra sound this week and have made a huge list of questions we would like answered we just feel like the doctors tend to just give you doom and gloom instead of educating you on all the possibilities. We would like a MRI to see better what the brain is doing as it is very difficult to tell on ultra sounds. We need to know what areas are affected since her body looks fine. What it means since the test for trisomy 13 and 18 came back negative does this change her chances? What interventions do we consider? how many heroic measures do we do? Where do you draw the line between suffering and life?
Friday, March 28, 2014
Night Terrors
So I have this weird thing that happens to me when I am pregnant. I wake up about 50% of the time in the middle of the night freezing and shivering uncontrollably. I think it seriously might be sleep apnea and it seems to get worse the bigger I get then goes away after I give birth. I have been told I have sleep apnea when I get sedation dentistry. The thing that worries me is if I am keeping my unborn Tianna alive and she cant function if I dont will I kill her with these episodes? I had a double episode last night which is unusual for me and stressed till about 2pm today when I finally felt Tianna move I was starting to freak out that she was gone.
On another note my oldest is 16 has been for two whole days and she is already at a dance. WOW, I warned her that the boys would crawl out of the woodwork to take her out the minute she turned 16 but she thought I was nuts. I hope she has fun though she needs a bit of cheer right now since she is a bit upset about baby Tianna. My second seems to have buried herself in books and movies to cope. My third is fine she is still sad but coping so much better. My fourth is meltdown city she freaks out about everything I dont think she is doing well but not sure how to reach her. I tried to tell my 5 year old son the other day about Tianna but he did not get it and still thinks he will just play with her when she comes out. It made me sad that I knew this was not likely to happen but cant get him to understand.
On another note my oldest is 16 has been for two whole days and she is already at a dance. WOW, I warned her that the boys would crawl out of the woodwork to take her out the minute she turned 16 but she thought I was nuts. I hope she has fun though she needs a bit of cheer right now since she is a bit upset about baby Tianna. My second seems to have buried herself in books and movies to cope. My third is fine she is still sad but coping so much better. My fourth is meltdown city she freaks out about everything I dont think she is doing well but not sure how to reach her. I tried to tell my 5 year old son the other day about Tianna but he did not get it and still thinks he will just play with her when she comes out. It made me sad that I knew this was not likely to happen but cant get him to understand.
Tuesday, March 25, 2014
How do you live with it?
Well its been a few days since we found out about our daughter having Alobar Holoprosencephaly, who we have decided to name Tianna Daniella. My husband is so doting he knows this is hard for him but especially hard for me. He has not really tried to feel our previous babies move this early before but he sure tries with this one. I really think she knows he is there as she kicks like mad when he starts talking by me. However she does not kick as much when he holds my belly.
I have so many questions about this condition and have been researching it seems like its hard to know which children will live for what amount of time. There does not seem to be any rhyme or reason to it. I have had more moments of peace then freaking out as the days wear on but I also have times of deep sadness. I think I will have some panic moments as I get closer to birth but hope the peace that can be there is what helps me through. I have pondered things I might want for our birth but I have not come to terms with anything specifically as I have to many unanswered questions. I have decided to try to get a fetal MRI I need more input.
We have discussed burial ideas but this also is so difficult to come to terms with I dont want to be planing a funeral now. However I really dont think I can do it after Tianna is born if she lives but a short while. I feel the need to be prepared for more then one outcome to help limit the fall out if the outcome is poor. It does seem to be morbid to have to be considering my own burial thoughts at my young age. We feel we would like to be buried where Tianna is so we now have the need to buy plots for us.
I have been trying to have hope this is very difficult when so much is unknown. My husband and I have gained some more hope as we joined a facebook group for kids with our condition, HPEandfamiliesforhope there are many kids with insurmountable odds that have lived for many months or years. However there are many that live but a short time as well.
I have so many questions about this condition and have been researching it seems like its hard to know which children will live for what amount of time. There does not seem to be any rhyme or reason to it. I have had more moments of peace then freaking out as the days wear on but I also have times of deep sadness. I think I will have some panic moments as I get closer to birth but hope the peace that can be there is what helps me through. I have pondered things I might want for our birth but I have not come to terms with anything specifically as I have to many unanswered questions. I have decided to try to get a fetal MRI I need more input.
We have discussed burial ideas but this also is so difficult to come to terms with I dont want to be planing a funeral now. However I really dont think I can do it after Tianna is born if she lives but a short while. I feel the need to be prepared for more then one outcome to help limit the fall out if the outcome is poor. It does seem to be morbid to have to be considering my own burial thoughts at my young age. We feel we would like to be buried where Tianna is so we now have the need to buy plots for us.
I have been trying to have hope this is very difficult when so much is unknown. My husband and I have gained some more hope as we joined a facebook group for kids with our condition, HPEandfamiliesforhope there are many kids with insurmountable odds that have lived for many months or years. However there are many that live but a short time as well.
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