Pine wood derby and braxton hicks

Well I woke up this morning and my tummy was super hard all over decided I would check heart beat. Tianna seemed ok I just got worried since I had not felt her move since I got up. Well the water heater was getting repaired today and you really dont realize how much a pregnant woman goes potty till she cant. 
My husband is an wonderful man they had a Daddy Daughter date in activity days and did pine wood derbies. My husband is not a fan of making pine wood derbies but he went along with it and helped our 3rd and 4th daughters with the making of theirs. My 3rd daughter actually took 2nd place. I found it one of those bitter sweet things as it brought to mind that I have a Angel who wont get to experience such things.

Families of HoPE and Dentistry in Autism

My Package came from Families for HoPE it had a blanket and some indepth information on Holoprosencephaly. I found it helpful I wish there was a master list of various physicians who have dealt with babies with Tianna's Condition in the state even would be nice. Currently I am discovering most have never had contact with this condition. It is very frustrating to say the least. We had a dental appointment for the kids this morning just cleanings.
My son is always the most difficult his autism hits full gear even trying to get the xrays. We struggled a bit at first then I told him I would buy him a lego if he was good I was desperate and he was biting. I know some would think I was just giving in but sometimes a little bribery can save a whole lot of heartache. The rest of his appointment was the best we have ever had he did not even fight the dentist for his exam and his cleaning went so well. He tends to fixate on things and his current is legos. I rarely use bribery but in this case I am glad I tried it. Unfortunately he does have a long memory so come next time he will want to be bribed again sigh! At least it is only every 6 months.
My kids had a run fund raiser for the school they attend today I was very surprised to find that my 6th grader ran 54 laps and my 2nd and kinder ran 45 laps each maybe they will fall asleep easily tonight  

An Easter with an Angel coming

Easter was hard this year I have never considered celebrating to include the baby in my tummy before. After thinking on it I decided that I believe the spirit resides in the body even in the womb. As such since Tianna might not be with us for any others we decided to get her a basket and a bunny. A dear friend of mine told me that her children find great comfort from having a stuffed animal to cuddle with when they miss their sister. I thought this was a good a time as any to get an animal that would mean something to my other children when they get sad. I am glad I have a religion to believe in that helps me realize the greater picture. I got released from nursery today they asked how I felt about it, I felt this might be better for me as I struggle when around so many other children. My pregnancy is making it difficult for me to be much help physically. I would like to do something but I am not sure where I could help and not have to deal with any questions about Tianna. My 3 year old is talking up a storm she is a huge chatter box reminds me of my 16 year old more everyday. 

I was sitting outside to day to get warm and realized that the sun was hitting my tummy. I then wondered if Tianna could sense the light she started kicking so I tend to thing she could sense a change. I then realized how much I am aware of the beautiful things nature brings us. I usually notice some things but I feel I have been noticing more since getting Tiannas diagnoses . I remember spending tons of time in nature as a young girl I loved the hills around my house I used to watch ants for hours. I loved to watch water skitters on the provo river. I liked the feel of wet sand when I would build car tunnels and rivers with my brothers. I loved the swinging motion of swings and swing for quite some time. I loved to look at the veins in different leaves while walking. I love sunsets and when I would get up sunrises. Rainbows were and are still magical I love prisms that make these and would explore them in different settings. Butterflies are probably still my most favorite I love their delicateness and how they come out of self made cocoons. As I wander through these days till Tianna comes I try to share these with her as she might not get to experience them outside the womb. I wonder if she will be here long enough to experience different temperatures or a lovely summer day. I hope she will be able to at least experience taking a breath and the amazing energy it can create in your body. I hope she will also get to feel her mothers and fathers arms around her in a loving embrace before she goes back to help her father in heaven.

Adventures of JR prom and Aspergers

So after spending the last two days chasing around to get the final touches for my oldest prom outfit. I have decided I need to plan ahead for future events like this. I totally forgot since I was in high school all that is involved. I did not remember that she would need a boutonniere till the last minute so thanks to youtube I had a crash course in boutonniere making lol. It was interesting to say the least and wore me out with the prep for easter as well. I dont think it looked to bad for my first ever.

I did learn that children on the spectrum even Aspergirls just have some time management issues that they probably will not outgrow very easily and you should never assume. I mistakingly assumed she had actually tried on the dress to see if it fit so bless her aunt who was already doing her hair for fixing her dress to. She did have alot of fun at least so all the rush was worth it. 

Another appointment Some insights into my children on the spectrum

I went to my other midwives yesterday it was a good visit. If anyone wants to give homebirth a go or just some excellent prenatal care or birthing classes. I recommend them http://birthingyourway.com/ They have been a great support during this difficult time. I like my other midwives as well they deliver in the hospital they are athttps://www.facebook.com/pages/Central-Utah-Clinic-Womens-Center/131126283606333 Both have listened to my concerns and help me realize this is a process and sorry the vast majority of men are not really going to get what you might be going through. So male doctors seem kinda cold during this experience.
I have gotten the keepsake boxes for almost all my children just missing the oldest and a blanket for each of them but ryan his favorite color is red so its a bit more challenging to find a soft blanket in red 
I did talk to the counselor at school today I filled out forms and she asked how much the kids knew. I went over each child and how I thought they were doing then she said something about 4 files on her way out and I realized I had not discussed if she could see my only child without an IEP. My poor Neuro typical child she so gets lost in the day with all the melt downs and tantrums I think she might be in need of a little more attention. I then hunted her down and mentioned that I had a NT child as my third she was slightly surprised as I usually dont mention her mostly because we are always dealing with the others who have IEP's. She had me fill out a form for her to see her I asked her to also see how she is dealing with being in a sibling group with all the rest on the spectrum. I love my Beth she has always been so easy even as a baby she was the only one that slept through the night. She nursed right away and is usually very pleasant. Not that she did not have some moments and cry but usually just cause she needed something ie a diaper change, burp or feeding. I just thought God had given me an super easy child as my older two could be challenging as infants. LOL My husband and I have now come to the conclusion she is probably how most babies are and should have realized our others had some struggles a bit sooner. I used to describe my others as grumpy or moody nothing seemed to appease them easily. I wonder sometimes if some of these behavior issues could not be caught sooner just from observing babies.

Tax Season over and An Appointment

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.

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.

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.

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.