How do you cope?

August 8th

Today was my due date and kinda made me mopey I mean usually I am still pregnant which depresses me. I still feel at peace she is where she ought to be but you still feel that emptyness.

August 10th

Well I have discovered that having a small war inside yourself is not pleasant. I feel a big jumbled mess spiritually I know Tianna is safe and happy I have peace about this. Mentally, emotionally and physically I want my baby I want/ need to be caring for her. The loss is on so many levels I can't process how to deal with it. Human nature is to avoid painful things so my survival instincts are to box all that reminds me of her away. Then you feel like a horrible mother for trying to forget such an important person and event in your life. There has to be a better way maybe it takes time. If I can get past these mother instincts that make reminders so painful maybe I can then dwell on the joy Tianna brought me in the short time she was here. I did have to take Tiannas picture off my wallpaper on my phone. It is amazing how much a person looks at their phone and I can't make it through the day crying every time I look at my phone.

I did come to the realization that God sent Tianna back to breath so I would not have to live with the guilt of pulling the plug. I don't have to have any thoughts of I ended her life for which I am grateful. It was still hard to watch her go and you replay it at times.

had an appt with my doctor Last week stomach measuring a bit small probably cause head is a bit small I had gained some weight so mostly I appear normal hahaha. Tianna was moving so much he could only get the heartbeat for a second or two but decided she was ok as she was moving. She still does not like the doppler or ultra sound machine always seems to be saying leave me be 

well I am having more braxton hicks almost every time I get up or down I must be having them at night cause I wake up with my stomach sore at the top and bottom mostly. Tianna also appears to have dropped into my pelvis my heartburn is a rare thing again. I am 33 weeks if anyone is keeping track  I am having more panic attacks I am sure this is just because I am at war I dont want the inevitable to happen. However I know it needs to it is a bit of a quandary. I dont feel ready for this experience at all and frankly the timing sucks to much to do around my due date the kids will be starting school, Aarons new job starts around then too. I just dont know how it will all work out. I am working on the faith aspect of this whole journey it will work out how it works not much I can do but pray that we all survive the aftermath and take away what we need to from this journey.

We took our kids to a carnival Saturday it was fun we have been working to have more family outings this summer to help with coping. We make several of them as taking Tianna out to do this and that. It can get to be a challenge with all the autism we have frequent meltdowns but this is more important then what some passer by might think of my childrens behaviors. The kids do seem to be having fun so that is what matters making some memories.

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.

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.

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?

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.

Alobar Holoprosencephaly

Well I will soon be the mommy of 7 I am due in August. This was a planned pregnancy we knew there was another. Now let me tell you that after having 6 I still had no idea that your life could change in a moment from one ultra sound. I went to my 20 week ultra sound on March 18th and everything looked good right on track till we hit the head. It measured only 17.5 weeks and the ultra sound tech said I need to get a doctors opinion. After she left I felt all will be as it should be this does not always mean how we want but I felt a bit of peace. He comes in and said that the brain looked abnormal but he did not have the experience to know what it meant and I would need to see a specialist. How absolutely terrifying and heartbreaking. I had no idea all the things that can go wrong I searched the internet and the results did not help. I was thinking it might be downs I could work with that. So the midwife said she would find me someone to see me this week but no one in the valley was available till April 2nd so she searched in salt lake and found someone to take me the next day.
So I messaged my husband and asked him to get the next day off to go with me as I could not face this alone. He managed it thank goodness so after 24 hours of pure torture we went to see the specialist the ultra sound went about the same and when the doctor came in he went over the results. The result was worse my baby girl has Alobar Holoprosendephaly a rare condition where the brain does not form properly and is the most severe of HPE. Her eyes do appear close set and the nose appears to have 2 nostrils but it might be formed weird. Her mouth and lips are fine. Her body and organs all appear fine and are on track. It did seem her brain was missing about a third by the right eye we were in such shock he did not really go over the specifics.
I asked what our options were and there are not many I could terminate by getting dilated and giving birth, I could do the D&E where they essentially cut the baby up and suck it out. Or I could attempt to go to term and give birth. We opted for going to term and giving birth due to religious beliefs. This is still a hard thing to come to terms with I will have people who ask me how the baby is so emotionally this is going to be so trying.  The genetic counselor then talked to us we could do Amniocentesis which would tell us what chromosome it was attached to but it does not appear to be a hereditary thing so this probably would not be useful. They could do an autopsy after baby dies but would have to cremate as they make a mess when they do little babies. They could do a blood test for 2 chromosomes which we decided to do but is unlikely. She also put me in touch with a Utah Group called Angel Watch. The group coordinator Carolyn got in touch with me already and explained the many things they offer a family that has been given a fatal diagnoses no matter if you terminate or carry to term.
I had panic attacks for 2 days I still have uncontrollable weeping. I am sad, depressed a bit, angry, and then at times I am at peace.  We came home and had to tell our parents this was such a hard development to share with them.
The next thing was trying to tell the children how do you share something like this and help children on the spectrum really understand. We decided to tell the oldest 16 when we picked her up from her first performance as she tends to mope. However she has to hold it together during a performance so it gives her subconscious time to mull it over so she can deal with it. This seems to have worked well other then a loss of appetite she seems ok. Our next 3 ages 13, 11, and 8 we told the next day after finding some books to help us. The 13 year old internalizes like mad but we think she gets it our 11 year old is neuro typical and cried alot but has come to terms. Our 8 year old is a little bit more difficult I dont think she really gets it and I dont know what further to do to help her. Our son age 5 and our 2 year old girl we have not told I really have no idea how to get the point accross to him, he is our most autistic child and is frequently in his own world. We feel that the 2 year old is not going to get it at this point but I am praying for some inspiration to help them both.