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?

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.