Some helps and school starting

http://www.amazon.com/gp/product/B0079UVRU6?ie=UTF8&at=aw-iphone-pc-us-20&force-full-site=1&ref_=aw_bottom_links a good link for help with grieving

I got to meet the family I whose son I am donating breast milk to he is the cutest little guy. The family is very nice I really like them the mother is a sweet lady who has had child loss. We get each others grief. As I am on this new chapter in my life I find it odd that things like grief can help you form bonds with others that you would not have considered in your old you life. 
I am changing sometimes in odd ways. I am currently oddly attached to blankets. I have one they gave me at the hospital that never touched my baby but it is a nice size and I use it when sitting in the recliner and have used it since I came home. I did not realize I was so attached to it till it went missing two days ago I was a bit worried the first day. The second I was almost frantic to find it I thought one of the kids had used it for school. That second night I dreamed about the blanket for heavens sake so this morning I went on a massive hunt I knew I had to have it. I did find it and felt oddly better still I do find this need oddly disturbing.
I held my new niece today for the first time she was born 2 weeks and 3 days after my Tianna. I thought it would upset me to hold her so was a bit nervous. It did not really upset me it did however make me long to hold Tianna and set off that need that I am not doing something I should be again. This need does hit me at other times it is not bad just strange. I guess I will probably always have that but hopefully it will lessen a bit. Still at least I know I can hold babies and not want to steal them hahaha(well no more then usual who does not love babies?)

I went to see my Tiannas grave for the first time Tuesday after horse lessons I had my son, my second daughter and my youngest with me. I tried to explain where Tianna was but my youngest did not get it she wanted me to get Tianna out of the ground it made me want to cry she was so upset. 

I forgot to mention school started for my husband and son. My daughters have been in school for two weeks already and my oldest and third girls have tried out to be in a play. The girls are doing good other then my oldest was in seminary and they showed a film which would have been ok except at the end they had a family gathered around a baby/child grave. Set her on panic mode the rest of the day. My husband is in a brand new Charter school teaching 5th grade the school specializes in Autism spectrum students. Needless to say the first week has been interesting but he loves it. My son does not like school anymore now then he did at the end of last year SIGH! We are hoping he adjusts a bit more since the school specializes in ASD. My oldest has been driving the kids and hubby to schools she is awesome. I did have massive anxiety about letting her they say its due to loosing a baby it makes you more anxious about the others. She makes quite the trip she drives daddy and her brother to one city north then drives 4 cities south picks up the sister that has been staying with my mom and takes them all to school.
I have a daughter staying with my mom as she suffers from arrhythmia where her heart speeds and slows for long periods of the day especially when she gets stressed. She only needs a little help and I found I could not do it with the baby coming and cant currently. So a good solution has been I have had one of my older 4 daughters down there to help her all summer. Currently I have one daughter staying each week they help her do her laundry, keep her company when my dad is gone, take care of dogs and make sure she eats. This has been a big relief from my worries my girls are so awesome I know this has been a challenge for them as my mom can get panicy when she is experiencing these arrhythmia. 

A day to Psych for

We had a great spiritual day a couple days ago I have realized that Tianna is ready she is just waiting for me. I have to psych myself into giving birth and letting go. This is not easy for me I am a pretty much wait and let it come person so forcing my body to give birth early worries me. After much consideration we have decided to move forward with another induction on Tuesday the 29 starting in the evening to dilate me then most likely deliver on Wednesday the 30th. I hope and pray this works out and we can enjoy some time with Tianna this also was in consideration of our other children who start school on the 13th of August we wanted to give them a bit of time to recover.

Crazy week

What a crazy week my husband and I have been typing up his 9 month lesson plan outline. We had a big family thing for the 4th with his family. My doctor is out of town and really wants me to take it easy so as not to deliver early and especially while he is not here. I have days were I am just exhausted then others where I cant sleep much. Tianna is kicking up a storm still and frequently sets off severe braxton hicks. I am getting fairly anxious about birth I have the oddest feeling about it I dont know how you can be anxious and at peace at the same time but thats what I feel. My Doctor finally talked to the Nicu as they are hard to catch they told him they would vent Tianna if she made it through labor so I am relieved. This seems to be the last piece to help me feel I have done all I can to give Tianna the best outcome possible for all variables. Now whatever happens its in Gods hands (well it always was but...) I have done all I can do I feel like I have not slacked in trying to provide any help or service Tianna might require. The only struggle left is providing for the grave sites and her coffin for when she may pass from this world back to God.

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.

An helpful appointment

Well been a bit busy my oldest 4th and son have started summer school and no its not any easier to get him to go to summer school then regular school. Tianna is still kicking away and seems to be doing fine. I switched to the family doctor to deliver at UVRMC he is a really nice doctor who takes time with you and makes you feel like a person. He had already contacted the nicu at the hospital by my appointment just 3 days after scheduling. I feel like I have done the best I can for Tianna's survival if it is so deemed to happen and have no regrets other then the lack of birthing tub  I have gotten permission to labor in water till my water breaks and then I can sit in the shower for a while so this will help. I have been swelling in my feet a bit and struggle with heart burn at night. My braxton hicks are getting stronger at night as usual. I still have my up and down moments or days but I can tell people about her condition without always bursting into tears so that is an improvement. I am getting very anxious about giving birth as I really would rather she could stay inside me safe were I can fill in for what she is lacking. However I do realize this is not very logical lol and I am sure God is probably anxious to have her do what he has planned for her till we meet again.

A disappointment

Well I still am not sure where I am delivering tried one hospital with the midwives they would have been ideal but the peri in charge does not seem to value Tianna's short life enough to commit to vent her if needed. Seems to be stuck on the diagnosis that they dont survive and the vast majority dont but that does not mean we dont provide basic medical assistance to them does it? Its not like I am asking to vent her for the next 7 years just to torture her or something. I just want venting available if her single nostril is blind as babies are nose breathers and need to be able to breathe. After they evaluate her and decide she should be able to breathe on her own then we can unvent her I am asking what a couple days? or if she does indeed have a blind nasal or compromised airways we can trach her and then see if she breathes on her own. All this will only happen if she makes it through labor anyway if she is strong enough to fight through that she ought to be given the chance to live for however long god wants her here.

My son and an better ultra sound appointment

Well my son had a bad day at school yesterday he was way out of control he was poking kids tripping them etc. Today was my grandma's 90th birthday it was good nice to see some family and my sister Sharyl. 
Had another ultra sound today saw Julie A. Gainer, DO at UVRMC she is a really nice lady explained things very well gave me options and some things I could expect. Found out the NICU could do several things in the room for Tianna so she could be with us as much as possible. I really liked her Ultrasound technician too she was very well trained and so pleasant. Tianna seems to be processing amniotic fluid for now, kidneys, bladder and stomach are working. Heart is good so that is a good thing. She kicks up a storm and has her hands in her face alot. Her head had not enlarged due to water on the brain yet. I feel a lot less stressed.

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.

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.

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.