a many day update

30 July
Well inducing sucks! Been here since 4 pm yesterday had cytotec got me to a 2 had foli catheter got me to almost 3 have epidural miserable now on pit taking forever starting to think should have csection.

Broke water about 1.5 hours ago then pit only at 4.5 have not dilated this slow since first child. So frustrated!

Tianna is here she is stable they did vent her she has big eyes and and a single nostril that does not appear to work.

I tried to leave this world today hemorraged lost most of my blood and plasma. Thank god for Dr Scott Peterson and the uvrmc staff. Along with my doula Megan Keller and her assistant Angie. I am very tired now thank you for all your prayers I feel they made a strong difference in mine and Tiannas outcome. She is still stable and a more normal color.

31 July

We(Aaron and I ) got to hold our precious Tianna a few moments ago we are so grateful for any time we get with this great big special spirit. Her little heart is not cramping enough so they started some med for that. She does have diabetes insiphadous but they are regulating that. She is still vented they want to keep her stable till we are ready to let her go.

1 Aug 

We had a family photo session with our Tianna today it was good. Tianna held up pretty well we are so grateful for the nicu team at uvrmc helping us acheive this with a vent. It was a great blessing. We have after much heart breaking decision making decided to un vent Tianna on Monday and let her return to heavenly father in her own time. She really is just waiting on us she has very minimal brain function. She does not see or hear she is still precious and beautiful. We don't believe she will live but a few moments off the vent and are exceptionally grateful for the time we have had.

 

2 Aug

Well sitting her wit my adorable daughter they took her off the heart contracting meds yesterday she seems to be doing ok without it but her heart rate is sitting at a consistent low from 101-109. She opened her eyes earlier and they are lovely. This picture is from when she was getting her hands and feet cast I get the feeling she did not like it much.

she loves to keep her head the other way so we need to keep turning her to the left. She opened her eyes really wide for me today. She also loves her hands in and by her mouth just like in all her ultra sound pictures 

Some special daddy time she even has been opened her eyes

3 Aug

Well we sure tried to cram a lifetime of memories into a day and a total 5 days. I am not ready for the day tomorrow but we will try to get the best experience we can. My princess had lots of visitors it was a busy day.

4 Aug

Well getting ready to remove vent what a trying time this has been in so many ways. At the same time it has been wonderful such a precious angel. It is difficult to let go we know she has a greater mission then just being with us. We have appreciated everyone's prayers and kind thoughts.

Tianna has gone home she went home to heaven at 6:15 pm after taking vent out about 3:40 pm. She passed at 4:03 pm. Then decided she wanted to let us know she really wanted to stay so at 4:30 pm she started to mouth breathe with heart rate 120 but very gaspy she did this for about 40 minutes then she started to quit breathing 5:15pm. She is such a powerful soul we love her and this is such a powerful experience we have been so blessed.

5 Aug

I have been kinda distressed today feeling like something is missing like I should be doing something. We went to the funeral home today to make final arrangements it was tough. We got to hold our baby again hard to believe she is gone. Such an angel I did not post yesterday but the second time she left it was to my oldest and I singing to her. I think we all needed that experience it was very healing. The following picture was taken shortly after she started to mouth breath we were so blessed to get very alive pictures of our baby she did have jaundice if you wonder about her coloring.

Some catch up posts

7-11-14
Well in a bit of a shock today went in for my 36 week ultra sound and baby Tianna is not really growing, my amniotic fluid is a bit high so she is not processing it as well as she was. Her heart rate is around 108 bpm which is highly worrisome. The Nicu says they would rather have a good heart rate and worry about lungs then other way around. They then asked us what our goals were and we have decided we would like to have her born alive if possible just to get to see her move and be here. They think that if her heart rate continues to drop she will not make it out of me alive. I feel stuck between a rock and a hard place. I thought I would have 4 more weeks I feel totally not ready but worry if I wait to long I will loose her in the womb which could happen anyway PRAYERS greatly appreciated!!

7-13-14
Well what an emotional weekend. Baby Tianna is doing ok heart rate sitting about 112 I am so grateful to own a fetal monitor so I can not stress about it. Thanks Kim and Michael! We got those prenatal pictures done that was a special experience and will be treasured. We have agreed that We would like Tianna to be born alive if possible we will see what our Regular baby doctor thinks on Monday. I am not happy to have to be induced but that is the way the cookie crumbles. It is a life adjustment to think you have 4 weeks to less then one week all the things I thought I had time to accomplish now get to be crammed in. We laid out some basic plans for the graveside service yesterday just in case I have washed most of the baby things I have that we might need. 

7-14-14
Well it is scheduled I go in to soften my cervix Tuesday Night 6pm at UVRMC then they should start pit Wednesday morning. I am not ready this has all been a mess from the get go I am not used to being induced My babies are all 6 days over except Sav who was 12 days over. I dont like this at all at the same time what do you do? I want to meet my baby alive if possible and they tell me this is the best way as she is not growing and the heart rate issue. I will have to grin and bare it. I pray it works out the way it should and we get to spend some time with her. What a experience this has been. I hope never to repeat it.

7-16-14
Well it just goes to show it can be difficult to force nature. Induction failed we try again Monday.

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.

A bad day

Well its already been one of those days. Sigh! My baby puked first thing this morning. Then My son did not want to go to school so my oldest had to drag him kicking and screaming into school the looks from the other parents where great. The teacher promptly sent him to the principals office who then sent him with the counselor. Then baby puked again all over herself and the car seat. Then the stupid van driver window would not go up so I got to drive 30 minutes home with the window down on the freeway. What a nice hair doo. Then had to get baby cleaned up my back is killing me.

It was my youngest birthday last week she is now 3 WOW where does time go? I went to another doctor and he prescribed me Methylprosinone pack it seems to be helping some but he still did not want me to sit. I talked to him about my baby as he is a long time friend of the family. He said I have to decide how much intervention I want but to give Tianna the best chance for survival she should be born in a hospital. If I just want comfort care I can go ahead and home birth (he does think I am nuts to birth at home but he also knows its a thing he called it like a religion :)) I posted in my holoprosencephaly group trying to figure out what others have done. I believe he is probably right I just dont know how I am going to convince myself to do it. So many things I need I cant get at a hospital I dont want to end up with so many complications because doctors only show up the last 10 minutes. I so need my water I just dont know how to get around it. Well at least I have a bit of time to try to figure something out.

Pondering Tianna's Condition and a house of kids on Spectrum

Well Tianna still seems to be doing well she is a very strong kicker. She also has been getting hickups lately I wonder what she thinks about when she gets them. I wonder if they scare her. I wonder if because she is special God lets her see inside the womb and out. I wish she would just come get in my brain and let me know what choices I should make for her. I have 6 weeks till my next ultra sound and I wonder daily if they will find something else wrong with her or if she will even live that long. Wondering so many things daily can give you heart burn lol well its probably pregnancy but still. I have wondered after reading many posts in HoPE for families why some with Tiannas condition live even though they seem worse then she is. I decided its like wondering why some infants die of SIDS and some dont. There is just not a rhyme or reason for it.
As for my back it is a bit better but only if I dont do things I should be doing. Bending is not so good and sitting for long periods like longer then 10 min makes it ache something fierce. I worry that I will make it worse if I am not careful. However I still get up and move about the house but ohh what a pain it is to not pick things up. With 5 kids on the spectrum my house is a disaster they just are not great at cleaning up after themselves. Even if they do "clean" it is still not really clean at least it is better. I really want to mop the kitchen and organize My sons toys that have been scattered all over the living room for weeks. However I dont think that will happen anytime soon.

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.

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?

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.