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.

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.

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.

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.

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