Another month gone

Oct 10th

I am still here the after effects of grief are actually stronger in the older children then the younger ones. I got my photos from NILMDTS today and they are lovely Lens Blossom Photography did an awesome job. I had a hard time wanting to sit down and look at them but made myself it was bitter sweet. I am glad I did they are something I am glad I will always have as you tend to forget some of the details. I have been sick 4 times in the 8 weeks since I delivered but seem to be on the mend. I am reminded at different times in my life that God is mindful of us especially in the way people are brought into our lives. We will be ok will life be a challenge? yes will we always grieve? yes but it will lessen then hit like a train and lessen again. I have a new favorite song it is Glorious by David Archuleta it has deep meaning for me at the moment. http://www.youtube.com/watch?v=GytW_rgr0RM

The hardest hit from this experience is my oldest she struggles with anxiety and depression already and has not rebounded very well. I wish I could figure out how to help her life is already difficult for a 16 year old this experience has not helped. I wish I knew what to say and do to help her work through and learn the special of this and not just the loss.

Tuesdays

I wish I knew why Tuesdays are so hard for me I lost Tianna on a Monday but it always hits me on a Tuesday. I wonder if that's when it hit me she was gone or perhaps I grieve cause that is the day I went in to get induced. Well whatever it is today is a hard day 3 weeks she has been gone. I don't like it! I know she is doing good things and I still want her here to cuddle and hold. It is mostly at night I miss her and first thing in the morning oh and when I leave the house all of these times I think I am forgetting someone. Interesting how much of our lives revolves around mothering. Well at least I am slowly able to do more things with out getting wiped out. Kids are adjusting to school hubby too. We just need time to get lesson plans in our kids are still clingy and interrupt us constantly more then normal. Makes it hard to get anything done mostly cause I forget where I was with every interruption and have to start over in my thought processes. Sigh!

The second Week after Loss

August 17

Eleanor Loveridge Tianna's Cousin is here born this morning she is 20 inches long and 8 lbs 15.9 oz pretty good size for a first baby and she looks like Jarom and has long hair 

August 19

well Tianna has been gone 2 weeks as of yesterday at 6:15 pm what a hard two weeks for me. I miss her like crazy and want to hold her. I have decided in the last couple days that it works for me to give thoughts to her at least first thing in the morning so I play her song and sing it and cry if I want while I pump. I figure I spend all day thinking about and looking after my other children I can spare a bit of time to think about the one that is gone.
I have determined there is a big difference in the sexes in how we grieve and from person to person. I am still a mess my husband seems to have let go and moved on. Of course he is really busy with school starting so maybe he just hides it better which is what I am more inclined to believe.
I still am trying to recover from blood loss and delivery. I read in someones blog who lost 2000 ml and had a transfusion the hospital told her it could take 6 weeks to feel normal. So I have decided to quit feeling guilty that I have not bounced back. This other lady could not even hardly walk without her husband for the first week so I am doing better there I just need to give myself more time.

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.

The funeral

August 7th, 2014
was Tiannas burial it was difficult and sad but at the same time beautiful and peaceful. It is an odd mix of emotions at the same time. We played mothers prayer while her casket was unloaded and placed by Aaron and Timothy Loveridge. Bishop Ludlow conducted Tiannas grandpa Robert Loveridge said opening prayer and Tiannas oldest sister Aubryanna sang breath of heaven. Then Tiannas father Aaron Loveridge dedicated the grave. Then Nora and Rebekka Loveridge played on violin and viola till we meet again and we released purple and blue balloons. I think this helped the kids. We got to watch them lower her into the ground and put flowers on top then they filled it with dirt. I miss her. On a side note you can get a registered death certificate before the birth has been officially registered so you can get birth certificates.

Obituary for our Angel

Tianna Daniella Loveridge

Born July 30, 2014

Died August 4, 2014

Due to Complications of Alobar Holoprosencephaly

Tianna was born at Utah Valley Regional Medical Center to Aaron N Loveridge and Dianalyn Prisbrey Loveridge. Tianna had the cutest nose and loved to be sung to by her oldest sister and her Mom. She loved to be held by daddy and mommy. Tianna is her grandparents and parents shining star that brightened our lives for a brief space of time but will impact us for a lifetime.

Tianna is survived by her parents Aaron Nephi Loveridge and Dianalyn Prisbrey Loveridge; her Sisters Aubryanna, Savannah, Bethannie, Julianna and Meagann Loveridge; her brother Ryan William Loveridge; and by her grandparents Robert LeRoy Loveridge and MaryEllen Wilcox Loveridge, Larry Max Prisbrey and Elizabeth Ann Sykora Prisbrey.

Graveside Service

August 7, 2014

12pm

Lehi Cemetery

1100 N 400 E

Lehi, Utah, 84043

In lieu of flowers, Memorials may be sent to:

Aaron Loveridge

855 E 200 S

Orem, Utah 84097

"A Mother's Prayer"

(Celine Dion)

I pray you'll be my eyes

And watch her where she goes

And help her to be wise

Help me to let go

Every mother's prayer

Every child knows

Lead her to a place

Guide her with your grace

To a place where she'll be safe

I pray she finds your light

And holds it in her heart

As darkness falls each night

Remind her where you are

Every mother's prayer

Every child knows

Need to find a place

Guide her to a place

Give her faith so she'll be safe

Lead her to a place

Guide her with your grace

To a place where she'll be safe

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.

As I prepare to give birth

You know Even after you have decided something it does not make it any easier. It is hard to contemplate that in just 2-3 days I will give birth to this angel. I know if I can not talk myself into this and work toward being comfortable my labor might be an not great thing. Still it is a struggle to let go of something that means so much and you have carried for 9 months. With my other children you expect them to live and grow up although there are no guarantees.
With an angel baby you know they wont have long on this earth if they even make it through labor. Although I do find you wonder some of the same things but with more sadness. What would she look like at various ages? I wonder what her favorite thing about nature would have been? What her favorite color will be? What if her brain had been normal would she have done with her life? Which of her siblings would she be closest to? I know these are all trivial things as really she is doing what is most important. I know she is doing and will continue doing great things on the other side. Still I will always wonder.....

I know that our religion believes we will get to raise Angels like Tianna later but I really dont see a need for this as she will already be beyond the need for that. I guess its possible they need a fully grown adult body for some reason but would imagine it could just be changed in the twinkle of an eye. Still I guess this is just another of those things I wont really understand till I get there.
I am working daily to prepare myself mentally, emotionally and physically to give birth I hope I can get there in time for my induction on Tuesday Evening. It is a challenge to get yourself ready let alone have enough left over to do final prep for your kids and husband.

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.

A Delay

After some careful thought prayer etc we decided not to induce again yesterday. We are still trying to get a feel for when this may or may not occur. we dont feel it will happen this week it is a trial to decide the fine line of risking me and Tianna. We did a non stress test yesterday and Tiannas heart is doing ok she is still oxygenating this does not give us any guarantees. For now she is doing well they would like me to see the doctor twice a week now to help ensure I do not get in trouble health wise. Our oldest two are at camp this week and we wanted them to have a good time. Prayers gratefully accepted.

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.

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.

Maybe a hospital birth and some good news

well I set up an appointment with the midwives on 53rd I hope they can deliver Tianna as then she will have access to a NICU. I am very nervous my only hospital birth was my oldest and I did not really care for it. However we still feel we have to give Tianna every opportunity to live a bit. Back is feeling a bit better but I am sure its just the drugs we shall see after tomorrow how much pain I end up in still. I hope and pray I can function once again and it was just a flare up. Tianna is still kicking away her heart rate sits at 135 beats usually. I am making more lists of questions for midwives and perinatologists. Along with the ones I hope to ask the NICU staff.
My husband got his offical contract for teaching 5th grade at spectrum next year he is very excited. The only issue with be based on when Tianna comes she is due during his Mandatory training. They said they would work something out with him they are very understanding. I let my oldest drive her sister to 7th grade orientation all by herself it was a bit scary but she did very well so glad she can help.

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