Pray for Sadie Mae

Sadie is having tubes put in her ears May 13, next Thursday at Primary Children's,
and I'm awaiting scheduling at Primary's to call me with a date for open heart surgery
that needs to be done in the next 2-3 months due to a newly developed condition,
in addition to her pulmonary hypertension and leak. I don't have a surgery time for Thursday yet, so I don't know if I"ll head to SLC Wednesday or not, but they will keep her overnight due to her heart.

The reasoning for doing the ear tubes first is that she has had so many infections since her others fell out in December that she is immune to nearly all antibiotics, and still has a hole in the left ear, the smallest one, so if we did heart surgery
right away it would be labeled a "dirty surgery" and antibiotics they load her with wouldn't do any good to ward off endocarditis or other life threatening infections from surgery.

On her routine yearly followup ECG they found a subaortic membrane with a pressure of
over 60, with high normal being 20. This has never been seen before on any of her studies and is congenital and can and may have damaged her valve, which we won't know until she is in surgery. There is the possibility this will regrow and will need removed with more open heart surgery in the future. He took her off her bp medicine for her pulmonary hypertensionfor now as it isn't doing any good because of this other problem...

What the cardiologist told me is very concerning is that this has never been seen before, that it showed up suddenly and large, and she is at risk for heart attack, etc., You can actually see and feel the thrill in her throat where the pressure of the blood is pushing through this aorta. He then asks me if I'm going to be alright.
Well I thought I was until he asked me.

Both this problem and her pulmonary hypertension affect her pulmonary function as well.

You'd never know her heart was in such fragile condition as she runs nonstop and is
into everything as of late. She is saying more and more words, carries her stool around with her to do "dishes" for me and clear cupboards. I can't believe she is turning 4this month. She is still very much a 2-year-old.

Life is so fragile. Please handle it with prayer. Please remember our Sadie Mae in your prayers.I'm far from ready for her mission to be over here on Earth. I've always feared that God would take her back home once I got my life in order and Temple ready again, and now that fear could very much be a reality.

Life was looking so promising for a short while there and I finally got us a home, and now not only Sadie's health, but the one person, next to God, I need right now, has turned his back on me.

I'll get through this. I'm strong... (like that makes it all better... it's not..) Being strong does NOT mean you don't need someone to hold your hand.

Our Visit To Jessica's

This would be after we got home on Monday, April 26, Sadie decides she wants to dress herself, and she's gooood. lol



My Tulips bloomed Pink, Imagine that! I knew this was the home for me!!



We took Baylee Sadie's crib and picked up Sadie's new bed and put it up in her room. She loves it!!!






Sadie in the Cemetery. We drove to Honeyville from Eagle Mountain to visit my mom's grave on Sunday. It was my second time back since she passed away last May. The tears flowed all day. I got the hate e-mail from the boyfriend ex upon my return to Eagle Mountain that night, and then the news of Sadie's heart condition and upcoming open heart surgery the next day. I've been a wreck since. Too much to take in, mourning mom with the visit to the cemetery, learning my boyfriend has dumped me through his ex-wife and that she is coming back to him, and Sadie needs unexpected open heart surgery again for a whole new problem. When it rains.. it shits!!!




Me & Baylee Ann at the playground.



Baylee Ann posing for an Anne Geddes photo shoot..lol Dang she's cute.



Braxton & Sadie Mae having a blast. They played so well together. Both will be having open heart surgery this year. They have more of a bond than just Aunt and Nephew...



Braxton and Sadie Mae totally faking asleep. Those two together do not sleep!




Braxton and Sadie Mae in the toy box.. best part of that is.. Sadie couldn't climb out. Kept her out of trouble for a bit...lol



Beautiful Baylee Ann





This would be Me, my granddaughters, Harlyn (Jeana's girl, who is very tired) and Baylee Ann (Jessica's daughter) On Friday when Sadie and I arrived in Eagle Mountain.

Yearly Cardiology Checkup Results April 26, 2010

Sadie Mae had her yearly cardiology checkup on Monday with Primary Children's, which did not go well. They discovered a new abnormality that has never been seen before on previous exams or during her first open heart surgery. She has suddenly developed a subaortic membrane with a pressure of 60++, with high normal being 20. She needs open heart surgery again within the next 2-3 months. The big concern is that it showed up suddenly and large, and it may have damaged the ventricle. I had a feeling for a week beforehand we wouldn't have good news, so mommy is a wreck. We spent the weekend with my daughter Jessica, and Sadie's nephew and niece. Sadie and I made the long drive to honeyville to the cemetery and I cried all day Sunday with emotions of missing my mom. Sadie needs ear tubes surgically put in before heart surgery. Found out yesterday she has a hole in the left ear drum. She is resistant to most all antibiotics due to so many ear infections in the last few months, making heart surgery more risky (and what they would call dirty surgery) until tubes are in. I'm a wreck... behind on work, but I'll do what it takes for my Sadie Mae....

We had a good time with Baylee, Braxton and Jessica, and I have some fun pictures I'll post later. Sadie and Braxton ran nonstop... laughing. Baylee is a doll and I couldn't hold her enough. I have the best kids and grandkids a mother could want. I'm so thankful for the good relationships we have. I'm truly blessed.

Another Day in... the .. Wind

Monday...Monday... can't trust that day...

Sadie got on her new bus good. It comes an hour earlier and yet we live closer to the school. It comes for her at 7:30!!! holy cow... that means even earlier bed time.

We are settling into our home pretty good, but not without stressors. The home had a washer and dryer in it, but I don't like them and brought my own. I pulled out the washer okay and got it outside, but the dryer is a gas one and I have no clue about unhooking a dryer from a gas line. I called dad..and he told me what needed to be done, but worried about me doing it, so the dryer still sits. The fridge and dishwasher are coming tomorrow. They will install the fridge, but not the dishwasher, so there's another handyman job for Miss Priss girly girl, Julie. I bought a shovel, rake, pansies and a bleeding heart today, however, they cannot be planted because it is currently snowing and blowing out. I also have 2 roses bushes sent to me as a house warming gift by a dear friend that I need to plant, and I need to be out in the dirt to relieve some stress.

However, this is Sadie's blog and I need to save my whining and such for my own personal blog. However, my stress has affected her. I'm so worried she's going to grow up thinking her name is Sadie Damnit. Days go by without having a conversation with someone who can say more than hi..hello... bye bye.. see ya... Easter Sunday was rough.. Sadie had a kids meal with fries for Easter dinner and I had a baked potato and broke into tears in the midst of eating it, missing my mom's sweet n sour ham...and the memories of Easter's past with my mom.. the center of everything. The true meaning of Easter hit home hard and though I truly believe in the resurrection, there is this doubt... where is mom really? will I see her again? is she okay? I miss her so bad it hurts everywhere. I used to do my best work at night, but now by the time evening comes and after I've fed Sadie, cleaned up after Sadie, chased after Sadie.. said NO SADIE NO.. don't.. stop that.. get out of that... so many times I feel its my only vocabulary, and I've rocked her to sleep and put her down, listening for her breathing and make sure her cough isn't anything much than just phlegm and not more respiratory problems and over-worrying, and find myself weeping and wishing someone could rock me to sleep and brush back MY hair, kiss me and say ... Julie.. you are trouble, but I still love you and need you in my life....but I spend endless hours alone in front of this computer, trying to concentrate on work, and not let the lonely hours get to me. The worries of parenting are endless. The worries of parenting a child with disabilities and being a single parent carrying the all around load wears on a person, add many of lives changes, a death of loved one, searching and trying to find where we fit in... and the list goes on wears on me, and I long for someone to say.. Julie you aren't alone.. I'm herd for you... or just hold my hand.. hold me... embrace me with strong arms and feel truly loved would do wonders for my weariness. anyway... again.. This is Sadie's blog and I'll stop here. Though I love Sadie more than my own life...I need a break occassionally. I don't know how to find the balance.

Sadie's learning, in spite of her getting into so much with her exploring. She now plays with her dolls more, kissing them and tucking them in bed and role playing. Her new word is "whoa"... thank goodness it's not Sadie damnit...lol I need to stop that. I feel such guilt when I lose my patience and emotional control.

Spring is here and I'll be in my yard soon and we will have the house together, and I'll be more settled. I know I need to reset my mindset... and tell myself over and over I can do this alone, and quit trying to turn to a certain someone for things they cannot provide me with and that is love, reassurance, and a few sweet words. I need so little and yet it's too much to ask...

There's no place like home.

After three exhausting days of packing, loading the van, unloading the van, tripping over myself and over Sadie, trying to work in between moves, sore muscles, bruised body, emotional roller coasters, dropping my phone in the toilet to swearing at the Qwest rep on the phone we are finally all moved. Part of the load from last night is still in the van. I veggged and piddled around the house today, and watched the conference sessions today, and took it all in, yet being very emotional with the topics and the spirit of things. I'm truly blessed to have had the help of my realtor's son and his friend, who moved my bed, desk, washer and dryer for me. I have a very hard time asking for help, let alone accepting it, but there are just some things I can't do on my own. I moved the old washer outside by myself, but I didn't dare attempt unhooking the gas line on the dryer, so I'm stuck there.

For the most part I haven't really thought much of it being the Easter weekend. Jeni called with her busy stuff going on asking how to do layered Jell-O and such, and then realized it was the egg hunt at dad's today with family, and I caught myself crying a few times, realizing mom's gone and I'm away from family, and yet I'm the one who moved. We didn't even dye Easter eggs. Sadie doesn't realize it's a holiday and they did a little thing at preschool, but, but... well I feel bad.. but duh.. holiday's and weekends are just that way. I try. Moving helped divert my mind for the most part, and when Sadie gets older and enjoys the holiday's and such it will be easier being alone. Having the house and yard will keep me busy and I'll enjoy it. I'll have Kinley and Madilyn next weekend to visit us, which I'm really looking forward too.

However, after the stress of the last few days, moving and feeling like crap when I've lost my patience with Sadie in the way, etc., I've realized my life is so unbalanced. I cherish my time with Sadie, and yet we are glued at the hip. I really need some away time, adult interaction time....I do get some alone time when Sadie's in bed early, like tonight, and yes alone time is nice, but then it's a big reminder.. I'm alone... so was conference.. the talks were uplifting.. I enjoyed every one, but it's still a pointed finger at my single life, my lack of an immediate family life past Sadie and I. Yes, holiday's could be spent some with my children and grandchildren, but.. oh crap. it's not the same. ..and I'm just whining. My life is what it is. My choices got me here. I guess writing this just lets me let it out. I'm blessed. I am. I never dreamed I'd have my own home again. I feel like I've finally come home and my life is nearly complete. It's probably as complete as it's ever going to get.

Sadie has adapted with the move so well. She loves running through the house and backyard, and she didn't like going back to the duplex for loads. I'm where I'm supposed to be and I'm learning to accept life as it is and be happy, and yet...

March 2010

Saturday morning, March 20th, Sadie woke up in the early morning hours fevering and having some struggling with respirations again, so I took her into the emergency room, to discover she had 2 raging ear infections and upper respiratory infection, still or again, who knows. It seems she is struggling to overcome the illness from last month. They gave her another Rocephin shot, Albuterol and Atrovent breathing neb treatment, and sent her home on an oral antibiotic. She seemed to perk up quickly and the fever only returned Saturday night. She seemed well enough Sunday, so we attended church, which she always enjoys. She loves the people, the singing, and the nursery.

Knowing she has an appointment in Salt Lake at Primary Children's Hospital on Monday, March 29th I've worried we would have to postpone her yearly cardiology check up, ECG and chest x-ray again, but I called the hospital Monday and talked with them again today, Thursday, and took her into our local pediatrician to have her ears rechecked, etc., and make sure her lungs were clear, and now I need to make the call to either go ahead with her appointment Monday or postpone it again. I hate making the call, especially alone.

Today's appointment was traumatic for Sadie. You never really know she is sick until she is fevering and crying in excruciating pain. She gets a little whiney, but no more than an average healthy child does on a daily basis at her age. She was just cranky yesterday and today somewhat, so I made the call to take her in. Well, her ears are still infected and she's on her last dose of antibiotics from last week. Her left ear, which is the tiniest ear canal of both had wax build up and they couldn't really see clearly, sooo they attempted saline irrigation, which she fought and didn't tolerate well. Between me and the nurse trying to hold her down and flush the ear really just ended up soaking Sadie and I with the saline that was supposed to go in a basin I held while holding down Sadie. ha..ha.. right. Well the 2 attempts at irrigation didn't really clear out the ear enough. Sadie had gotten so upset over the ordeal she burst the blood corpustules in her face and now looks like she has broken out with some horrible on her face. The doctor then had to go in her ear with an instrument and attempt to remove the wax so he could look at the ear. It took all the strength I had to be strong and not break down in tears or walk out with her, knowing she has to have these things done for her health.

In the process her ear got traumatized and has bled some since the procedure. We came home with numbing ear drops for pain, another antibiotic prescription and a prescription for the yeast infection that has broken out in her diaper area from all the antibiotic use. Yet, the little trooper only cried some in the car, grabbing her head, complaining some, but in the store and the pharmacy she put on her sunshine smile and greeted everyone with her hell-whoa's and hi hi hi's. Her face looking like she was breaking out in chickenpox. I feel guilty for getting after her for whining. Hell I had an earache a month ago and I was the biggest baby ever. It hurt like crap! and here this lil girl goes around with one for a month and has whined minimally, less than an average 2 year old, and cried rarely. It's so hard to tell when she is sick, until the fevers break out, of course, and the pain is more than she can bare.

I'm anxious to get her cardiology checkup over, and yet I'm so frightened and panicked. I keep telling myself it will be fine and everything will be working well and her pulmonary problems are still stable, but I can't help but fear more loss. After losing mom, going through the cancer ordeal, and struggling with losses and disappointments in my personal life I can't help but fear and have panic attacks over losing Sadie. She's only mine for this lifetime.. I know that. I know my time with her is short... even if she does live to adulthood.. in the life after this she is God's. I'm her earthly mother, caretaker, and nurturer and I feel I short-change her.

She's an example to me. She has no time for her physical pain, disabilities, set backs, and delays. She pushes forward every day, on the run, exploring and learning, and thrilling in the smallest of things in life. She thoroughly enjoys God's gifts to us all.. music, the outdoors, the flowers, the wind in her face. I'm so ashamed sometimes for letting the depression and struggles of daily living get to me.

I've had loss, pain and disappointment, and I'm scared. Things are looking up for us somewhat. Getting our home is a big thing and big plus in our lives. I finally feel I'm where I belong as far as location and progressing in that area, which has taken me years to get here, and yet I don't dare hope things are on the rise and brighter side for us. I'm so used to turning a corner and being wammed with more heartache and troubles.

I've discovered in the last week that I'm even more withdrawn that I thought. My self-worth and self-esteem have dropped even lower than I had anticipated. I have no confidence, not even in areas I was very confident in years ago. I feel so inadequate in so many aspects of my life. I'm afraid to get out there and be fully involved in church again. It's hard to explain.

It looks like I may be closing on my house any day now. The landlord has a very possible renter for my place and I maybe having to move in a hurry next week. I can move most things alone, but Monday's trip to Salt Lake and back, and then working 6 hours, leaves me little time to move. Sadie's health needs to be a priority, but I also need to get moved and things taken care of at both places. I need to just focus on each day.. Sadie's health is #1, work, and getting moved, and I can only take it day by day. I don't know what tomorrow brings. I hate the unknown.

It's ironic... for someone who has always hated moving, change, new things, new places, and being more of an introvert than anything.. I've sure put myself in situations over the last 6 years that are very very very much out of my comfort zone and increase my anxieties tremendously.

I miss having a councilor. The state provided me one when Sadie was in the up to 3 program to help cope with a disabled child, single parenthood, and losing my mom, etc., and now I'm on my own. I lean less on a couple people I really leaned on emotionally and have learned to not count on them... and yet I long for their constant support, but I know I will never have it.. and learning to let go is a struggle.

Home Sweet Home

Sadie and I are truly blessed! We got our home!! We are truly blessed! I can't believe this house came on the market and my bid was accepted over the other bid made on it. My fingers are itching to start digging in the dirt and planting everything I can squeeze into this adorable yard and set up house in our new home! If all goes as scheduled we will be moved in by the end of April. Happy Birthday to me!! One of my biggest dreams is coming true. I, Julie Ann, is almost a home owner, and I did it all by myself!!! It's such an indescribable feeling for me. Having a place to call home is such a comfort to me. I finally feel I've come home. This is where I need to be. It feels right. It feels good. God is blessing us. I can feel it.

I feel ashamed for having my doubts about moving here. I knew it was right, followed through, and then doubted and felt stupid for following what I felt were answers to my prayers. After much prayer, once, again I learned this is where I need to be and I need to repent and ask for forgiveness for doubting my answers. Once again, everything has fallen into place and I found my little home at the right price, the right place, etc., and I'm once again at peace.