Tuesday, 9 April 2013

Princess Passes

I have been extremely poor with my updating lately.  I'm exhausted.  I find myself sleeping poorly, eating terribly and not being able to keep up with cleaning, grocery shopping or other necessary tasks.  I'm not exactly sure why everything has become overwhelming and poorly cared for.  I'm happy, I don't feel sad or upset about life.  Having Hope out on passes is fantastic, although it can be a great deal of work.  Perhaps knowing that I need to pack up our entire house and move in 3 weeks is making me less motivated to clean.  I'm not sure, but I need to get out of this funk before I get really behind.  Sadie had to go to bed for the first time in her life without milk, I forgot to get it.

Hope's party was fantastic and we were thrilled that our guests donated over $1,000 to Heart Beats!  An amazing organization that practically helps families with children that have CHD's.  The remnants of the party lay around my house in piles and I lack the motivation to put them away.  I keep telling myself I'll do it tomorrow, but that has come and gone.

Today at the hospital the doctors let me know that Hope could go on passes regularly until we get her calorie count up, her fluids balanced and her electrolytes stable.  This could take some time and they want us to have some freedom as we work through it all.  There is talk of an overnight pass this week as well.  It's exciting to be so close to coming home with Hope, but also makes patience more difficult.

Sadie was up all through the night last night and after running a fever at her grandparents house today, I took her to the doctor on my way home from the hospital.  She has a bladder infection and has been started on antibiotics.  She's already been up once tonight as her fever is still lingering.  Thankfully she's not contagious to Hope, a bladder infection is much better than strep throat in this house!  I'm hoping Sadie will feel better after 24 hours on the antibiotic so she'll be less clingy and stop having accidents.  She peed her bed for 3 of the last 4 nights.  I would put her to bed in a pull up, but we ran out and I forget to get more every time I end up in a store.  I've lost a bit of my touch...I need to get it back!

Hope smiled once for me today, something she has been avoiding for a while.  It was great to see her happy, even briefly.  She's quite content and relaxed, but not truly happy very often.  I wonder if the potassium is making her feel a bit yucky and taking away the desire to smile.  It's so refreshing when she smiles and reminds me that she's got a little personality in there.  We're hoping to start back with physio this week.

Hope has been started on puree bacon.  It's pretty gross looking.  Please pray that she will begin eating it to give her more calories.  Who doesn't like bacon?  We also started concentrating Hope's feeds this afternoon.  Please pray that she tolerates the Similac being added to her feeds for extra calories.  This is what we previously added to her feeds successfully when she was much younger.  If this works, we are even closer to home.

Thank you for continuing to pray for our family.  Please pray that Hope would come home soon and that our family would find our groove as we have her home more regularly on passes.  We absolutely hate bringing her back to the hospital, it gets more difficult each time.  Please pray for Sadie as she starts the adjustment of having her sister home more often, she's acting out more through this process.  Please also pray that I could get the rest I need.  I went to bed absolutely exhausted and could not fall asleep.  I'm in desperate need of a good rest and fear I'm going to get sick if I don't catch up on my sleep soon.  Would you also pray that I get my groove back?  I want my house to be organized again.  I need the motivation to pack and the memory to get groceries for my family and to cook too!


  1. Hi Amy, I don't know if anyone has mentioned this in previous posts, but, you really need to consider adrenal support. Your adrenal glands are your stress glands- they release chemicals into your body to regulate body functions when in stressful situations. Your adrenals have been extremely taxed for one year. MD's do not recognize adreanl fatigue and will sluff it off, all they will do is a cortisol test which does not reveal the true health of the adrenals. You must find a naturopath who understands this.
    I have gone through long term stress in my life and I recognize the symptoms. And it sure seems that you need to consider this.
    High doses of vitamin C should be taken daily (1 tsp of acerola powder is where I would start...divided up maybe 3 times throughout the day) Also, High potency vitamin B complex (food based supplement only, not synthetic vitamins) once or even twice a day. THere are many herbs and homeopathics I have taken throughout the years I was diagnosed , and because of pregnancies,adrenal repair has been a slow going process for me.
    Heart palpitations can also happen when it becomes more advanced adn anxiety attacks.
    I also wish you would consider feeding Hope something other than commercial bacon for fat. How about lightly cooked egg yolk with butter? Or chicken liver cooked in home rendered lard. There are so many organic meat producers in this province you can even find bacon made from free range pigs, not commercial meat.I have researched food alot for the last two years, my 5th son didn't grow from age 6 months to 1 year old- what finally made him grow, and flourish, was a diet of real food, from local producers. Lots of fresh cream and egg yolks, and probiotic food. HE grew 1 lb every 3 weeks for a few months and has been growing at a steady pace since.
    I'm sorry to give you more unsolicited advice, you probably get alot. I would encourage you to pray about waht I"ve said.
    God bless you and keep you, the Lord make his face shine up you and be gracious to you, may the Holy Spirit give you wisdom from heaven as you seek to nourish your own health. in Christ, Stephanie

  2. Wow...sounds like you have that old expression...."I'm so tired I can't think straight" problem.....
    I just read the comment above. She sounds like she knows what she is talking about? Sometimes we need to step out of the box of medicine world, and try natural things!
    Bless Stephanie for sharing her problems.
    I hope and pray that your life will become more stressless, as you are totally moving in the right direction. Take care of Amy....!
    If your children don't have their Mother, than they have no one. YOU are worth the investment!
    All the best in the days ahead. Praying for Sadie with her bladder infection...that is so sad for her. Wow....don't forget, replacing something in her diet with yoguart, it replaces every bacteria that the antibiotic steals from her body! A Pharmacist told me that when my daughter needed an antibiotic, and have always remembered that.
    May God bless you as you continue to live for Him, and be a great wife, and mother to your family. Yes you have a lot on your plate, so we your "family in God" will continue to pray!!
    All the best!

  3. I have never met you but came across your story. Sometimes when you are going through such a stressful situation all you want is a place to vent and for someone to listen, Not to tell you what you should do.
    I know everyone means well but try to put yourself in that persons position. You will never trulyr understand how hard it is for a mom to have such a sick child and there is no one way of fixing it.
    Anyways all I wanted to say was you seem like such an awesome mom. You are a trooper! When u get tired and worn down, i know it is so hard but just take one look at your beautiful daughters , they will bring all the sunshines to your world. Keep doing what your doing, you are doing a fantastic job! I hope your daughter can come home soon.

  4. Rita May and Kaiya9 April 2013 at 11:06

    Hi Amy,
    Wow. I can soo relate to what you're saying about keeping up with everything. Please know that you're not alone in all of your feelings. I am sure you do know, but when it's you, it can be hard to remember that these things are almost expected. We have so much on our plates all the time! I think the key is to forgive yourself, ALOT. I still have trouble many days keeping it all together, even now that were home. I do recall that transitioning between day passes and coming home as being one of the more trying times. You feel so close, yet so far away at the same time! Like you are being conditioned again to go one way, then have to re-adjust to the other routine all over again. Then having to move, ugh, I hate moving. And having 2 sick kids...I have been through that as well. Its terrible, we all got the norovirus when Kaiya was first confirmed in need of transplant, last year, including her. Since she's been home we have been in and out of hospital, and me and the kids also got the flu bug again. Anyways, I don't mean to take away from your stuff, but I always feel better when I can relate to someone else; I didn't always have time to read or write,and well, I do sometimes now. May this give you something to feel hopeful. Please know that it seems like you are doing your best and that you are doing a good job, as a mother, despite all the challenges. I appreciate being able to read your story, and I will be thinking of you and your family as I go through my days. Hang in there, and maybe we will talk someday. :)

  5. Hi Amy,
    Have been following your posts with great interest. I identify with having a child that doesn't smile often. One of my sons was born extremely premature at 24 weeks. He was in the hospital for a long time and had severe developmental issues as well. I swear he was as serious as a judge for at least 2 -3 years. Maybe it was from all the poking and prodding and discomfort he had to endure. But, he is now 6 years old and is as happy and smiley as can be and has totally caught up developmentally. I have really admired how you advocate for Hope. I just wanted to encourage you to keep doing what you're doing. I know you're exhausted, but it is worth it. And God can do really amazing things.

  6. Honey, it sounds like burnout. You have waited so long to get Hope home, and now you've reached that milestone, your batteries are just run out. Don't push too hard to get everything done--rest and let it be as best you can. Praying for you!

  7. Those of us from far away will redouble our prayer efforts for you. Also praying that the local body of Christ will be able to step up in practical ways to bless you guys. Perhaps taking your grocery list and picking things up for you, sending fun new activities/crafts/stories/games to bless Sadie and make her feel really cherished, offering to babysit Sadie for free while you and Shawn sneak out for a date, coming alongside and helping you pack in the way you wish it to be done (and bringing dinner with them), coming and doing your laundry or taking it to be cleaned, blessing you with a gift of a housekeeper for a few hours if that would help... Galatians 6:9-10 "And let us not grow weary of doing good, for in due season we will reap, if we do not give up. 10 So then, as we have opportunity, let us do good to everyone, and especially to those who are of the household of faith." Praying the Holy Spirit touches people to make it so in exactly the ways which would bless you most.

  8. Praying for you every single day.

  9. The stress level of everyone needing a part of you can certainly take its toll. And you have been 'ON' for over a year now. No wonder you are burned out! Try not to be hard on yourself. You know that God and everyone else forgives you. Breathe often and deeply. Take care of yourself first for a bit. Thanks as always for your honesty. When my days get annoying, I consider the strength and courage you need for every waking (and likely sleeping) moment. You are a marvel. Thoughts and prayers from Ontario - back from Down Under.

  10. Pork is SO difficult for even adults to digest. I guess they want it for the fat calories? Maybe you could suggest chicken or beef? Or even egg yolks from pastured chickens boiled just a few minutes so it is warm but still soft. Another thing that has very healthy fat and good calories is pureed avocado. Easy to digest and full of nutrients for her.

    When my micro-preemie had me exhausted, I used melatonin or Benedryl. Really helps to get to sleep!

  11. Amy, I was just going to say real quick that even moms without children who have been through all that Hope has go through periods of feeling how you are now. I just ride the waves and know that one day I'll feel like tackling the house and everything else again. Let yourself off the hook and just be good to yourself. I don't know a thing about adrenal health or the safety of bacon. And I know that everyone who has commented on here means very well. I just hope you don't get overwhelmed with all the advice. I just want to say it's normal how you are feeling, and you will make it through. And I do think you're feeling this way now because you are adjusting to having Hope out on day passes and you are juggling a 2 and a half year old and a one year old. And that is not easy task even in the best of circumstances! So, please, let yourself off the hook. It's ok that Sadie went to sleep without milk. It's ok that the house is not perfectly clean. Do what you can do. Because, honestly, you are doing amazing. One day at a time!!! Praying for you all.