Sunday 15 April 2012

Pushing Forward

Today was rough, it began with such disappointment and it was hard to move past that.  My mom went into the NICU in the late morning, but Shawn and I went out and tried to do something 'normal' to give ourselves a real break.  We wandered around the antique mall and made a trip to Winners.  It was good to do something more normal for a couple of hours.

We spent the afternoon at the hospital with Hope and into the early evening.  She had a period of wakefulness, for over 40 minutes, that was such a treat for us and a real blessing as she rarely opens her eyes these days.  Hope was given a blood transfusion this morning because her blood levels were low after all the blood they've been drawing from her little body.  Her colour improved and she seemed to perk up after the transfusion.  Both of her IV's failed today.   They shaved a new portion of her hair and put another IV into her head and moved the one in her arm to her hand.  It is terrible to watch them do this to he.  I held her face and sang to her with my eyes closed as I can't handle to see the pain in her face.

Shawn and I are at a hotel this evening.  We're taking a break from the Ronald McDonald House and the constant stimulation there, as we're exhausted.  We'll be up early tomorrow and at the hospital for rounds.  At 6:35 am we'll have blood cultures that will have sat for 48 hours and we'll know if the infection is fully gone at this point or not.  If we receive a negative result, a surgery date and time will be set as the surgeon, Dr. Ross, wants the surgery to take place sooner rather than later.  The heart medication that Hope is on will slowly weaken her lungs and we need to have her off this drug as soon as we can.

At this point, our schedule is such that we never know where we're going to be at any given time, usually we're either coming or going from the hospital.  It has become increasingly difficult to make any plans or arrange times for visits.  Some of you have mentioned that you'd like to drop something off at the house for us, and we want you to know that we are very grateful for your kindness.  Even if we're not home, the office is open all day and they'll be sure we receive it.  We truly don't have the energy to sit and chat right now.  Due to Hope's infection, we are cautious about the risk of additional illness before surgery or post op, as the risk of re-infection is too high.  After Hope's surgery, her chest will be open for a few days and the infection risk is extremely high then.   As a result, we won't be allowing anyone to come in and see her, it's just not worth the risk.  We don't mean to offend anyone, we simply have to protect our fragile little girl.

We have been encouraged today to hear of all the people around the world that are praying for Hope.  It was incredible to hear that our entire church was praying for Hope this morning.  We so appreciate these prayers and beg you to continue praying.

12 comments:

  1. *hugs* Enjoy your breather, you guys. I can't believe you've made it this long without escaping for a while. I totally understand. Know that we are constantly thinking about you guys & Hope, wishing we could all be together on the PICU side.

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  2. praying God gives you strength, and the health that is needed to get through this journey..we will be praying.

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  3. You guys are doing awesome. It's so exhausting being in and out of the NICU all day everyday. Every little thing takes a ton of energy that you never seem to have enough of. Time with Hope is so precious, even when things that are difficult to see are going on. I think of you often throughout each day, and stop to pray. Hugs.
    Michelle

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  4. It is well, it is well...through the storms I am held, it is well...it is well...with my soul....it is well it is well, God has won, Christ prevailed it is well, it is well...with my soul.
    This chorus has reminded me, that I am not alone through my trials of life. Praying that you are encouraged today with some great news from our wonderful God who loves you and your family!!!
    Praying until........

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  5. Praying for you guys big time. We're a heart family from Michigan, our little on had open heart surgery as at 7 weeks old two weeks ago. Hugs and prayers for you guys during this difficult journey. With God all things are possible!

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  6. Hi! I am a friend of Sheena McKay's on Prince Edward Island. I am praying for your beautiful little girl and you! My son was born with pneumonia and we understand a portion of the heatache you are going through. We never had to deal with so much at once but I remember the days we were not even allowed to touch him! The awful IV pokes were pins to my heart and every delay seemed like a new mountain to climb. I remember what it was like when I could not hold his hand or even worse, hold him so someone had mentioned to us to read him stories while he was in the incubator! What a joy it was for us to be able to read cheerful stories to our little one! I found it would lift my soul, especially during the times when I didn't have strength to be happy and joyful. I will continue to pray for you and your family and will look for Sheena's updates on FB. Take care! Kathleen McInnis

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  7. Words are unable to express feelings of heartache that you and your family are going through. Please know that there will be constant prayers going up for you from Windsor. God can do great things and will use all situations for His glory. May our prayers play a small part in that and hopefully give you strength in this time. God Bless!!

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  8. Big sigh... So sorry for all the waiting... i know the timing has so many implications for you. Especially as you endure all of this away from home, without the calm or comfort of your own space where you can let go and just BE, even for a moment. We remain in prayer for all of you. For God's timing in all this. For Hope to just get bigger and stronger while she waits for her surgery, with absolutely NO ill-effects from the drugs she's on in the meantime. Praying you get some good and easier snuggle time, and that you have more than enough grace and peace for this leg of the journey. He is WITH you. And we are rooting for you. - Annie, Paul and Miles in Toronto

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  9. I'm praying. May God draw you up and give you strength.

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  10. Hi, Amy & Shawn -

    I just wanted to let you know that we are all still praying for you as well. I know it must have been tough to try and do a 'normal' thing - your mind is always elsewhere, and burdened with worry. I was happy to hear that Hope had some 'alert' time - those moments can be few and far between at times too - treasure every second!! As for allowing people to visit (or not), do not feel bad for not allowing - people understand (and if they don't they should learn to) - this is YOUR baby, and you do what you feel you need to as a parent. There are so many things that are so out of your control, this is one that you can play a role in... Don't EVER feel guilty...I know its tough (I've been there before too), but you do what you have to...
    Anyhow, I just pray & hope that things get better, that Hope will have a successful surgery (and soon!!!) - You are doing a wonderful job as parents (don't ever doubt that!), and you are being thought of and prayed for continually...know you are not alone - and we're wishing you all the best...

    Tina (from PEI)

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  11. Amy....I just saw the link to your blog through someone's FB page in the USA. I live in Edmonton so if you need anything...even a cup of coffee, a hug...just let me know. Praying for your special baby girl. danleswiebe@shaw.ca

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  12. Amy, I just wanted to let you know that we have been and are continuing to pray for healing for Hope and strength for both you and Shawn. I also wanted to let you know that your church family not only lifted your little girl in prayer in the morning services, but the evening services as well. We're praying and trusting that God can and will do something amazing. Stay strong and when you don't think you can stand anymore, let God's love and faithfulness carry you. We love you guys,

    Brenda & Cory Pytlarz

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