Tuesday, June 21, 2011

June 21, 2011 - Day #17

Riker seems stronger and healthier every day :) We had a wonderful visit and she's smiling and laughing now. The staff at the hospital all tell me what a happy and beautiful baby she is. They don't believe me when I tell them all she did was cry when she was home. It is so nice to see her so content. It makes me wonder/worry that the cancer was eating at her ever since she was born. I hate to think my baby was in pain that long.
I am getting more comfortable in the hospital and am finding ways to better advocate for my daughter. The breastfeeding is going well and I've requested that the nurses try to bottle feed at least once per day. I'd like to eventually get her off the NG tube and cannot be there 24/7 to breastfeed. The nurse seemed uncertian but I was able to get comfirmation from the doctor that they should be trying. It feels good to be on the same page as the doctors :)
Now that we've settled in, I'm becoming more concerned about Riker's development and her ability to hit her milestones. It's scarey to think that she may spend her 1st birthday in the hospital and she hasn't even learned to roll over yet. Obviously, she will be a bit behind with all of the chemo and sickness she'll experience but my poor baby hasn't even learned to roll over yet!
Her room is 12x12 at best and the floor is cold and hard. In her bed, they have her sleeping in her boppy pillow all propped up so that she cannot move. The only piece of baby furniture she has is a papasan swing. How is she going to develop there?
At my request, the doctors met today to work on a plan that includes a physical therapist, an occupational therapist and a speech therapist. I look forward to discussing their plan tomorrow. I am excited to see Riker be as normal as possible in the impossibly abnormal enviroment she will call home for so long.
Unfortunately, all of this is really taking its toll on me. Each day I become more and more exhausted. My body aches and I am scared to death I'm going to get sick. Juggling my family at home and my baby almost an hour away in the hospital is more difficult than I could have imagined. I am rarely getting more than 4 hours of sleep most nights and I find my eyes heavy during the long drive back and forth. Something has to give soon - I need to find some time for rest. As time goes on, I hope I can find a more reasonable balance. I don't know how I'll go back to work when the time comes.

5 comments:

  1. Take time for yourself each week... even an hour will help. Don't hesitate to call your doctor and discuss feeling sad and anxious! The human brain can do amazing things; Riker will learn at her own pace. I promise, even babies in cases of severe neglect can catch up. Just keep talking to her and snuggling her! Love from the Myers Family!

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  2. Hello Tory,
    Finally I figure out how to post a comment; Would you be able to nap right there in her room? You could nap after you feed her.
    Hang in there, you are doing everything you possibly can and God will give you the boost you need to make it through, and we will continue to support your family through all this;
    About the fortifier; There is such a thing as true Human Milk Fortifier made from human milk; If you would like to connect the doctors with this "Prolacta fortifier" give them this website,
    International Milk Bank Project; they donate milk to orphanages in Africa and use other milk to make this "Human Milk Fortifier";
    I actually have the contact person's name at work, connect with me at work and I'll give you the info;
    LOVE, PRAYERS & HUGS,
    Gloria

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  3. Both Daniel and Matthew never rolled over till they were 7+months old and their Dr. said that was perfectly normal. Nathan was rolling over both ways by the time he was 6 weeks old and he was perfectly normal. Every child is different and will develop in their own time. You are doing an excellent job making sure Riker has all the help she needs to be a healthy, happy and well developed child:) As for sleep... Have you looked into the possibility of Riker being treated at CMMC? I know that MMC is a great hospital, but if CMMC has the same medications and facilities for her and you maybe that is an option that would fit better. Just a thought^j^

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  4. dont worry about milestones. the important part is getting her better, and everything else will come in time. eyvie just rolled herself over for the first time yesterday, and henry never really rolled over. he didnt walk until almost 16 months. she will catch up. and as for the bottle thing, have you tried different types of bottles? henry would only take silicone nipples and pacifies, not rubber. and what temp are the giving her the milk at? maybe it is too cold or warm...henry still only likes lukewarm food.
    take care of yourself...you cant be getting burned out. it is ok to sleep. you dont have to feel guilty for missing out. neither of your children are going to remember this when they get older. you arent failing either of them in any way. sleep, take some benadryl if you need to. you are going to beat your body up, and then you WILL get sick, and then you wont be able to visit for a while, and i know that will bum you out. keep drinking water, taking vitamins, and sleep as much as possible. you are a great mom.

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  5. Tory,
    The bottle: After Molly got really bad mouth sores for the first time, she stopped taking the bottle. In desperation (like you, I've got another little one at home and can't be at the hospital 24/7) I searched on Amazon for breast-like bottles. I got one that Molly totally took to. It's called the Como Tomo and it's kind of spendy for a bottle but worked like a charm. Oh, and she is also picky about the temp - has to be perfectly warm.

    The milestones: I know, it sucks to think of your baby hitting milestones late, and in a hard hospital. Molly (8 months last Wednesday, diagnosed with ALL one day shy of 4 months on Valentine's Day) can just now sit up on her own without me worrying all the time about her tipping over. She is nowhere near crawling. The Child Life people (do you have Child Life folks at your hospital) have kindly let us borrow a play mat so I can sit with Molly on the floor of the room. If there's room for a mat on Riker's floor, it might give her and you another way to be play together and gently encourage her little body to explore itself.

    Taking time for yourself: yes, you will find a way to pace yourself. You are a strong mama. As I've come to find out, us moms of cancer babies are tough, tougher than we ever thought. And part of that toughness comes from finding our own personal balance of caring for our kiddos and caring for ourselvs.

    All the best,
    Liz

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