May 27, 2015

e m o t i o n s

  What I wouldn’t do to go back to this sweet bliss of lying on the bed after her nap, nursing and playing as she wakes up. Instead, I am sitting in a vinyl recliner that I had to beg a nurse to grab from the NICU upstairs. The only similarity to the above pictures is that we are still nursing, and still co-sleeping, albeit sitting upright instead of laying comfortably in bed. 

I am not sure when this will become “normal” to me, it feels like a bad dream that we can’t seem to wake up from. On top of the stress in the hospital, I often find myself asking if the emotions I’m feeling are okay. Am I allowed to cry? Yes. Am I allowed to be angry? Yes. Am I allowed to be relieved and excited when we get Ivy to crack a smile, take a bite of food, pick up a toy, or get good test results back? I sure hope so. 

I threw up yesterday, twice, and all I can think of worry about is if I’m hurting Ivy. She has no immune system, so if my throwing up wasn’t from dehydration, nerves, or yucky cafeteria food, I could cause her to spike a high fever which is a super-no for a child with cancer. But, enough about me. 

Ivy has been such a trooper these last five days of treatment. She is in the first phase, called Induction, which consists of 28 days of chemo and monitoring here in the hospital. Every four days she gets Vinchristine, which is a syringe full that they are able to push through her Port. Her port is on her left side, and is basically an internal IV that they can access at all times (super helpful during those 2am blood draws for lab work!), and is how she gets most of her medications and fluids. She also gets chemo through a lumbar puncture which happens every eight days, called Intrathecal chemotherapy, and that puts chemo in her cerebrospinal fluid. 

On Monday she had Pegaspargase (PEG)  which is yet another form of chemo, only administered one day out of 28, through an IV Drip bag. She has been wiped out all week since, and the only food she successfully wanted to eat was her three bites of vanilla pudding- a pill goes on each bite. She is totally a pro already! I am so proud. 

Ivy’s still unsure about her team and nurses. Every time they come in she will wave and yell, “bye!” Trying to pursuede them to go away and leave her alone. I don’t blame her, although their support has been amazing. 

The biggest feat of the day was that she was able to push her stroller all the way from our room to the outside garden! I am so proud. She hasn’t been walking since we got here, and it’s so hard to see our once wild and active babe struggle to walk. But, as always, she will power through and be even stronger than before.

7 thoughts on “e m o t i o n s

  1. Brianne

    I can’t imagine what you’re going through, what you’re all feeling. What Ivy must be thinking. I hope this first phase goes by quickly and ivy gets her strength back. Praying for you guys every day.

  2. Ayesha

    Pop in to check on you guys everyday! Ivy is amazing and she is surrounded by the most amazing family. You all will get through this. Prayers and lots of love

  3. Lena

    You are leaving every parents’s worst dream. Stay strong for your beautiful daughter and the boys. Hugs from Canada.

  4. Nicola

    You’re allowed to feel all those things (maybe less of the throw up ;). It wouldn’t be normal if you didn’t. Make sure you take the time to cry, be mad, feel anxious, etc. And don’t forget to check in with your husband and boys… I’m sure they feel the same way but they’re all trying to be strong. You have to take care of yourself too. I can’t imagine all that you guys have gone through this past week, but the good news is that kids are so resilient. And your little Ivy looks like a trooper! Especially with her big brothers around to entertain her. Thinking of you guys. And keep sharing… You’re one strong mama!

  5. Mallory

    You’ve got this, she’s got this. Feel all the feels, because you need to, she needs you to, they need you to. Wishing and hoping that this will soon be just bad memory for your family and everyone will be happy and healthy in no time. Sending good vibes and sunshine from Florida.

  6. Vanessa Pinkham

    You are an amazing mother. What you, what your baby girl is going through is so unfair. You’re allowed to cry, to be happy, to feel everything you’re experiencing because by you allowing it, it will pass over and through you, and then you can remain strong and resolute for your baby.
    As a toddler-nursing, cosleeping, cuddle loving fellow mama bear, I cried for you reading what you are all going through. I hope all of your needs are being met so you can just focus on pockets of goodness as they come. Good, better, wonderful times are soon around the bend. Sending all of my love, strength, and support to you as your daughter heals. -Vanessa

  7. lil_fishhh

    i’ve followed your blog and instagram for a while now… always admiring the love that flows abundantly through your family. i am truly astonished by your strength and grace through this new chapter of life. though this is not the chapter you would have chose to have written, you are a strong author who will write a wonderful and courageous battle for your sweet baby girl. sending much love and prayer to you and yours!

    -lil_fishh

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