Thursday, March 13, 2008

Home from the Hospital

Yesterday we brought Rainer home from the hospital. What a relief, yet how weird to arrive home with him for the first time since his diagnosis. The hospital was getting to be "our new home" practically. I stayed with him round the clock for the entire 13 days, save for two times when his daddy stayed with him while I left for a few hours.
For the most part we fell into a happy routine within the four walls of our room (he couldn't wander the halls because of his immune suppression) and had our meals delivered to us on trays (it turns out that the hospital provides trays to nursing mothers as well as the patients themselves--that worked out well because I wouldn't have been able to leave him to buy food). As I expected, bringing him home from the hospital brought up more emotions. No longer in our little bubble, I'm having to face, again, the reality of his having cancer and wishing it weren't so. It seems so unfair to the little guy, and yet . . . it's what we have. And we are so grateful for our wonderful little boy. Here's a list I made while in the hospital:
At Home, Post Hospital
  • be a good mom
  • protect him
  • let him have a happy childhood; don't be over protective
  • make porridge
  • use sunscreen
  • make or buy hats for him (all cotton)--or headscarves
  • get into a routine, seriously
  • start running
And yet, and yet, I can feel myself being overprotective already. It's going to be hard to find just the right balance.
His daycare buddies made this welcome home poster for him. And all the daycare families and teachers are delivering meals to our home nightly for a week. How wonderful is that? I am so grateful for the help. Dinnertime in any family is a big stressor, I think. I love not having to think about it for awhile.
Here's a shot of him sleeping in his hospital crib (which he got quite used it, I might add. Last night was a rough night for him readjusting to his own bed). His IV line was going almost constantly the whole time we were there.

Twice we were able to disconnect him from his tubing and take him to the roof (he can go outside, just not around people and crowds. He wore a mask to walk through the halls and ride the elevator). He loved getting outside, and look at that view of beautiful Santa Barbara. You can see the ocean from the hospital.

So, we're settling in today. He's in good spirits, still not walking at all, nursing around the clock, happy to play with his toys and take stroller walks. Right now he's napping. I'm going to start some laundry and unpack our bags. We are staying very positive. We'll know more next week about how his body is responding to the chemo, but so far he seems to be doing great. If my mind wanders down a negative path I just re-focus and try to stay in the present.

Every day we have together is a gift.


Susan said...

Oh thanks for posting an update. I know how hard it is to leave your child in the hospital and I'm sure you didn't get really great rest there. I had a smile when I saw that you were nursing him still and that is going to be so good for his immune system. I hope you are eating well and staying healthy so you can spread that to your sweet little boy. I am continuing to pray for you.

Gift of Green said...

Oh Mary Beth, how can you put "be a good mom" on your list? Are you doubting yourself or something?

Gift of Green said...

P.S. Rainer looks GREAT!

Sarah and Jack said...

Mary Beth,

You are already a wonderful mother. You are staying positive, you are keeping it together, and even though he is still pretty young, he knows that.

Make sure to take care of yourself too.

If we were closer I would give you both a big hug.

Amy said...

Mary Beth
So glad he is home! Happy thoughts coming from the midwest!
sent you a little e-mail

Cara said...

Mary Beth, my stoping to lurk to leave a post seems really banal given all you have got on your plate at the moment. I don't know you and yet I feel I do from your blog, I am praying for you all. Please ensure you take time for you - you need to be strong, and if that means time out for you - then you need to take it. Cara

AnnieB said...

awh sweetie, glad the adorable Rainer is home and doing ok. You are doing so sound so strong in the face of it all. Do look after yourself too. My heart is with you, you know that...


driftwood said...

thanks for letting us know how you are getting on, I've been thinking of you xxxx

Mystele said...

so very glad you're home...

dottycookie said...

I think you're doing amazingly well, and I bet your family do too. I'm glad you are home, and I'm glad you were able to stay in the hospital with Rainer - who is looking lovely, by the way! Fab that you're nursing him, I'm sure that will be helping lots.

Hang in there, we're rooting for you all.

Christy said...

Glad you are back home again. I know you're doing an amazing job looking after Rainier. Don't forget to take care of yourself too. :)

Firefly said...

i actually came to the blog tonight to look up your yummy recipe for granola and saw the post about Rainer. i've said a little prayer for him and the family. it sounds to me that you are doing everything just right. is there an address that 'little gifts' can be sent to? all my best.

Sharon said...

I'm happy to see that you're all home again. Ranier looks so good - and happy! You guys are in my thoughts.

BTW, you're an amazing mother, so you can just go ahead and cross that one off your list.

Susan said...

That photo of Rainer sleeping in the hospital crib just made my heart pinch- he looks so sweet! You are doing such a great job of keeping your positive attitude. You and Rainer remain in my prayers.

amanda said...

Thank you so much for taking the time to post an update about Rainer. We've been thinking about him and praying he responds well to the treatment. Your positive outlook is very inspiring.

It looks like his friends all missed him, that must have been a warm welcome home. Thank goodness you are still nursing and can give him all the comfort that brings during a stressful time.

As for your list . . . you can put a big old checkmark next to "be a good mom".

Hugs to you and we're sending our prayers and positive thoughts to Rainer and your whole family.


lizziemarie said...

Wow, he looks very robust! You are a beautiful and inspirational Momma. I just recently started reading your blog and put a link to it on mine. I hope that's okay:) I happen to live in Lawrence,KS and saw that you used to live here too. I'm thinking of you and your sweet family and wishing the best for you all.

About Us: said...


So glad to hear you are home. You are a wonderful mama and you inspire me. You will take great care of little Rainer. Be sure to take care of yourself also. Thanks for updating as you can.


milcolores said...

I send healing wishes for Rainer and all of you ; ) Rainer looks GREAT!

Meg said...

I'm so glad you posted an update--and even more glad that things seem to be going well. I love your positive attitude. It will help you establish a "new normal"--and I know you'll figure out a way to balance that overprotective urge. I think it's a lesson all moms have to come to grips with eventually, but you're dealing with it sooner than most. I think you're going to do a great job. I'll keep praying for Rainer and your family.

Jonah Lisa said...

So glad you guys are home. I bet it will be easier to keep the scary thoughts at bay when there's laundry to fold and kids to feed and toys to pick up. You sounds strong and as ready to meet this challenge as a mom can be.

When your mind wanders to the dark side and re-direction isn't working, come here and read your words for a big healthy dose of strength and inspiration.

taimarie said...

I have been thinking of you and Rainer so much and was so glad to see the update- he looks so good! And it is so great that he is nursing around the clock, you are giving him so much. I hope you can settle into home together and have some time to just be. So many hugs and warm thoughts header your way.

Sarah said...

I am happy you were able to come home. I have been thinking about you a lot lately, and sending prayers your way. It's wonderful that he is still nursing and receiving that comfort from you and all the health benefits that go along with it.

Beth said...

I haven't checked in since the first portion of your 16 month update, and then read your comment... I am sending so many good, positive thoughts and vibes your way. He looks good, and I bet it's nice to be home. You asked about at home routines and most of these activities are fun to do in the morning before nap ( and most of them don't involve crowds/etc.

I'm thinking of you and your family and am humbled by your positive parenting.