Sunday, June 27, 2010

A family divided

Today, we had a really sweet moment - our very FIRST picture of the 4 of us, taken in a hospital room, with 3 of the 4 of us in hospital gowns since person #4 has a nasty infection persons #1-3 have no interest in acquiring, but a family picture nonetheless :-):

It occurred to me how symbolic it is to only just now be getting this picture when Bodie is over 4 months old. We just haven't been together that much and during the 3 weeks we did have at home together, we just never got around to it, always figuring we'd have more time to do it later. Nowadays, we make it a point to try to have a few hours a week where the 4 of us are under the same roof. I know, I know - a few hours a week? It makes me sad, too. I know a lot of you who read my blog are mothers of young ones, and I hope tonight you'll hug your babies a little tighter, thanking the Lord that your whole family is in one place. I wish we could say the same for ours. I knew we will be eventually, but it's still a ways away. I can promise we'll take lots of pictures when that does happen!

I try to remain as positive on my blog as possible, but I also want to let you in on some of the struggles we really face as parents of a critically ill child. I don't want to sugarcoat it - it is hard. And we make it through because we rely on God. But some days are harder than others. And I want to share this with you, so that those of you who pray can pray for us as we work through all of this.

Today, I went to church for the first time in a while, and I have to say that it was actually a little difficult, but not for the reasons you might think. We love our church community and in one sense, it was wonderful to be back among our community.

But the church is also where Sierra's preschool was, and it really broke my heart to drop her off in her Sunday school class, which happens to be the same room where her preschool class was...there are just so many memories of her having fun there and it breaks my heart that she's not there with her friends anymore.

The other reason it made me sad is that I've been in survival mode for so long, going back and forth between hospital family and home family that I haven't really had to live out in the real world. You know, when you have a really sick child, your entire world just stops - and, if, like us, you know your child will not be better until after another surgery, you just sort of hold your breath and wait for your lives to start again after that surgery. And when you don't have to be out in the real world too much, you can kind of live in a little bubble and you assume the rest of the world has stopped like yours has. But when, when you're forced back out into the real world, you notice that nothing has stopped - that the world has gone on, that children have grown, that people have gone on vacations, that people have gotten new jobs, that things have just, well, kept on going. And it's a rude awakening. I think that's what happened to me today. And I guess I just wasn't really prepared for it. I guess I sort of half-expected everyone to be in the exact same place they were 4 and 1/2 months ago, when our world came to a screeching halt. And when I found that they were in completely different places, I was sort of flummoxed, wondering how that was even possible.

So, there you have it. The good news (and there always is, even admist the chaos) is that Bodie is doing well. He has been continuing to gain weight, albeit slowly. And he's smiling most of the time. I think he's working on stealing the hearts of every nurse on staff in the CTICU (as is Sierra - they come looking for her to say hi!). Can you blame them? I mean, look at this smile:

Prayer requests for tonight:
1. Pray that Bodie continues to eat and gain weight.
2. Bodie continues to have blood in his stool, so they're assuming he's having another run-in with c-diff. They started him on antibiotics for it. Please pray that the antibiotics treat it quickly and effectively so that he doesn't get as sick as he got before.
3. Pray for everything going on in our family right now. It's a delicate balance and it honestly doesn't take a lot to tip it one way or the other.



  1. We continue to send love and prayers for Bodie and your family. Thank you for your honesty - which is also inspirational. We pray God continues to carry your family through the hard times and blesses your family for faithfulness. Love, hugs and prayers, Bonnie & Kerrs

  2. Dear Amy. Please know that you all are in our prayers and thoughts EVERY DAY, every moment... sending you all loads of love. My Bodie, sleep with angels, baby. I miss you. God Bless. Nairi

  3. Hi Amy,

    I just stumbled upon your blog; I am the Mom of three, my youngest is 7 months and has HLHS. Just having read bits of your story, I wanted to share this: my daughter presented with bloody stools around 4-6 weeks. I will give you the short story which is that ultimately she was diagnosed with cow's milk protein intolerance, so I have been dairy free. BUT, after her Glenn at 4 months, the blood had still not subsided so the GI team in Boston suggested that I can the breastmilk and go with straight Neocate formula; that, coupled with the NPO status prior to surgergy did seem to get rid of the bloody stools, but not Cora's general fussiness while eating, inability to take more than 50-60 ccs at a time, and very poor weight gain. Finally, when we got home from the hospital and we started beefing up her formula to 30 cals/ounce, things got really bad, and then I realized the culprit: polycose. Are you using it? No one has signed off on my theory, but the NP at Children's Hospital said lots of their cardiac patients can't tolerate the polycose. And, when you think of it, breastfed babies who get too much foremilk which is really high in lactose have lots of GI discomfort and GI irritation; why not with polycose (which is simply glucose powder)? Hope I am not overstepping or discountin the parts of your journey I don't know about, but if I can save one more family from the angst that we experienced.... Since Cora's Glenn, she has been exclusively breastfed and has posted her best gains since birth (albeit she still weighs a slight 13 pounds!) Good luck.

  4. Bodie's smile just melts me too, and you, my lovely Sister in the Lord, are too precious for words. I weep and pray, rejoice and pray and love you with all my heart.

  5. So glad he is doing well!! Still praying for him and for you and the rest of the family. Love that smile

    Blessings to you