We had dinner with friends last night (who brought the kids the cutest elephants as gifts- we have a pic of Maya with hers here
), so we decided to make the 11pm/midnight visiting times (hence my being awake right now and attached to MG). When we get there, Maya is screaming her little lungs out (which sounds terrible since she makes barely any sound), but there are tears. I mean, she is upset. The nurse tells us this just started and that she was fine at her 8pm feed, where she took a full bottle and then fell asleep. She had to have her OG tube replaced (they are doing OGs until she is off the cannula) and so I thought that perhaps the replacement hurt her little throat. But regardless of the reason, she is screaming and crying, and it is heartbreaking. We nixed the bath and Peter just wiped her down and, as soon as possible (which wasnt soon enough for me), I was holding her. She did breastfeed off and on for about 20 minutes. She'd suck and then pull away and cry, and then latch back on, and repeat. She transferred 15cc, which was amazing considering how much she cried or just held my breast and buried her head against it. Afterwards, I just held her and sang to her until she calmed down, while we gavaged her milk. She finally fell asleep (or so I thought) and, since I was soaking wet from leaking, I decided to put her down and go pump. Maya had other plans. The second I put her down, she started to cry again. So, up she went. I held her until Peter put Bobby down from and held her so that I could pump and not worry that she was crying in her crib. When I came back, he was holding both (I have a great picture of the three of them that I'll post when I'm more awake). She finally fell asleep around 1:30 and we were able to put her to bed, but, of course, she was woken at 2am for eye drops, diaper change, and her next feed. She took her bottle for Peter and was able to fall asleep. Once again, I had to go pump, so Peter fed Bobby as well, who also took his bottle.
On the one hand, it was so wonderful to be able to comfort Maya's cries, but on the other hand it was so hard to have them. She and Bobby dont really cry so when they do it means there IS a problem. Was she hungry? She didnt seem to be comforted by food. Was she lonely or scared? Could be, since holding seemed to help a little. Was she is pain? Possibly (Probably???)... I hope not. She looks at you with these sad little eyes and her mouth is open but so little sound is coming out. It just melts you and you want to change the world for her. Even though I am so wiped out, I wish I were there right now, for her 5am care time... And, of course, for Bobby's 6am... And then the 8am/9am... You get the picture. Leaving is the worst, no matter what time it is...
I saw the following info on a blog I follow. As you know, my brother-in-law died from neuroblastoma, and things of this nature are of special interest to our family. I'll be mailing out a card on Monday and I invite you to do the same. (FYI, Snopes lists this as legitimate in case you are concerned...)
I just learned about a 5 year old boy named Noah Biorkman who is in the last stages of a 2 year battle with Neuroblastoma Cancer. His family is celebrating Christmas next week and Noahs request is to get lots of Christmas cards.
Please let's make this little warrior's wish come true.
Send cards to:
1141 Fountain View Circle
South Lyon, Mi 48178
We continue to pray for your little Maya! May God be with your family and give you peace!
I can't wait to see the picture of your husband and sweet babies. So glad you were able to comfort Maya when she needed you.
Noah's wish for cards has been in our local papers and on our news broadcasts for a few days now.
I'm no snopes, but I think that newsplay makes it seem pretty legit :) How great of you to solicit and participate.
My thoughts are with Maya (and Bobby, too!)
Thinking of you all - I'm sure that was heartbreaking.
Poor little Maya. I bet her throat hurts. Great pictures of Bobby and Maya.
I mailed my card yesterday and I got chills when I was at Hallmark yesterday. (It was Open House, one of the big days for Hallmark regulars.) So I was telling my daughter (who still works there) that I mailed a Christmas Card out.
She said "Mom a woman was in yesterday looking for a card to mail to a boy who was dying from cancer" and I said "it has to be the same boy." I told her the woman must be a blogger. It was so wonderful to know that someone else was mailing one too and I realized that it's a small world with wonderful people all over doing what I was doing.
Noah's story is on cnn.com today. he's gotten truck loads of mail! A woman I work with is friends w/ his grandmother and I sent a card before I saw your blog. It just brings tears to my eyes.
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