We got out to the grocery store this morning, and both Rinnah (age 6) and Evania (age 3.5) asked if they could use some of their money from Oma to buy a pack of gum. Sure. But then the first thing they did when they got home was to dump all the gum out into another container so they had their own BiPAP machines for their own babies.
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I suppose I should let all of you know how our real patient is doing, too, huh?
Well, she's still in the PICU, and still using her BiPAP machine, though was able to spend some good hours today with just the nose mask instead of the nose and mouth mask. She is down to 30% oxygen being supplied to her (down from 40% at the beginning of the week, and normal air is 21%) and her lung x-ray again today looked just a little bit better. The doctor was pretty excited for Dad to see her x-ray this morning! The right side looks almost perfectly clear, and the left still has more to go, but compared to the initial image from admission, there is obvious improvement.
We're planning on spending the next week in the hospital. It continues to be the smoothest hospital stay we've had because of our decision to purchase Matt a laptop computer that is sturdy enough to handle his work software, so he's able to be the one at the hospital AND still be getting some of his work done. It's not everything he'd like to be doing, but it's something, and it's more than during Mira's previous stays when I was at the hospital so he could be home working...and caring for the other eight children!!!
We are grateful for things like the promise of a meal for this Thursday that was made weeks ago before we had any idea Mira would be in the hospital, and for our pastor who ran out to the store Saturday night when we were totally out of milk...and apples...and tomatoes. And Randy and Steph - so many pieces of our Thanksgiving meal were rounded out by the freezer items you left with us earlier this fall! Yummy fresh corn, peeled and sliced apples to quick put together a pie, pickles, and I thought there was something else, too.
These times when our family is not together are tough, but every day we're glad that Mira is here with a scattered family rather than alone. Even though Mira, with her severely limited access to her world, may not necessarily know that her Daddy is there, everybody caring for her knows her Daddy is there. I know she would get great care there at Gillette regardless of her situation, but still - as an orphan she had no advocate, no one who would say something if the level of care she received was anything less than the best. Now she does have an advocate - a Daddy who loves her and knows her and who spends most of his day at her side (except for the few hours every day when he comes home for the rest of us! Gloria at bed tonight, with both of us there, was happily saying, "Daddy-Mommy. Home. Daddy-Mommy. Home." We all like having Daddy around!!)
I was just thinking this week how wonderful it is that little Tsveti now has parents noticing her. Noticing. The absolute bare minimum of care any child should expect, but something she went without for so long.
ReplyDeleteYou are doing a wonderful job with her (obviously infinitely more care than simply noticing).
I also never considered what a gift it is to typical children to have special needs siblings. I follow and support many SN mamas with kids from Mira's country (I am in Australia & we cannot adopt SN kids ��)and I did not want to admit it to myself - but sometimes I wondered if their biological typical children's needs were being met as well as they should be.
But this is so far from being the case. Your girls show such compassion to their brothers and sisters. I only have one child and he is very sensitive. I think he would be intimidated by Mira and he tends to take on other's suffering and he would be upset worrying she was in discomfort or pain.
I have a question that I hope is not too personal and as a follower of your blog I know you are one of the busiest mums ever, but do you think as Mira gets stronger and healthier, you may try some basic tactile signing with her?
Emily - Adelaide, Australia
Emily - great question about the tactile signing. We ARE doing just a very bare-bones version of it. When we give her a bath, we'll tap three fingers three times where we're going to pour the water. When I'm snuggling with her, I'll tap under her chin twice (an adaptation of "mother"). Daddy has a similar signal he will use with her sometimes, too. We will touch twice next to her mouth before we suction or brush teeth - we're suspicious that she's figured that one out because she'll often respond by clamping her teeth shut. ;)
DeleteIt's a great question, though, and even as I'm sitting here responding to you with Matt watching over my shoulder, he's thinking of another routine task (hair brushing) that she would probably like to be alerted to before it happens. Who knows how much she'll take in, but knowing that's our only way "in" we're trying to use it where it counts!
That's terrific Andrea! Thank you for replying.
DeleteI too think some simple alerts will be helpful for her after those years of no warning for that one rough diaper change a day.... but the proof is in the pudding- this little one is relaxing more and more before our eyes.
The 'vesting smiles' are further proof she has realised she is in a gentle and loving place. Your husband's devotion to his little princess is so beautiful. All those years alone and God was preparing the perfect nest for this vulnerable baby girl. I am so glad she is home and that there are people like you and Matt who say YES.
Emily :)