4 Days Old

12pm

Alexandria has had a fairly good 30+ hours.  She didn’t have any respiratory/cardiac incidents from Monday morning 6am until about 1pm today.  She did stop eating the amounts she had been, but that has picked up a bit in the last 10 hours or so.   I gave her her first at-home bath this morning, which did not make her happy.  Gabe helped, and he’s continually asking if her belly button (which has not fallen off yet) is her pee pee.  We’ve explained several times that it’s her belly button and that they all look like that when you’re very young, but he’s convinced it’s her pee pee (especially since no other pee pee is present).  “Girls don’t have pee pee’s” has no effect.  I said last night, “It’s her belly button and after a little while it’ll fall off”, which I immediately regretted, because Kim and I can both envision him witnessing it falling off and the inevitable panic of him thinking his own pee pee may fall off.  Not looking forward to that conversation.

She has been very calm and not as active the last two days, but seems fairly normal behavior for a newborn.  Mary (RN) from Hospice came by with Cheryl (Hospice Clergy) this morning to check her out.  She isn’t dehydrated (a concern we had because of the spaces forming in the plates of her head).  The spacing is normal, she is properly hydrated.   She seems to be doing so well.  Kim asked if this was the “compensation” time we talked about in the hospital and Mary said yes.  I trust her judgment, but my heart just keeps telling me that she’ll defy all the odds, that she’ll be fine.  I know the odds are against that.  I know they tell me that it’s normal to feel that way.  But they are very clear that her episodes will return, and that she won’t be with us.  It is so hard to accept.  I just hope we get more time.

2:30pm

Dawn, our hospice social worker, just came by and met with us.  She’s begun preparing us for when Alex does pass, and asked us to consider what we would do concerning the boys if she passes in the night.  Do we wake them, do we tell them in the morning after she’s been taken away.  We think we’ll wake Gabe up, that he’ll need to see her and understand.  Aden won’t understand in this setting, but probably will at the funeral home, if he sees her in the casket and we’re telling her goodbye.  Not sure exactly what we’ll do, praying God will give us the understanding, guidance, and knowledge on how to help them understand without traumatizing them.

4pm

Aden’s sick.  Gretta and Harry took him and Gabriel to the park while Dawn was here and he laid down on one of the playground equipment and didn’t want to move.  (behavior we’ve seen before when he’s sick)  He later pooped his pants at Meijer, another past indication of being sick.  He’s resting in his room.  “When it rains it pours” my mother always said.

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Our church and some of our neighbors have been incredible, being us meals, etc.  Harry and Gretta have been great caring for the boys this past week, please pray they have a safe trip home to Midland tomorrow.  Thank you again to everyone.  Photo I took this afternoon: