Sunday, February 21, 2010


Still breathing through a tube in her throat, on a vent. Not needing the vent to do the breaths - she is doing her own breathing - but still getting oxygen and still has the tube, because Mallorie is not back to herself. She is not aware of me, not responding as if we are messing with her, and doesn't seem to have a gag reflex yet. Tomorrow she will get an MRI to check her brain.

I didn't get to sleep till after 1 am last night, so I started out tired and low, and learned when I came back to her room that her IV that I loved so much (in her arm) was out, and they had stopped her milk because her belly was distended. There was a new IV in her scalp, courtesy of Tony who, like Ida, isn't a believer in cutting hair. Crazy guy. But because of this, the plan is still on to have her get that PIC line (an IV that starts somewhere like an arm or leg, but the end is closer to the heart) on Tuesday, after all. I had been hoping that we'd get closer to Tuesday and they would be happy with the arm IV and decide she didn't need the other IV.

Rounds had already been done, and I actually, I hoped (and prayed) that the attending doctor I liked so much yesterday, would not come around, after all. Because I didn't want to hear any negative thoughts. She had said something in rounds yesterday about wanting Mallorie to be at her best when the tube comes out, to give her her best shot of being successful coming off the vent. And mumbled something about, "because then we'd have to have a conversation that mom and I don't want to have." Whatever that meant. So I was wanting to avoid any conversations, in case one might be the one "we" don't to have. Around 5 pm, she did come by, even though it almost sounds like she wasn't Mallorie's attending today? She is very nice, and told me to give Mallorie more time to come around, that she might just be sick still. I liked the sound of those words. So we will wait.

The doctor who I think was Mallorie's attending today came by and introduced herself, and we talked about Mallorie. Who she is, who I think she is (because apparently, word around here is that I don't realize she has any "issues"), what I think she has that caused her issues, etc. I don't remember exactly what I said, but I felt as I was talking that I had a chance to speak for her, to let someone know that I believe Mallorie's unique body is not the result of some mistake. At that statement, the doctor said, "Well, something went wrong." I elaborated that still I believe she was made exactly as she was meant to be, and was an intentional creation. When I finished, she said she understood, and that we were on the same page (about Mallorie's value in our lives, and how there are people with disabilities who are simply meant to be here, and are not mistakes). And that she was very glad to have had the chance to meet me, herself. You know, because of all the impression they apparently have about me thinking Mallorie's a "normal child."

I wonder if that is in her NICU stuff, or just the day to day report handed over between doctor groups, about me being the crazy mom in denial? Because I do remember being told the transport team printed out her entire record and read it on the way to come get her.

Well, I called my friend Katha, to get some encouragement, and hear some words about God. And took a shower, and now I'm going to give Mallorie a bath and get some sleep. Cynthia, a respiratory therapist, came by because she doesn't have Mallorie tonight, but wanted to check on her. She listened to my report of the day, said, "All in good time," and told me she would pray for her. Those are the kinds of words I needed to hear today. And I'm going to bow out of the late night dinner parties that happen in the waiting room, stick some ear plugs in my ears, and try to sleep enough to make up tonight.


ANewKindOfPerfect said...

I hope you get some sleep! I do not think by any means that you are in denial of Mallorie's issues. I think that acceptance of them as who she is, is ideal. Do they want you to sit around and complain about her struggles? That would do no good. You are doing great Mama.

I hope she recovers soon. She is taking her time and will do it as she can .. but I hope it's soon.

Krystal said...

I'm praying for all of you.

Finding Normal said...

I'm sorry you're having to have those conversations in the middle of all this. To defend your child and her right to their care, or so it would feel to me. Mallorie is not a mistake, and I hope her team is coming to realize that. You're doing a great job...hang in there. I'm continuing to think of you each day and pray for all of you daily as well. You are not alone.

The VW's said...

Mallorie is a PERFECT work of God! She is here to teach others! She is such a blessing and inspiration! And, her Momma is great too! I am so thankful to have "met" her and you!

My heart is so heavy for you, knowing how you feel as a Momma! The waiting and unknown can be so daunting! I pray that she has a great day today and begins to make great strides in her recovery! Hang in there! You are in my thoughts and prayers!!!

Comfort in suffering:

"Grace to you and peace from God our Father and the Lord Jesus Christ. Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our tribulation, that we may be able to comfort those who are in any trouble, with the comfort with which we ourselves are comforted by God. For as the sufferings of Christ abound in us, so our consolation also abounds through Christ. Now if we are afflicted, it is for your consolation and salvation, which is effective for enduring the same sufferings which we also suffer. Or if we are comforted, it is for your consolation and salvation. And our hope for you is steadfast, because we know that as you are partakers of the sufferings, so also you will partake of the consolation." 2 Corinthians 1:2-7
May God give you strength, peace, grace and hope today and always! Love, Hugs and Prayers!!!

May said...

Hi crazy-mom-in-denial (so funny),

Glad to know you're keeping your sanity and getting some much needed rest.

The last thing we want from doctors on rounds is to be reminded of the "trisomy" story. As if we don't already know by now she's unique!