Monday, March 8, 2010

Sadness and gratitude.

I am so grateful to be home. I am so grateful to have Mallorie home WITH me, and to be able to bring her into our bed last night, to allow for frequent position adjustments to keep her airway open, and to better judge her level of comfort and know when she was cold. I love being able to decide (AS IF I KNOW) when to try moving the doses of the med that calms agitation closer together, and when to space them out more. Basically, I am grateful for the chance to try to get a handle on the timing of meds and feedings, instead of depending on others to manage all of that. Mallorie is on more meds than ever, and the continuous feedings are not so workable at home. And she has lost weight and seems so thin, so I started thinking while awake during the night last night, that I wanted to start adding some pureed meat to her feedings, and oil, and things like that.

But I'm also sad and frightened right now. During Mallorie's hospitalization, I was the one who kept telling the doctors and nurses that I saw daily small changes in her, and that I believed she would "come back," after awhile. I got that from one of the neurology residents, Dr. Tran, who would point out positive changes to me EVERY time he came in, and say, "See? This changed (she was not having the obvious seizures anymore, or she was showing an ability to breathe with less support, or not running a fever)... That's a good change, right?" And I would have to agree. Once he said, "Her improvement may not be happening in leaps and bounds, but she is still improving."

So I took that from him, and internalized it. I would say to myself and to anyone who asked how I thought she was doing, that she is improving, and that she will recover, but just not necessarily overnight. I would say it to John and to the kids, too. No one ever disagreed with me at the hospital; Hannah and John did try to express doubt, but what was the point? Only time will tell. And I would say that if Mallorie had a broken leg (well, and if she walked), no one would expect her to put weight on the leg for a long while or to walk on it. She would be expected to rest the leg so the bone could fully recover. So I wanted most of all for Mallorie to be allowed to rest, so her brain could have the best chance to heal. Rest and a peaceful environment were hard to come by in a 2-bed PICU room filled with 3 beds, and family members and 3 times the number of people coming in and out of the room on rounds and for medications and respiratory treatments. The best day was when Dr. N, a PICU attending, finally wrote an order to give Ativan at once, instead of just "give PRN" so that the next doctor could come around and undo the order. And she got almost immediate relief, as the Ativan went into her IV line. And then when Mal's new neurologist said she should continue with something like that at home, I felt the weight of having to fight for her being lifted from my shoulders.

But coming home has been hard. Not all our meds were available, although the prescriptions had been faxed to the pharmacy a day early, and we have had to scramble to find elsewhere those which weren't compounded meds, and to wait until this evening to get ones that were. And she still doesn't recognize us or respond to us. She doesn't smile. For so long I feel like I'm the one who has been telling everyone that she will be the same, eventually, but just needs more time, but tonight I am the one who is crying and don't want the other kids to know. I truly believe that it wouldn't be a surprise at all for God to accomplish this. But each day that goes by without this happening, and being home with her like this, makes it all harder to be so sure.

I might as well say it right here: I don't need anyone to tell me I just don't have enough faith. I came across some printouts of emails I had sent out 2 years ago, while Mallorie was in the same PICU, and I was so worn-down. Even then, as bad and hopeless as it might have looked at times, God answered prayers for Mallorie, and protected her from unnecessary procedures that were being suggested to her. But this sentence that I had written 2 years ago really jumped out at me this time:

And she smiled in her sleep a few times just before we were heading off to go to sleep ... the first smiles we'd seen since surgery! That is the part I am missing today. This sweet smile, that we have all over our cell phones, our computer desktops, and that all of us keep sneaking peaks at.

(These are unfortunately all from my phone, as our house is a wreck and I only have time to take a short break to do this post.)

There are some children whose lives I follow through blogs who have lost some of the abilities they once had through events that happened during hospital stays, through errors. Even if mistakes happen, if you believe that those caring for your child listened, and really acted as if they believed your child mattered, you might cope better than if you think someone just would not listen or care. I am grateful to not have those emotions to deal with, as I know Mallorie received good care. It might have felt like a fight sometimes, but people listened. But I do understand better, today, the grieving that comes from having to cope with such changes in a child. How I pray that these losses are reversed for Mallorie, and that she smiles AT ME soon. But I understand a little more.


ANewKindOfPerfect said...

I hope that Mallorie is still in recovery mode. I pray that she smiles AT you, and soon. ((hugs)) I can only imagine how hard this is for you. Crossing my fingers that we get to see some new smiling Mallorie pictures quickly!

poolja said...

Oh Connie, I am sorry for how rough things are still right now. I hope and pray Mallorie will be smiling again soon! I also pray that you will see and feel God's care and compassion for you especially right now!

Jessica mommy to Alex/ RTS said...

Coming hom to the stillness, to the "what used to be" home is where we want to be but home can also shine a light on our reality. I remember thinking when Alex was in the nicu, if we can just go home.......Then we came home and realiy hit,and hit hard. Im so hopeful you will get that smile back, that rest will heal her. You are so on my heart friend.

Cathy said...

I am praying for you Connie. For your rest, can't imagine how exhuasted you are. Even though coming home is great, so much to do upon returning. You gave me some great advice last month and told me to quit reading the blogs that caused me to worry. Like you I won't quit reading the blogs, but what it does is that it put reality right in our face. No, it may not be what ultimately happens to our child or it may happen, but they will still be ours. As you just texted me to say you are downstairs I am praying!

The VW's said...

And, what a sweet, sweet smile! I pray that you see that smile again!

I do know what it is like to not see a smile from your child for a very long time and to know that it was taken from you due to a mistake that was done because people didn't listen to you. And, it stinks!

I also know what it is like to see that precious smile again! I seriously thought that I would never see Gavin's smile again and I thought that he would never "come back to us." It took some time, but it's back!

I will be thinking of you and praying LOTS! My heart breaks thinking of the emotions that you are going through! I truly understand, because I have been there!

I recently was talking to someone about the fact that sometimes we just don't have it in us to pray or trust that things will turn out alright. But, the wonderful thing is...Jesus knows our heart and our needs and He intercedes for us when we can't do it for ourselves! He understands, having suffered Himself, and He is here on your behalf. Keep faith in this and know that it is not up to you.

You need to just focus on loving your sweet girl, taking care of her and yourself and trying to find the good things in each day.

May God give you peace, strength, hope and grace as you go through your days! I'll be praying! Love and Hugs!!!

Jacquie said...

I also am one who hides my tears and puts on the smile for everyone else. It almost feels like if I also verbalize doubts or stress the whole sand castle will crumble. I read of other couples/families who have "open discussions" and wonder. I guess I worry if I let the tears fall with my husband, they'll just keep falling. I rationalize that keeping the bridge of positive thinking between us makes us both have to be stronger.
I doubt I have it right.... but like always... I have a plan and I'm sticking to it.

Laurie in Ca. said...

I love you and Mallorie and am praying you through this very uncertain time. I am asking God for a complete healing from this setback and for you to see her precious smile again. My heart breaks for all of you as you wait for her to show she recognizes you. I know in her heart she does as she feels the familiar love of family. Rest and heal sweet Mallorie. I love you.

Love and Hugs, Laurie

Finding Normal said...

I'm still praying for you. All of you. I hope you get to see that smile soon. Each day has been a gift, and each day will continue to be a gift. Try to see the bow on top, even in the current situation.

May said...

I can imagine how you miss that smile. I guess with our kids it's just part of the journey, getting worse, getting better, with no certainties. It's so hard but it's the path we've been chosen for. Praying for your strength to ride through her recovery.

victor n ada negrete said...

We prayed for mal to get better n go home. We R the Negrete Family our daughter Michelle is 8yrs. old with trisomy 18 Thank the Lord. Any advice we can give u we r here to help. There is milk with more calories.

kim said...

I'm praying for a smile from sweet Mallorie to her precious Mommy. Connie, you and your amazing girl continue to grip my heart. I will continue to pray for healing and strength.
Love you,