Sunday, May 26, 2013

Hotel primary children's PICU

Well, here we are, still.  I have not read what I wrote yesterday for the blog, but I will bet that it was not totally coherent.  I apologize for that. We were in the ER with Tates until almost 1:00 so I didn't get to write til close to 2:00am I think. Anyway, excuses excuses!  I can't guarantee that tonight will be any better, but I am at least working off of a 4 hour nap!
Today has been a little crazy.  Tatum's labs have been a little off but it feels like they are settling down a bit.  Her liver function is definitely poor at best.  At this point we are hopeful that she can overcome this bacterial infection in her blood so we can get her home and manage her liver and other health issues at home. This morning she was awake for several hours but she still seemed like she didn't feel quite right. Tonight she has had a few hours where she seemed more comfortable and awake. We even got a few little smiles out of her. She has been such a trooper through
 all of this.   Her doctors seemed optimistic that we could get her home maybe in a   few days.   We have had to have some hard conversations though. We authorized the DNR today which stands for do not resuscitate for those who don't have to know about these things. I really wish that I didn't know about these kinds of things. We had this in place with Trevin and so we knew that we would do the same with Tatum.  It just goes against everything you know and believe and love about being a parent. How can I truly tell someone to not try and save my baby. It just leaves a pit in my stomach.  I can't imagine our lives without her, but I have to start thinking abut it. Last night was the first really big step down that horrible corridor.  I was pretty nervous last night that we might not make it out of here. I am a little more optimistic now.
Lance brought all of the kids up today. That was really hard. I am sure that they can feel that hard things are near. Again as a parent I just want to protect them from the hurt ahead but I know that I can't. I know that peace is readily available to each of us through the atonement and that helps me to know that we will be ok. I just know that this journey is not easy and even harder when you have sweet little people to worry about along the way.

I am so grateful for the amazing staff that has taken care of us these past few days. They have listened to us as parents and i know that they have been more optimistic than their schooling had probably taught them. I am grateful for the visitors and well wishers through facebook and text and for my kids for being so brave to come to this very scary place to see their precious baby sister. I am grateful that people are stepping in and taking care of my responsibilities at home and for church and for work, without complaint. I am grateful for technology that has allowed us to keep family and friends updated on our condition. I am grateful for funny morbid sarcastic nurses that have allowed us to be ourselves and cope and laugh and joke even if it didn't seem appropriate. Yesterday i was not as able to laugh, today I have found a little more of that. It feels good to be able to laugh.  I am especially grateful for my best friend that I get to walk this journey with, again.  Lance has been so fantastic through all of this. Who else could I be laughing with one minute, talking about a funeral the next, crying because we hurt, then finding joy and peace and gratitude in all of it.  We truly compliment one another and we are a pretty great team.  I know that not everyone gets that in life. We are very lucky.

Sorry to bore you with some of these details but this is a journal of my feelings and a record of our time with Tatum.  So grateful for this priceless record of our tender mercies from the Lord and for all of the prayers answered during this time of our lives.
I usually like to be awake while Tatum is awake so that she knows we are here. The nurse just came in and asked if I was ever going to go to bed:).  I guess. Should try. I just don't want to miss a smile or to not be here to help the nurses understand that sometimes she just takes a "break" with breathing just to see if we are paying attention. Or to help them suction her even when she doesn't want to let you through her beautiful teeth:). I love her strong sweet personality. Such an example to me  I will be and live better because of her.


  1. My heart just aches for you. Love you!

  2. You are such an inspiring and beautiful family...inside and out. May the Lord lighten your burdens and comfort you in this great time of need. I love you!

  3. It is so out of the realm of a parent's heart to think about a DNR order. It hurts to be trusted with that kind of decision because there is no good answer to that question. I am so glad you and Lance have each other. I know it seems sappy, but without Chris I absolutely know my family would be too broken after burying two children. Yes, the atone,ent is real. As mortals, we still have to learn to know how it all comes together, though, then learn to do what it takes for the process to work. Having good people who are there through it and learning it and experiencing it with you makes all the difference. I have a hard hard time with the PICU, but I am so grateful it affords us more time to soak in the mortal time we have to share together. It can never be long enough, and especially when it is our child who is at the gates of eternity and waiting for our Father to call her through, too long before we will be at those gates. But you have a good perspective. I am grateful you've allowed us to be part of the time you do have together. I feel like a thief intruding, but am glad for a chance at trying to be some help while feeling the sweetness of Tatum's presence as well.

  4. Praying for you and the family as well as for Tatum.....we love you all so much and I am so sorry you are going through this again. ((HUGS))