Monday, May 6, 2013

The Battle Forges on...

Tatum Update:  Well, I am trying to remain hopeful, (it is Tatum's middle name) but on Saturday night Tatum woke up at 2:30 am and was super gurgly and having trouble keeping her oxygen levels up!  Grrrr.   I was so sad and frustrated.  I was so encouraged by the day before that I was just sure that maybe we had found a solution.  Now, maybe not.  I couldn't bring myself to write yesterday because I was severely sleep deprived because she stayed up from 2:30 am until about 10:30 am after we had already gone to church.  I sat out in the hall with her and got her to finally rest.  She was pretty gurgly almost the entire time.  I was feeling pretty sorry for myself, but I was really glad that we went to Stake Conference.  It was great, as usual, lots about the family and building a stronger home and missionary work.  We went to the adult session on Saturday because we love that one because we can actually listen because there are no children!!  Sorry kids, but you are often a distraction.  The Sunday session is sometimes a little harder, but this one was great.  I just figured out why as I was typing.  Because I sat out in the hall with Tatum!  Baha.  It just came together for me.   Well, I needed it so I won't feel guilty for putting Lance in charge of the others:)  While I was sitting out there one of Halea's friends little sister walked by us.  She did a double take and then she came back and approached us. (She hasn't ever really met us, but I knew who she was)  She asked me if I was Halea Walker's mom.  I smiled and said Yes.  Then she said is this Tatum?  I said yes.  Then she asked how she was doing.  What a cutie.  She is only about 12 years old!  She has had her own challenges in life with her health and so I could see in her eyes that she got it.   Tatum is like a little ambassador.  I love that people are following her story so that more people can benefit from her life.
Things were well until a lady came out and sat on a chair kind of close to where I was sitting with Tates.   She started with some small talk and then started asking how old Tatum was, and if she had a feeding tube.  I really wasn't in the mood to share because I just felt emotionally and physically drained.  She proceeded to tell me the story of her daughter who is now 9 that needed a feeding tube when she was little because she wasn't growing, etc.  I wanted to tell her that my daughter would never see 9 years, but I held back and kept the conversation light and on the surface because I knew that she was well intended in sharing her story.  I am sure she was just trying to make me feel better.  I wish that I had taken the opportunity to share more of Tatum with her, but I just couldn't at that time.  I will do better next time.
I love miracle stories because I know that they happen and I fully understand that our story is a miracle in a different way.  I only wish that we could keep Tatum a little longer than I think that we will.  I wish that we had years with her, but I just don't think that will happen.  I feel her little body just wearing out.  She is getting so tired so fast.  I wish that I could give her some of my energy.  Such an irony that she has a mother that is hard to turn off.  Why can't I just share some of my energy!  Life.
Tatum has several new outfits, again!  Thought I would share some of those.
I love her profile with the little bit of sun coming through the window.  She looked so pretty in her cute bright dress.  She wore this on Sunday, it was super comfortable for her.
 Full length picture of her hanging out in her "bedroom" which used to be our living room:)  So glad that she is there so that she can be a part of our chaos at all times!  Hopefully she enjoys it as much as we do.
New pedicure for the perfect toes!
Can you tell this is my favorite angle?  I love her profile.
 This is her today.  She looks so pretty in this little dress.  My friend brought her and Hilary matching ones, just different colors.  They look adorable!  If I can catch Hilary today i will post hers too.
Minus Oxygen.  Our beautiful girl.  I love first thing in the morning after her bath and she looks all fresh.

So, we are trying to be hopeful about the Botox, but this might just be how Tatum is.  This just might be her forever issue, secretions!  I told Trevin that he couldn't die from a bowel obstruction, and he did.  Now Tatum will not breathe like I want her to.  How come none of my kids will ever listen to me!?  Right down to the angel babies.  I understand the teenagers giving me grief, they have no brain!  I was just hopeful that I would have a little more pull with these little ones.  (I hope you can sense the sarcasm)  I am just going to try to go with the flow, and sleep when I can, and deal with secretions if that is what we need to do.  The goal is to just keep Tater bug comfortable.


  1. Tatum looks absolutely beautiful! There are just times Heather when it is too emotionally draining to share, and that is okay. When I shared with our ward, what was happening with Ryker (way back in 2007) I had two women come up to me, sharing stories about their baby's murmur or small opening in the heart, that had closed. I wanted to laugh, and cry, and yell at them. How wonderful it would have been to have only needed Ryker to have grown out of a murmur or have a hole close, but this little boy was missing the most important part of his heart: the entire left side. And they would never witness the things we saw, the suffering of precious babies, most especially my own. I often turn to the song "Consider the lilies", and the part of the song: "consider the sweet gentle children, who must suffer, on this earth." While I know this song is a literal for you and I, in regards to our children, I also know it applies to you Heather. You are Heavenly Father's child, and you suffer, as you watch your precious babes fight so valiantly in bodies that cannot contain the Celestial spirits you love so dearly, too sick to stay. It becomes excruciating at times, almost suffocating the feelings of it all, true suffering beyond the comprehension of most. You are a strong and wonderful mother, and I know with all my heart, that no matter how long Tatum has on this earth, you will always be the one who has loved her and known her best, and has given her the amazing blessing of life. (((Hugs)))

  2. I just want you to know you're in my prayers. Sending much love and tears.

  3. Heather, you are so amazing! Not only are you being so faithful and strong through all of this but you are inspiring all of us as well to do better in our lives no matter what the challenge may be. Emily LOVED seeing you on Sunday. She talked about it all afternoon..."Tatum is so adorable mom!" She checks your blog as often as I do! We love you