Day 32

Hailey is doing well, which is no small miracle. Last week we were talking about putting her on ECMO or having to put in a trach and this week we are on the 3rd floor and she is on 1/4 liter of oxygen down from 8 liters 2 days ago. That kind of progress is nothing short of miraculous. I credit Heavenly Father and the faith and prayers and thoughts of so many of our dear friends and family. We are so grateful for the amazing progress she has made.

This was a wonderful weekend! I hope that none of what I share will come across as boasting in our good fortune, but as what I mean it be, which is a moment of rejoicing in the kindness and generosity of so many and the tender mercies of our Heavenly Father in giving us exactly what we need when we need it.

First of all, earlier this week, Ben's boss and his family told us they are going to give us half of the pig they usually butcher around this time of year, which will be wonderful and we are so excited about.

Then, one of our good friends from our ward asked us about having a Christmas tree down here so that we have one in our room at the RMH and so that the girls could have the experience of decorating the tree with me since we didn't get to do that together last year (I was in California). There were a lot of neat circumstances surrounding this tree coming together. I hope those involved will not mind my sharing them. The sisters of this wonderful person in our ward had a tree and some oranaments that were beautifully hand painted in all the cute girly pinks and blues of a tree just perfect for girls.  Then, the sister in our ward also sent ornaments, which she had made by hand with all the names of Jesus from the scriptures.  Unbeknowst to her, I had looked at some similar ornaments 3 or 4 times this year and longed to buy them, but hadn't.  It all came together into a beautiful tree. Abby and Katelyn and I spent a couple of hours putting the tree together, separating the branches, and decorating it with all the precious ornaments. It was a little piece of Heaven on Earth just decorating the tree with the girls. They were thrilled to get that chance and didn't even want to leave our room for a few hours once it was finished.

On Friday morning I was headed out of the Ronald McDonald House to catch the morning rounds with the doctors and I happened to ask the lady at the front desk about some event the Ronald McDonald House was hosting. Just before I went to leave, she asked if I was doing anything the next night. I told her that Iwasn't. She asked if I would like to go to a Jazz game and if I had anyone to go with and I said yes.  She gave me tickets to the Jazz game, which some kind person had donated. These were very nice seats and also included a buffet meal prior to the game and snacks at half time. I thought I would surprise Ben with a date to the game. I texted my wonderful aunt and uncle who live about 45 min away to see if they might be able to take the girls for a few hours Saturday night while we went to the game.  They readily agreed and even came halfway here to meet us coming and going so we wouldn't have to drive so far. I think I may have skipped all the way from the parking lot into the hospital (okay maybe not on the outside, but inside I was skipping) When Ben arrrived on Friday I surprised him with the tickets! He was SO excited!  We went to the game, which turned out to be a very exciting game. It ended up going into overtime and the Jazz won by a point or two (uh terrible that I can't remember the actual score---inserting apologies to all the sports fans here). I practically yelled myself hoarse. It was a grand memory we will never forget.

Saturday morning some wonderful people came to serve breakfast at the Ronald McDonald House. As we walked in for breakfast, they handed every family a $20 gift card for gas, gift bags with fun little toys and chapstick for the kids, a blanket for the baby at the hospital, and a family gift bag with a game, treats, and a movie. The family members were all wearing t-shirts that said "Berlyn Smith" on them. I asked about their story and they told me that Berlyn was born in April of 2014 and passed away about 2 months later. Her family had planned this wonderful event to honor her.  I cried talking to the lady that told me about her because that means she would have been about Hailey's age. It touched me so much that this family turned their tradgedy into serving others. I cannot even say how many times we have been served a meal or given gifts or received kindness in some way from people who have lost their children. It amazes and moves me. 

People are so kind and so generous and so many of them turn their sorrow into something words cannot describe. I hope I can ever do as much for someone as these people do. I can't even begin to explain what I feel having been the recipient of so much kindness. It is humbling. Every time we receive kindness or service, or gifts, or expressions of love, or offers to pray for our family, I just want to fall to my knees and thank my Heavenly Father for the goodness of those around us. We have so much to be grateful for.

I can't really explain what it is like to spend months in a hospital. You see people in the hardest struggles of their lives. Just in the last week, I overheard one parent talking on the phone in the PICU about how their child's brain had been without oxygen too long and their plans for organ donation. I met parents whose 16 year old daughter contracted spinal meningitis as a newborn. She doesn't talk or walk but they adore her and she adores them. They are here for complications of an illness and now she is on dialysis. I met parents whose child has had seizures all his life and finally agreed to have surgery to separate the halves of his brain in hopes that will stop the terrible seizures, parents whose children will not live more than just a few years and who care for them courageously, parents whose children are battling cancer. Every day I meet someone who has another monumental challenge and is struggling through it. And every day I am amazed at the strength and courage I find in these wonderful people. It really puts life and our struggles with Hailey into perspective.

Well, enough of the musings of this mom. I hope I haven't rambled too much, but I couldn't help but share the good news of all the wonderful things that have happened in the last few days and the courage I see all around me. It is inspiring. Well, goodnight for now.

P.S. I'm including a few pics of our room at the RMH. They aren't amazing pictures, but I wanted to show how nice it is! It really is a wonderful place!