My fear is that, after reading the following entries, you might leave either 1) depressed 2) miserable 3) glum or 4) despondent. The reason? The following entries (and those that will be coming) have a way of being like a field of thorny flowers...there is a lot of "Pretty", but there is also a lot of "Ow."
I love you people and I understand your hearts are sacred places and I want to tread lightly. And so I have censored some of the story, and altered or shortened some descriptions. If you choose to keep reading, I COMMAND you to hear the Good, the Love, the Learning, the Humbling, the Joy, the I'll-Never-Forget-Because-I-Don't-Want-Tos in the memories as well.
My other fear is that you might think we are exceptionally strong people. We are not. Since I was a little girl, my greatest fear has been losing a loved one. When we found out we were pregnant (before we knew about Hope's condition) I said I would go crazy if I ever lost a child. Tyler may debate that fact--he would say the crazy thing happened long before we met--but here we are on the other side and we are ok. It's not because we are awesome. It's because you can do a lot more than you think you can do. You can do even more, if you let the Lord on your team.
And so here it is.
Remember what you are supposed to do?
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October 10, 2011:
Today was bittersweet.
It was not raining so Caeli came outside with Hope again. Before we arrived, Caeli was able to get Hope to take about 3 ml of breast milk (pumped) by a syringe a tenth of a ml at a time...We became very excited and started talking about dreams of Hope growing older and walking and talking and playing with her cousins and snowboarding.
Caeli showed her sisters how thin Hope has become and some reality set in...
At dinner everyone went home except me. A few minutes later Caeli and Tyler's friend who happens to be the charge nurse in the emergency room at the big hospital downtown came by. She had a little donut pillow she made for Hope to allow her to lie on her back without twisting her head to one side. The encephalocele fits in the hole and they just make a ramp with burp rags up to the donut to support Hope's back. She also gave Hope an exam and verified that she is quite emaciated and dehydrated, but since her diapers are still wet it means her kidneys have not shut down and she still has a functional amount of fluid.
She also told them of symptoms that may be yet to come--further dehydration, kidneys shutting down, and contracted breathing. She explained that oxycodone (the drug Hospice had left for them) is a painkiller that is also a suppressant and if they use it when she may seem to be in pain with contracted breathing it will have the added effect of reducing her breathing, perhaps hastening her death. They will have to decide if they want her to suffer a bit and live a few hours longer or if they want her to go sooner but peacefully.
This knowledge was unbearable for Caeli and she is praying it will not come to that.
I fasted for Hope and her parents today. I prayed that they will know what to do when, have the strength they need, and feel peace in their hearts...
11 October, 2011:
Today I had to work for the University most of the day, so I did not get to see Hope until about 7pm. Unlike yesterday, Hope did not take any milk today. Caeli said she is living on love. She changed two wet diapers. I was there when she changed the second one and Caeli started crying a lot... Tyler came in and hugged Caeli telling her positive things and using humor to cheer her up. He is so good the way he helps Caeli, even through his own pain. Hope had her eyes open most of the time I was there today and she smiled a lot, too. She responds a lot to her parents.
Today is Tyler's father's birthday. Happy birthday, Grandpa Bob! It is also Lily's birthday. Happy birthday, Lily! Yesterday was Ben's birthday. Happy birthday, Ben! Wednesday will be Rusty's birthday. Happy birthday, Rusty! Next week is Dale's birthday. Happy birthday, Dale! Did I miss anyone?
October 12, 2011:
Hope has still not eaten anything substantial for over a week now and yesterday her color seemed to look a bit more ashen. (It could have just been the lighting...) Caeli...tried several times to feed her some milk with the syringe, but she would not take it and even seemed to have difficulty swallowing. Nevertheless, she continues to open her eyes and smile and she has made some little sounds with her adorable girly voice a couple times.
Every now and then she seems to be in pain and she gets a bit of oxycodone. She only got it maybe once or twice yesterday, so she is in general very peaceful.
Caeli and Tyler have been reading about life after death and in particular for babies. They have found great comfort in doctrines that teach that they will be able to raise Hope in the eternities. For those of you who are not LDS, we believe that we can be re-united as families after death and the temple marriage (or 'sealing') seals Hope to them and to the rest of their family as well...this beautiful doctrine helps us in times like this and gives us something to look forward to...
October 14, 2011:
Thom and I got to hold Hope yesterday! What an honor to be able to hold such an angel!...No words can express the feeling of holiness to be so close to such a divine spirit. Hope slept at first, but then she opened her eyes and we gazed at each other for a very long time (until it was Thom's turn).
Hope spent most of the rest of the evening with her eyes opened, telling us of her love through her eyes.
Earlier in the afternoon, we drove up to Guardsman's Pass, past Solitude and Brighton and up to a lookout just before the road turns to dirt on its way to Park City. When we got out of the car the smell of evergreens was amazingly strong. Hope was able to breathe in that beautiful smell and the crisp mountain air.
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| Guardsman's Pass with Hope and Tyler |
Tyler and Cedar threw snowballs down the steep slope to see how far they could get. It was fun to see how far they glided through the air.
In the early evening Joe, the Hospice nurse, came by and listened to Hope's heart and breathing. Her heart rate speeds and slows with her breathing, but averages 110, which is slow for her age (should be around 140). He gave Caeli the stethoscope so that she could hear Hope's heart.
As Thom and I were about to leave, Tyler's parents arrived from Idaho. They came bearing gifts. They brought some kind of soup that Tyler's mom makes and Caeli loves. They also brought two wrapped packages. As soon as Caeli started to unwrap the first package we knew what it was and we started to laugh and Tyler started to fein scowling at his mother. If you have read Caeli's blog you will see that Tyler does not like spending money on expensive "faceless Willow Tree figurines." Tyler's mom found one that is called "Angel of Hope" and had to get it. It is an angel holding a candle in her hands up high to light the way. The second gift was another faceless Willow Tree figurine of a father and mother holding their baby. The baby had a little beeny hat much like the little strawberry hat that Julia made for Hope and Hope wore for her pictures.
I love Hope so much. I am so thankful that Caeli and Tyler were brave enough to have her.
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Here is a little montage of Hope's first two weeks.
The music in the background is called "Blessings" by Laura Story and was not randomly chosen.
What I mean is, I couldn't say it better myself.
Love, C
1 comment:
Beautiful, thanks for sharing. How wonderful to know we are related to such a special spirit.
Jill
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