February 6, 2011

Dear family,

First of all, we would like to say thank you for every thought, prayer, phone call, email, text, visit, card, and flower.They always seem to come at the right time. Right when we need the extra boost to make it through the next day. I know some emails went out asking for a family fast. We want to say thank you to everyone who is/has fasted for Jaela. She has a tough road ahead of her. We know she is a valiant and chosen daughter of God who was given a special task in this life. She was strong enough to tell Heavenly Father that she could do this when the rest of us weren't. She has such a special spirit about her and we know she is still close to heaven.

A couple days ago I got an email from my cousin Stephanie. Her aunt on the other side of the family is President Monson's secretary. She had put our sweet baby Jaela's name on the special prayer role of the First Presidency and Quorum of the Twelve Apostles. Her name was read aloud in the sacred meeting they hold in the temple. We also got an email from Jeremy's cousin. His five year old son said a special prayer for Jaela as well. I believe that Heavenly Father hears and answers the sweet, sincere, and heart-felt prayers of a child as much as those of the First Presidency. I know that she feels every prayer said for her. Her little body has to fight and overcome so much and it only does her good when we call down the powers of heaven to help her.

One of my aunts suggested to start a blog to keep everyone updated and I thought "why didn't I think of that." So we're going to get this started by telling what we know and answering some questions we've been asked. And if anyone has a question that we haven't answered, please ask. I'm not sure what people want to know so I'll just keep writing til I run out of words.

When I was 20 weeks pregnant we went in to find out if we were having a boy or girl. We were told something looked wrong with her legs. We were referred to a specialist that we saw once a month for the rest of the pregnancy. They said she may have something called skeletal dysplasia which just means that the long bones in her body would be a little bit short. Well about a day after our baby girl was born they told us that she has osteogenesis imperfecta. That means that her bones are very fragile and break easily. They took an x-ray of her and most of the bones in her limbs were broken, some of her ribs were broken, a collar bone was broken, one of her hips was possibly dislocated, and she had fractures in her skull. Some of them were healed enough that the suspect they were broken before she was born. Most of them were probably broken during delivery, and some possibly a little bit after before we knew she was so fragile. Baby bones take about ten days to heal so she's mostly healed now and in a lot less pain. She's been getting a dose of Tylenol or Morphine every three hours to manage the pain.

We found out on Friday that she has hypothyroidism. She'll have to be on medication for the rest of her life to manage it. On Saturday she start throwing up most of her food. And I don't mean she just spit up a lot, she was throwing up. We got a phone call from the hospital Sunday morning. Her doctor said that she continued to throw up through the night and she'd had a bloody stool so they stopped feeding her completely (she eats through a feeding tube in her nose) and they put and IV back in to give her the morphine and thyroid medication as well as a glucose solution to keep her hydrated and her blood sugar at a good level. They are running test to see what might be causing all the problems. It may just be a virus that has to work itself out or if it's something wrong with her bowels.

Jaela has to eat four full feeding by mouth before they let her leave, and if she won't she may have to have a (sort-of) permanent feeding tube in her side. I get really frustrated with this because they expect her to complete a feeding in twenty minutes, but they feed her so much through the tube in her nose that she can't absorb it fast enough and they have to give it to her over an hour so she doesn't spit it back up. I feel like they're asking her to do the impossible. We did talk to the nurse practitioner today and she was more willing to work with us and be more negotiable about the feedings and the permanent line. She said it's possible to send her home with the tube through her nose so we could still work on nursing or bottle feeding, but at our own pace, and make sure she still gets the amount of food she needs.

Once she's released from the U we'll get her into Schreiners Hospital where they'll do treatments. The U is just trying to get her stable enough to pass her off. But that's ok, we haven't been too impressed with some of stuff that has happened at the U (like when we showed up in the morning and she'd thrown up in the night and no one had bothered to wipe it up and she was just left to lay in it). We've been given names of some specialized pediatricians in Logan so we can get her some care there as well.

Here are answers to some questions we've been asked.
Do we have any sort of routine/schedule?
Jeremy and I get the hospital between 11 and 12 and stay til about 6:30. We're staying at my parents house in West Valley while we're here. When we're at the hospital we hold Jaela, or wash her hair, or work on getting her to eat.

Do my parents go to the hospital every day?
Jeremy's parents visited on Saturday, and my parents come up for about an hour on Sunday. We do get an occasional visitor during the week, but mostly it's just the three of us.

When does Jeremy have to go back to work?
Jeremy's work knew that he may have to be gone for a while and have been really good to work with him. He's used all his vacation and sick hours, but he filled out paper work for FMLA (family medical leave act) where he can take up to 12 weeks off (without pay of course) and still keep his job. He'll stay in Salt Lake with us til we can take our baby home.

Well that's all I can think of for now. We'll try and update this once a day, even if it's just "everything is the same." And please ask questions if you have them. We don't know what people want to know, but we're willing to share what we know and answer any questions.