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Showing posts from August, 2009

Homeward Bound

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Once again, I am just amazed at the progress Trinity is making. Highlights for today include rolling over to her tummy, pulling her knees up under her, sitting up from a reclined position, moving her head side-to-side without crying and reading. Okay, she's not reading quite yet but at the pace she's going I won't be surprised if she's doing this by the end of the week! She had another MRI today to compare to the one she had last Monday and this showed much less brain swelling and no new changes. We're going to see the ophthamologist tomorrow and then we should be coming home. I think I'm finally feeling tired so I think I'll keep this update short in words and let the pictures speak for themselves.




It's now been 11 days since Trinity was taken by ambulance to the ER in Baker. It seems like a lot longer than that. We are encouraged again and again by God's word and your support. God is good and we know that this is all part of His plan. Thank you f…

Drum roll please...

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It has been another great day here at St. Lukes! Each time Trinity wakes from a nap it seems she's doing something new. This morning, it was grabbing the bottle with her right hand and by this evening she was holding it with her left hand (the weaker side). She had an amazing physical therapy session and though her noggin resembled a bobble head, she was able to hold it up for about a minute. Often, it seems like we have a newborn all over again but instead of it taking weeks to reach milestones she's reaching them within hours or days. It's actually pretty cool to watch and I find myself anxiously awaiting her next awake time to see what she'll do next!





At home we play a game creatively titled, "Where's Trinity?". The rules are fairly simple and only require Trinity to cover her head with a blanket or other object (and preferably a light one!) and when we say, "Where's Trinity" she pulls the cover off her head. It had been a hit at our house…

Transition

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Sometimes I think I have a big nose. Sometimes pictures back me up. This is one of those times. Autumn looks cute as usual, but me, not so much.


There wasn't a whole lot going on today, though it flew by. Trinity had her second lumbar puncture today so that the doctors could run some more tests. The first results are already in: we now know one more thing that Trinity DOESN'T have. All in all, she's a very healthy baby, except for, well, you know. A good friend of mine told me that not having answers can be a good thing, because some answers are pretty ugly. It's true and I am lucky to have friends like that to give me perspective. Thanks Jon!We also moved out of the intensive care unit out onto the floor. It is much quieter, I am thinking that it will be much more restful for all of us out here. They only check on us every 4 hours instead of two. Of course, I say "us", but I sleep in a different room. Poor Autumn!The really good news is that Trinity is start…

Baby Steps

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God is teaching me about patience and the importance of small steps. Today was an interesting day because not much happened medically. There were no tests or results today, so it was a day of waiting. It was also a day of progress. Baby steps. Trinity was able to eat a couple times, one or two ounces of pedialite (sp?) at a time. The second time she had the grape flavor. I love grape flavor!

Also, Trinity is opening her eyes much wider than this morning or even this afternoon. It is very exciting! She still is not tracking with her eyes, but she is moving them back and forth. Also, she is rubbing her eyes, which is something that she does when she is tired. Baby steps. God is good.

Lastly, today I was reminded by a wise woman that it is a difficult thing to visit people that are in the hospital. It is a good reminder because we have been visited by many people since our journey started last Friday. That means that each of those people did a very difficult thing in order to show us their…

How I spent my summer vacation

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Good morning,

As some of you know, I am on vacation this week. Several months ago, I decided to take a week off of work and planned a 'staycation'. I thought I would get a few projects done around the house that I never got around to doing when we moved last summer and also spend a little quality time with Trinity. This past week certainly isn't what I had in mind but I'm sure it will remain my most memorable summer vacation for years to come :)

Now, back to Trinity. She is making small improvements with almost each period of wakefulness. Sometimes it's hard to see the changes but I know last night she was better than she was at noon and this morning her eyes are opening a little more than they were when we tucked her in last night. Her left leg has been weaker than her right but that also seems a little better today. We are hopeful that we may be able to feed her today as her suck was still to weak yesterday for the therapist to try. She still hasn't really '…

Trinity Update for Thursday

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As I sit here typing I can glance up and see Trinity sleeping peacefully in her fancy hospital bed. We were able to hold her quite a bit this evening, so she is pretty relaxed. I think it helped me relax a little bit too. I don't think I always appreciate how taxing this whole situation is. But God is good and He gives me strength to run the race. I know that I would not be doing so well if I didn't have His peace and strength. Holding her helped too, and talking to Autumn was great this evening. We talked and cried a little. I think that about once a day or so both of us have to let it out. We try to stay in the present because worry doesn't actually help, but it takes effort to stay there sometimes. And holding my precious baby girl helped too.
I didn't mind that she was sleepy, instead I was able to enjoy the fact that she was holding my finger and playing with it a little bit for about 45 minutes. It was a little piece of heaven for about an hour.
It was a little bit…

Binkie is Back!

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Trinity has now been off the vent for about 14 hours and she's doing well. For us as parents though, the first few hours were painful to watch. Her oxygen levels remained good but she was having to work to breath and because of the swelling around her vocal cords from the vent tube she made a whistling sound with each breath. She also was experiencing withdrawl symptoms from one of the medications she'd been on while on the vent so she was constantly moving her arms and legs, arching her neck and back and struggled to pull on her nasogastric tube (a tube that goes from her nose to her belly to empty stomach contents or feed her breast milk) and central line. My heart ached each time she tried to cough as it was so weak and hoarse. It has now been almost 8 hours since she has had any medicine to relax her and she is sleeping comfortably, oxygenating well and seems to be doing okay--as long as that binkie stays in!


By the way, if you look at the picture carefully you will see the…

Together At Last!

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This was about 10pm this evening or so

Deep Breath Update (Wednesday Evening)

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At the end of the day, Trinity is better now than she was this morning. I would call that a good day. Our baby is breathing on her own this evening and sleeping like, well, a baby.

This is a good step for Trinity, who is still on some seizure medicine but not the kind that keeps her sedated. No seizures all day. That's good for a parent's heart. But there is still a ways to go in the process. The doctors are having a bugger of a time figuring the pieces to the puzzle and how they fit together. We still don't know what was causing the seizures in the first place. Hopefully the results of the metabolic studies will hold a clue.

The infectious disease specialist was here today to start working on her health history. Interesting guy, never really made eye contact. He said an interesting thing, that he new that Trinity was a cute baby when he looked at her MRI. It takes an different kind of mind to be able to see that sort of thing. I am thankful that God made people like him. He…

Updates to Date

In case you don't have the whole story of Trinity, here are Autumn's
updates. She's great about sending them out:
Hello, We are now connected to the internet right here in Trinity's room! We thought maybe we'd find a library or something to check our email and send out an update but when we asked one of the nurses about this they said we could connect to a line right here in the room and they even had a laptop we could use. The circumstances might not be great but the staff here at St. Lukes sure are! I think this may end up being a long email just to summarize what's happened over the past few days because I know some people have more information than others so here goes... On Friday, I took a very happy and healthy appearing Trinity to daycare and at noon I received a call from 911 saying that they had our daycare provider on the line and she was having trouble waking Trinity up from her nap and the ambulance was on the way. My heart stills skips a beat when I …

Waiting For a Miracle

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As many of you know, Trinity is in the pediatric ICU at St. Luke's Regional Medical Center in Boise, Idaho. She's been having seizures but as yet there is no diagnosis aas to what the underlying problem might be. Autumn and I are learning a great deal and I am getting a crash course in ICU medicine. Trinity has been sedated since Monday morning about 2am Mountian Time. She is on a ventilator, so the sedative is to keep her from fighting all the tubes.

One thing we have learned is that we don't have control of this situation. It's hard because I don't want my daughter to suffer. I don't want her to have permanent damage from this. I want my daughter back because I miss her terribly. But I have to let all of that go and trust that God has our best in mind. I have to because I can't do a single thing to help her right now. So I pray and cry a little and sing to my baby. Autumn is doing the same.

We have been incredibly blessed to have support from all over the w…

The Thrill of Victory and the Agony of Defeat

So, the title says it all. We all have our highs and our lows. Without further ado:

The thrill of victory:



And the agony of defeat:



By the way, in case you were wondering if I let my daughter hit her head without comforting, I didn't. If you'll notice, the video ends fairly abruptly.