Aye-Yi-Yi!!

I have no idea how to spell that so sound it out...

I feel like if there is bad news, I am the one who has to see/hear it. Last night, M went in and they were so optimistic about how Emily was doing that they were talking about trying to step down her vent and they increased her feedings to 0.7ml/hour. I drove in hoping to be able to touch her at least a little, but fortunately I had a dream last night that warned me about this so I was kind of prepared for things to be back on a down.

When I got in this afternoon, there were two drs looking at her and moving around a little too quickly for comfort. It turns out that her right lung partially collapsed again (so the vent is back up to its old settings and she is on meds again) and they had to suction the milk out of her stomache because she wasn't passing it through and her abdomen is 'distended with loopies'...swollen and looks funny (they let me look but I have no idea what is normal so I had no idea what was bad). They have stopped feedings and when I left, they were taking x-rays of her belly to see if they needed to take more serious action or wait and x-ray in the morning again.

As you pray, please remember that we need the bowels to function so we can buy enough time for her lungs to heal.

Thank you for your prayers for me. We hit six weeks yesterday and I am now allowed to start lifting K and taking over full care of her. I can also start cleaning the house and doing things that in general will make me feel like I am contributing...and should in the end help me to deal with all this better. Don't worry, I will do my best not to over-do it and take things slow. God bless you all!

Lots of Firsts

Sporting the 'NICU haircut'...the nurse calls it that (shaving a part of the head so they can put a line in). You know the lighting is bad if our camera can't get good photos...this is as good as it gets.



Well, good news...for once...PTL!! Emily is still eating and tonight they will up the amount to 0.5ml per hour. Her blood gases are stabilizing and they actually adjusted her settings on her vent today. Everything else is kind of the same.

In other news: K took her FIRST STEP last night! I don't know if we get to count it but she held on to her toy and let go for one step to get to Dad.

She also opened her first Christmas present today...it was quite fun and she LOVES her new lion push toy.






Helping Dad put it together...such a studious little girl!


Riding it...

Pushing it...

Food??

Well, they started feeding her again yesterday...0.2cc at a time (a couple of drops for the less scientific among us) and so far she has tolerated it. They found some gas in her x-ray this morning and that is what they are looking for...yes, that is from her father's genes. So they are continuing to give her milk today. If she can eat and start putting on weight, she has a much better chance of kicking the lung issues. Please pray this continues. Thank you.

Thanks April!!

Just wanted to thank April for coming out and helping us for a week. It was a great visit! We mostly just hung out and April cooked and did battle with the millions of ants trying to enter our home to get out of the rain.

Between April and my mom and many other people around here, I am healing quickly and hope to be fully back on my feet in a couple of weeks.

These are some pics at G+G E's before we took April to the airport.



We kept trying to get some cute pics but most of the time she just attacked the bears. :)

Yeah

Sorry I was so negative yesterday...I am getting quite discouraged about this whole thing and I expressed it poorly. We keep describing this as a roller coaster but lately, instead of ups and downs, it seems to me that things are just steadily getting worse. I called in last night to talk to the night nurse (the only one who has been with her from the beginning) to voice my concerns and I got a lot of straight answers.

I told her that at this point (working on week 6), I was starting to get worried since things just really aren't improving and she told me that she agreed that a little worry is appropriate...she has been feeling the same way. We just can't seem to get her to any of the milestones we are looking for. Last night when they tried to adjust her oxygen, she was so intolerant that they had to put her back up to 100% for several hours (she hasn't been that high since she was first born). Everything they try with the ventilator and her gases pretty much backfires. They continue the morphine and blood transfusions and the like and we just aren't seeing any improvement. The longer we go without SOMETHING working, the worse it gets.

BUT, the nurse was also quick to point out that she is 'quite a fighter'...I don't know why she keeps saying that so I have to assume some babies must just quit at this point or something. Her heart is strong and she hasn't had a brain bleed yet. She likes my breast milk and even tries to suck on the q-tip when they put it in her mouth (they swab her mouth a couple times a day). She thinks that if her bowel heals and we can feed her, she will be a good eater and start putting on the weight she needs. We have to wait for Monday's x-ray before they decide when they will try food again. And, well, she's still here and still fighting.

As you pray for us, pray against discouragement and fear. There is a paradox in the situation: at any moment, she may die, and yet she is still here and still living. In an attempt to wrap your mind around it and cope emotionally, you go through phases of 'accepting' her death and then 'denying' or fighting it with all your might. It just seems like we cycle through all the emtions of dealing with the death of our child and yet there is no death and therefore no closure and no way to begin moving on. I am realizing once again how fragile I am...I survive only because God sustains me. When I look at God, I am fearfully rested. He is in control. But when I lose my focus and look at myself, I just wonder when I am going to get crushed under the weight of this.

Thanks for listening. Thanks for your prayers and your constant support. When this 'time' is over and we all get to look back, my prayers are that we watch a precious little girl run and play and thank our God for the life he spared. God bless you all on this day. Look at your children and praise the Lord for every one of them!!