Wednesday, December 5, 2007

Wednesday, December 5, 2007 - Update

Olivia is doing well and her feeding schedule has been changed from every 3 hours to ad lib, but she can’t go longer than 4 hours between feedings. I bottled her at 6:00 pm, however, and she only took 30 ccs. When she is done, she cannot be forced to take anymore. I tried to get her to take a bit more tonight, against my better judgment and she desatted. She will be having her car seat test tonight. They will monitor her heart rate and saturation for an hour and a half while in the car seat. I’m guessing it will still be a few days before we’re moved to family care. I would personally like to see her go a few days without a brady first. Also, her bloodwork today showed that she is slightly anemic again, her GGT (liver enzyme) is elevated again and her alk-phos is higher than ever. I would like to learn more about what that all means before I’ll feel comfortable taking her home. Now, I know I will probably never feel comfortable right at first no matter how long she waits to come home, but I’d like to have a little peace of mind. I’m also hoping that someone can help answer this question for me. On Monday, she had a pretty bad brady and became unresponsive. We finally got her breathing again with more oxygen and stimulation, but in those kinds of situations. . .how do you know if you should begin CPR? How long do you give her to come back up? It just terrifies me. Ryan and I have decided that we want 2 people with Olivia at all times. So, if one of us has to leave we would love it if someone would come over for a while. (Of course. . . you must be completely well with hands thoroughly washed, etc.) I also would love if someone would go with me to her doctor appts if Ryan is unable to. I don’t know how I’m going to do it all by myself with her carrier, diaper bag, apnea monitor and oxygen tank. . .in the wintertime. Plus, what do you do if you’re driving down the road and the apnea monitor goes off? Can you tell I’m just a bit apprehensive today? As much as I’m dying to have her home. . .I just pray every day that God will let us know when the time is right.


Keith & Sarah Milligan said...

You'll be able to do it all on your own. I promise :) By the time Sydney had been home for two months both Keith and I were pros on taking her out on O2 and monitors by ourselves. And since my husband hates going out with her alone that's saying something LOL It will be easier than it looks! ;)

Anonymous said...

Yeah so let me be the first to officially volunteer. Well on the blog at least! I'm sorry to hear she won't be going to family care quite as soon as you thought, but I'm glad she will have a few more days to get used to the bottle and to maybe lessen her bradys. Wow, it's late. I'm off to sleep!


Sarah Furlough said...

Sarah is right. It seems overwhelming at first, but you'll get the hang of it in no time.

I hope that you'll be able to get your questions answered soon. I think it will put your mind at ease.

Olivia looks just beautiful, as always!

Anonymous said...

You would hope the Dr would not let her come home if she is still having lots of A's and B's. From what you are saying about her bottling and blood work and A'B she is not ready to come home.

Anonymous said...

You'll be able to do great, take your time and let Olivia take hers.
you and Ryen are such good parents,
I ask God today to give you strength for endurance (col 1:11)

God is awesome:)

Anonymous said...

Boy Howdy, What A Way To Begin My Day! The pictures are more than AWESOME! I don't think there are words to describe how beautiful they are. Not only is Olivia "Safe In The Arms of Jesus", she is also "Safe In The Arms of her Mom". Bill came by the church yesterday morning and told us about her maybe going home - how great is that! Our prayers continue to be with the three of you - you'll do GREAT! Love, M.A.

Anonymous said...

Sorry to hear that it might be a little longer, but don't worry... the doctors will not let her come home unless she is ready and when she is... you WILL be able to do it! It's so scary at first (I had a few breakdowns in tears wondering how we could do this! And I called the NICU 3 times the first night we were home!!) but you will get through it and it gets easier after such a short time!

Also, I'm not a dr and won't pretend I know anything about Olivia, but we also struggled with extremely high alk phos levels with Charlie ever since he got discharged (He got out of the hospital in at the end of May) He alk phos level was super high (1500) a big part of the summer (at home with us) and we were looking at seeing a liver specialist just this month, when they FINALLY came down to normal. I was really worried all summer and up until now because I had never heard about any alk phos problems until the end of the hospital stay.

Anyway, to make a long story short... it took him (and I guess usually takes lots of micropreemies) about a year to outgrow the damage done to their livers from being on TPNS. Of course, I don't know if that's Olivia's problem, but I just wanted to give you some hope that it could end up being something she will just outgrow!!

Goodness, I end up talking a lot on your blog. I'm sorry if I'm talking too much!! I just feel for you so much and we've never even met!! We will keep praying for all of you!

Shanan said...

She looks utterly adorable in PINK!

Becky said...

She's so beautiful!! We prayed for you all again at Bible study last night. Praying that God gives you and Ryan the strength to persevere and the peace that comes from resting in His care.