No throw up!!!!??

David:
5 days and no throw up!    This is definitely a turn around.
We don't know if many are still reading this blog now that we are home but we know there are still some.
We want to keep the updates going for you and to journal this chapter of our lives to revisit in the future.
Thank you again for your prayers.  How will we ever know how your prayers have moved our heavenly Father to act in ways we could never ask for or imagine.

Phoebe is still around 10.7.
She hasn't grown since the return from the hospital but she has improved greatly.
She smiles SO much more and is much more active, especially when she is layed on her back.........AND she is not throwing up!!!!!!!!!!!!!!!!!!!!!

We have reduced her feeds.   She just couldn't take the volume so we have been trying to get 18 oz of food into her daily for the last week or so.  She couldn't tolerate 20 oz.  She never got to it in the hospital and hasn't yet.....until TODAY.
We are so thankful for this encouragement.  We believe this to be significant improvement.  If we can continue to feed her this much we will expect to see weight gain.

Blood in the stool.

This has been a concern all along.  They found it in the hospital and chalked it up to cow's milk protein as the cause.
Well, Michelle has been off dairy for 3 weeks now and Phoebe still has positive hemacult tests.  No visible blood, it just shows up on the tests they sent us home with.
Yesterday one movement was negative!  But the next was positive.  Go figure!?  Who can actually understand all of this?  The doctors could not - only the Lord and He wants us to rest in that.  He knows the number of our days and the numbers of hair on our heads - He formed us in our mother's wombs - He is our loving Father and often will prevent us from finding the answers as without faith it is impossible to please God. (Hebrews 6)

This has been a difficult road.
The tube, the constant feeding schedule, and constant monitoring so she won't pull the tube out, the late nights as Phoebe often won't settle down until after midnight, wrestling with the fact that our other children are not getting the attention from Mommy and Daddy that they need, and the list goes on.....We are reminded over and over that the Lord said,
“Come to Me, all who are weary and heavy-laden, and I will give you rest. Take My yoke upon you and learn from Me, for I am gentle and humble in heart, and YOU WILL FIND REST FOR YOUR SOULS. For My yoke is easy and My burden is light.”

We are learning this... albeit slowly.
Surely this is part of His higher purpose...for the glory of His name.
It may sound "religious"  but it's all wonderfully true.

A GREAT WEEKEND IN THE MOUNTAINS!

I am so thrilled to be able to say Phoebe did not throw up all weekend long. We were about to give her her medicine the first morning we were there and I realized I had forgotten it. But there was nothing we could do about it. Well, as the weekend progressed I realized that she hadn't thrown up at all. I couldn't believe it.
And she's nursing more and more and keeping it down. We are back home today and needless to say we will not be giving her any more medicine. I had wondered about a week ago if she was not tolerating the medicine very well. And now I think we have our answer.
     She doesn't have any weight gain to speak of but she is maintaining. She weighed in at 10.7.2 today. (Can't wait to see 11 lbs!) She's also more active. If you lay her on her back she kicks her feet and swims with her hands and makes the cutest little happy face with her tongue sticking out of the side of her mouth.                         
     I am very encouraged. Thankyou for your prayers.
(I also wanted to add that about 4 days ago we started feeding her breastmilk in her tube
instead of just formula. But we fortify the breastmilk with a little bit of formula to increase the calories. So I'm also really happy about that change.)

UP AND down! down and UP!

Yesterday Phoebe weighed 10.5, but thankfully today she was back up to 10.7.9. These are very difficult days and nights for us. We can't wait to see a light at the end of the tunnel.

 Psalm 5:3
In the morning, O Lord, you hear my voice;

in the morning I lay my requests before you

and wait in expectation.

Back Home and VERY busy!

To those of you who have been faithfully praying for us, we are so very grateful. Sorry that we have not been able to update the blog since coming home. I don't think I've ever been more exhausted in my life. Each day is so full, and Phoebe is still not stable. Nights are a lot of work. She keeps us up late.
She had been steadily gaining, she was 10.8 yesterday but she was down an ounce today- 10.7. But they told us to expect a little bit of up and down. David has gotten really good at putting her tube in when she pulls it out. So that's a blessing. Overall her mood and energy during the day is great. She seems stronger. And I am very thankful to have the joy of nursing her again at the beginning of many feeds.  It's a comfort for us both. We are finding rest in the Lord whenever we are able, and of course we want to learn whatever it is that He desires to teach us.

David:  This verse has come to my mind several times over the past few days,
Matthew 11:28 "Come to Me, all who are weary and heavy-laden, and I will give you rest.  Take My yoke upon you and learn from Me, for I am gentle and humble in heart, and YOU WILL FIND REST FOR YOUR SOULS."

IT IS GOOD TO GIVE THANKS TO THE LORD! Psalm 92

WE'RE COMING HOME EVERYONE! There was a sudden change of events this morning.

The Lord has done above and beyond all that we could have asked or imagined.

More details to come!

Get that bottle out of my mouth!!!

Well, I know it's been a couple of days since we wrote. Sorry about that. No progress with the bottle AT ALL. She's smart enough to know that it's something she absolutely will have nothing to do with no matter how many tricks you think you can pull out of your back pocket. You can't pull the wool over her eyes. She is very smart and very fiesty!
The good news is that her weight gain is fabulous.It was 10.6 yesterday. They can't believe how fast she is gaining. They typically see a slower rate of growth.
As you can imagine, we are thrilled! She's getting stronger, and she looks sooo much better.
Going to sleep at night is probably the most challenging time for us. She so badly wants to nurse at night and she gets so mad. She actually pitches little fits! Can you believe that? Not sweet little Phoebe, surely not. Oh, yes. So midnight is when she finally gives up and conks. Only in Daddy's arms though. She's absolutely inconsolable in my arms.(very difficult for me.)
Now that she is gaining well, David and I are ready to come home with her on the tube. It's been a week now with no trace of milk protein in my diet. They would like for me to wait another week before giving her breastmilk. But, we'll see.

I'VE BEEN KICKED OUT!

No, really. I have. They won't even let me in the room right now. The speech pathologist and physical therapist are in there working with David. They want Phoebe to take a bottle from him. They have something that they've put in a bottle that tastes and smells really good. It's 12:30 right now and they stopped her tube about 4 hours ago, so that she would be really hungry. I am in complete suspense.********** If she doesn't take it right now, they will just keep trying over the next couple of days until it works. The good thing is that she is so bonded with David. What a blessing.
I'll be back with the results.