Albumin infusion

Hi everyone. It's Michelle here. I'm going to try to give you a brief update here. The last 24 hours have been pretty tough. They needed to give her another I.V. last night and it was unsuccessful. She's had so many sticks and pricks that they were actually running out of places to find a good vein and when they would find one it would "blow." She was whipped when we all went to sleep at 2 :00am, and then it all started again this morning. They brought in their I.V. team to try and get a vein, then they brought in "air-care"( the helicopter guys), and then their final resource was "ped- specialists." The very last vein they saw as a remote possibility worked! It was thrilling for us because it meant that she could now receive this very important infusion of albumin which will reduce her swelling. She is now swollen in her stomach as well as her legs and feet. Urine output was very low yesterday. Not a good thing. As I write this, the albumin is going in, along with her tube feedings and she is sleeping on David's chest. A moment of peace and well-being for all of us after a very difficult 24 hours. David shared a verse with me this morning that I found so wonderful.
         Is there any God besides Me,
         Or is there any other Rock?
         I know of none.’” Is. 44:8
And also-         That men may know from the rising to the setting of the sun
         That there is no one besides Me.
         I am the LORD, and there is no other,
       7The One forming light and creating darkness,
         Causing well-being and creating calamity;
         I am the LORD who does all these. Is. 45:6,7

We love you very much and we can't wait to see you in the near future with a happy Phoebe in tow.

I.V. successful!

We are giving the Lord thanks that the I.V. was successful. It took them four times. They called in the very best they had. The other night it took them five times.  But tonight we have to give her albumin in her I.V. So it was very important that they get it. The first I.V. she had was no longer able to be used.
This albumin will help her swelling go down in her legs and in her stomach. A very traumatic day for Phoebe but we are convinced that the Lord is carrying her through everything. "...little ones to him belong, they are weak but He is STRONG."

PSALM 27

1The LORD is my light and my salvation;
         Whom shall I fear?
         The LORD is the defense of my life;
         Whom shall I dread?
2When evildoers came upon me to devour my flesh,
         My adversaries and my enemies, they stumbled and fell.
3Though a host encamp against me,
         My heart will not fear;
         Though war arise against me,
         In spite of this I shall be confident.
4One thing I have asked from the LORD, that I shall seek:
         That I may dwell in the house of the LORD all the days of my life,
         To behold the beauty of the LORD
         And to meditate in His temple.
5For in the day of trouble He will conceal me in His tabernacle;
         In the secret place of His tent He will hide me;
         He will lift me up on a rock.
6And now my head will be lifted up above my enemies around me,
         And I will offer in His tent sacrifices with shouts of joy;
         I will sing, yes, I will sing praises to the LORD.
7Hear, O LORD, when I cry with my voice,
         And be gracious to me and answer me.
8When You said, “Seek My face,” my heart said to You,
         “Your face, O LORD, I shall seek.”
9Do not hide Your face from me,
         Do not turn Your servant away in anger;
         You have been my help;
         Do not abandon me nor forsake me,
         O God of my salvation!
10For my father and my mother have forsaken me,
         But the LORD will take me up.
11Teach me Your way, O LORD,
         And lead me in a level path
         Because of my foes.
12Do not deliver me over to the desire of my adversaries,
         For false witnesses have risen against me,
         And such as breathe out violence.
13I would have despaired unless I had believed that I would see the goodness of the LORD
         In the land of the living.
14Wait for the LORD;
         Be strong and let your heart take courage;
         Yes, wait for the LORD.

---

5 months later at Chapel Hill

To our PFF family and our family in Canada and all who are praying on our behalf,
Here's an update. 


Phoebe seems stable however, she doesn't seem to be moving forward.  She is very low in everything.(albumin, sodium and calcium)
They hooked her up to an I.V. two nights ago for 36 hours and took it out today depending on the fluid from the NG tube to keep her hydrated.

They think it will take at least a week for her swelling to go down and they want her intake up to around 24 oz of formula a day.
Right now she's getting around 16 ish.

Our desire is that her stomach will begin emptying faster so that they can feed her more volume and calories over the course of the day.  It looks like it will take several days to get to that point.

We feel like we're right back where we were 5 months ago, watching carefully her rate and dose so that she doesn't throw up.

Remember Michelle. She's doing extremely well emotionally and her back is feeling much better but it's still a lot.

Spiritually,
We are thankful - always thinking and analyzing, but not complaining (thank the Lord).  We are finding peace and rest in the truth that tribulation of all sorts grows faith and without faith it is impossible to please Him.  I, for one, am in need of much faith and I'm thankful for this opportunity to grow in it.  We believe He is working "all things for the good to those who love God and are called according to His purpose."  He is making these mysterious and beautiful truths more and more real for us as we desperately need them to be.

We hope you are all doing well and drawing near to Him and finding delight in His wonderful ways and in His tender mercies.  Please pray that we will do the same.

Love,
David and Michelle.
and little Phoebes.

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.