Good recovery

Phoebe has taken a few days to recover from her procedure on Thursday morning. The anasthesia made her throw up and feel pretty yucky. She didn;t really want to eat. So the tube went back in, but she threw up with that too. So things have been pretty stressful since being home especially with the other children in the picture as well. But she is getting her appetite back and diving in to drink her "splash" formula. As long as she does well with this drink we will leave the tube out.
 Today was her first really good day. But she has had cold symptoms since her procedure, which they say is not uncommon. So we are hoping that her cough and runny nose will get better quickly.

Please pray that she might be protected from any further sickness, colds and flu bugs.
We are anxiously waiting for her to hit 15 lbs. She is not even 14 and a half yet. But I am hopeful that we are on our way to better weightgain now.

Friends and family have stepped in to help with meals which has been such a blessing. I can't believe that our family is together at home and life will resume some normalcy. What a treat.

First day to drink from a straw!

We are pretty excited. Her ng- tube slipped out early this afternoon. It was due to be changed to the other nostril anyway. So we thought we would atleast give her an hour or two off. Relief from the irritation of that thing in her nose and down her esophagus.
Well we immediately tried some oral feeding. They gave us some little juicy containers with the little straw when we left the hospital. But instead of juice, it's her very expensive formula(which tastes disgusting on it's own), but it's flavored with orange-pineapple. We put the straw to her mouth and she immediately started sipping it like an old pro. It was actually quite miraculous. Here we are tube feeding her an ounce/hour. And she just chug-lugged an ounce in a minute. She drank about half of the carton and then took the best nap she's taken in along time-3 hours!
Then when she woke up we went at it again with the straw. She finally finished it at around 8:30pm and when she drank the last sip, our family cheered so loudly, while she kicked her legs in glee. We got down on our knees and thanked the Lord for the success of this flavored formula, packed with calories(30 cal/oz). We spent the rest of the evening singing praise songs with the kids and giving the Lord thanks.
She actually drank three more ounces after that from a cup. And, once again she just blew us away as we watched her drink from a cup just like any other child would.

Well, David just put her to sleep so that is my cue to do the same. Bye for now.

Surprise! A much needed BREAK.

The scope procedure was scheduled for next Tuesday so we asked if we could go home for 4 days rather than stay in the hospital after not leaving for over 3 weeks.  
After much humming and Hawing (sp?) they let us go and trained Michelle how to care for the catheder.
Then we found out that because it will be an out-patient procedure, they backed it up to next Thursday.

After the procedure they will re-admit Phoebe and then we'll find out whether it will be for one or more days.
Michelle is VERY thankful to be home.  We are ALL very thankful to see both Michelle and Phoebe here.  We will be able to be with our body of believers tomorrow at church.  I'm looking forward also to hearing Michelle's much missed prelude music on the piano.

It's a six day break and we don't know what lies ahead but we are very thankful regardless.
Phoebe is taking her feeds from Mommy and the NG tube.
We are praying that the catheder won't get clogged ...if it does, we have to immediately return to the hospital.

Thank you for praying for us.
P.S. It may be a few days before another entry.

Pictures

 Here a some pictures we've taken over the past few days.  Hope they bring a smile to your face.

 Teri-Ashley's 6th Birthday breaksfast at MacDonald's (her choice.) :)
(Phoebes stayed at the hospital with a willing nurse)

 On our way down to Starbuck's for TeeTee's birthday.

 A great way to have Phoebe at the celebration.
Wow...2 birthdays at the hospital in 2 weeks.  Different.  but O.K.
People's what matters!

Thursday

Here we are still. Sorry that I haven't updated in a few days. Thankfully I can say it's because I've been spending wonderful time with my children and my sisters. Nights are still incredibly hard with Phoebe so ther is no time to blog in the evening. I normally have to take her for walks to keep her from fussing and nursing non-stop. Even Phoebe knows that it's not much fun in a hospital room.
She sleeps with me at night in the double pullout couch.
I'm actually just about to talk with the GI specialist any minute now and I'll find out when this endoscopy is going to happen, either tomorrow or next week.
She is keeping her feeds down wonderfully. They are at the GOAL of 30ml/hr. And she is still nursing as well. So her little tummy is tolerating this volume wonderfully. No throw-ups. Every now and then she might spit up when the nurse draws back milk from her tube. But we always know what caused it. But for her to sleep flat on her back all night with her feeds running and wake up in the morning with out throwing up is just amazing.
I've been putting her in this exer-saucer each day and she jumps a little and plays with the toys on it very contentedly. Right now she is in her crib looking through my little hymnbook. (She's a very spiritual little girl!)
Pray that we will get home soon!
Much love to everyone.

Saturday

Phoebe looks better and better. I am so encouraged. Julia, my sister has been here with me for a couple of days. I have loved having her here. Everybody thinks we are twins. She has been a wonderful help and of course great company! I am going to try and post some pictures as soon as possible.

Phoebe's numbers looked really good today:
albumin- 2.9         (3.5 to 4.0 is the goal)
Hemoglobin-8.7   
white blood cell count-16


This coming week their desire is to take her off of the nutrition pack in her veins, and only give her food in the tube. So we will look forward to that happening. She is finding great comfort in nursing. I never ever thought I would have a one year old with such a desire to nurse. It's a wonderful thing.
I still pump first before every nursing even throughout the night, two or three times.
Nights are still pretty disturbed. Little Miss Phoebe has not learned how to sleep for very long yet. She does rather well sleeping on a human body though, basically whoever is willing to sit in the rocker for one or two hours and let her sweat all over them. What she really needs is Grandma here full-time for that very purpose,day or night.(ha, ha!) Right Grandma? She's always had that magic touch with the children, but unfortunately she's all the way in Canada. And Nana isn't available either because she has the other three munchkins. Oh well, I guess Aunt Ju-Ju is going to have to do. I think Phoebe's only complaint would be that she is a little skinny! It's just not the same. Yea, we'll have to get Aunt JU-JU to gain a little weight.
Well, I think I'm starting to ramble, so I better sign off. Love to all and thankyou for your continued prayers. I can't wait to come home!

Thursday

Phoebe looks great today.She looks fuller everywhere. I've had a wonderful time making her laugh and smile.

She smiles and waves at different nurses who walk by.

Technical details:
Albumin-2.8
Hemoglobin 8.8
WEIGHT- 14.3(yea!)
white blood cell count dropped a little(so no antibiotic)yea!

Isaiah 40:11

Like a shepherd He will tend His flock,
In His arm He will gather the lambs
And carry them in His bosom;
He will gently lead the nursing ewes.

Wednesday

Phoebe came through the transfusion wonderfully. Although it was one of the most peaceful procedures thus far I found it to be the most sobering and emotional. Watching someone else's blood enter her body, knowing that it would give her life was incredible. It was impossible not to think about all the songs about Christ's blood . The blood of Christ is more precious to me now than ever.

David asked the nurse if he could pray before the tranfusion began. And then we played a few songs on the computer like "You will be saved." And then I nursed  her for a long time while 'happy tears' rolled down my face. The nurse thanked us for letting her be part of the prayer. From start to finish it took 2 1/2 hours.


Technical details:
Hemaglobin was up today from a 6 to 8.4
They are still resting her gut(very slow tube feeds, only breastmilk after pumping,no solids)
She receives all of her nutrition through her Broviac line which goes straight into her veins.
They draw blood every morning from her broviac line, so she sleeps right through it.
She has been diagnosed with "protein losing enteropathy." That's why she is on gut-rest so that whatever caused the irritation will heal.
Albumin is at 2.5
White blood cell count is high(they are closely monitering that)

Tuesday morning

Phoebe is doing well. Her weight was 13.7.  But they screened her this morning for a blood transfusion.
We don't know when she will have it but her hemoglobin is very low, so it could be today or tomorrow.
Pray that it will be successful, and have the desired results.

Monday morning sleep in

Phoebe slept longer this morning than she ever has in her life. She slept with me until 6:oo this morning and then on David's chest until 11:30am. It was so wonderful to see her sleep so well and to know that maybe she's recovering from a week of nothing but tests and trauma. She does nurse from me as well for comfort and that has been wonderful to be able to offer her that, especially when she is otherwise inconsolable. I always pump first to minimize the amount of milk that she takes in. The doctors would rather breastmilk be minimal right now while they complete their studies on her. So we certainly want to respect them and it looks like we have found a fairly reasonable compromise.
Her albumin is UP today!We are thrilled. It is 2.7 up from 1.5. It needs to get to 3.5 or 4.0. The doctors are very pleased with her progress. Swelling(edema)  has all gone down. Unfortunately she looks skinnier than ever. But things are headed in a good direction. She is weighing in at 12'14. I'm SOOO ready to see her plump up.
The other thrilling news is that she is smiling again! and actually laughing too. We have waited a long time for this day. A month, to be precise.

Thank you all for your continued prayers and even the many children that are so faithfully bringing Phoebe before His throne.


P.S- We have a young medical student who has taken a liking to Phoebe and as he gives her report to the rest of the medical team in the morning, he refers to her as "Princess Phoebe." It is SOOO sweet.

Weekend update

Phoebe recovered well from her surgery and things calmed down for her on Saturday. David left in the evening and my good friend Melissa came and spent the night with me and all day Sunday. It was great to have company and she certainly shared in taking shifts with Phoebe.

A night away!

I've been dying to write since Saturday morning when I found myself waking up in a lovely hotel room after a great night's sleep along with my two oldest children. What a treat. I was forced to accept it by my husband. He booted me out of the hospital room the day before and said "don't come back until tomorrow afternoon." The hospital gave me a handpump to take with me. So off I went. I was greeted by flowers and chocolate in my room placed there lovingly by the hands of my beloved. Very special. I came back to the room refreshed and ready to hold my baby again.(Both of them, ha,ha)

Friday morning surgery

Phoebe had a broviac line that was surgically placed at 7:30 this morning. The night was particularly rough. Her feeds were turned off at 2:00 so I think she was hungry. She wouldn't go to sleep. I walked round and round the hospital floor sith her in a stroller. It atleast kept her from crying. The nurse tried to take her a few times to give me a break. 6:30am finally came and I got ready to take her downstairs where they would give her anasthesia for her surgery.
I went back up to my room on the 6th floor to wait. When it was over the surgeon and his team came up to my room and came in to tell me that the surgery was successful and that it went very well and she was in the recovery room waiting for me. He was a very nice man with a kind smile, DR. Weiner. I felt like hugging his neck. I was thrilled and immediately thanked the Lord for his Goodness. I went down and nursed her for about half an hour and cherished every minute that I was able to comfort her.
David and the kids came a little while later.

She had a sweat test at 1:oo to test for cystic fybrosis. It took about an hour and a half. It came back negative., thank the Lord.

They started TPN in her broviac line at 6:00pm. That just means that she is getting total and excellent nutrition directly placed into her bloodvessels. But they are giving her gut a rest. She will still feel satisfied even though she is not feeding orally. Tomorrow they will begin to put more food in her feeding tube and possibly even encourage some solid foods.

Thursday, Birthday update

Upper G.I. started at 8:00 this morning. Her stomach empties nice and fast and everything about her digestive tract looked very healthy according to the specialist. No signs of allergies or abnormalities. But it took a long time for her food to get to the very end. So she left radiology at about 5:oopm. A very long day especially for David who held her between every xray they did.
Dad came with Marie and Julia and all the children. It was so wonderful to see their faces.
Teri-Ashley and Nathan stayed when the others left and David spent the night with them at a local hotel.

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.

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.

10.3 and RISING!

We really were not expecting her to gain today. So it came as a delightful surprise. Tomorrow's going to be a big day as they try to get her to feed from a bottle.

We will also have some decisions to make as we lay everything on the table: The tube, the bottle and nursing from me. Please pray for wisdom in these decisions especially for me as I push my emotions aside regarding nursing. My greatest desire tomorrow is to see bottlefeeding become successful. That way we can control whatever goes in the bottle and then take her off the tube. But we are ready to come home. So whether we come home on the tube or on the bottle, we will be happy. We'll see what they say tomorrow. 

(I should add something here. I realize that if I was at home  with the other children and responsibilities and phone calls and household responsibilities, Phoebe's care would be diminished instead of priority. So I actually feel like we are in the best place for both she and I. And I am very thankful for that. This hospital has provided the perfect environment and professional help that we needed. They even bring me a "breastfeeding mom's plate" at breakfast, lunch and supper that has been specially prepared to be dairy free. This has been a wonderful blessing.)



This was one of our nurses named Emily. She showed a real warmth toward Phoebe. She took wonderful care of her and gave her  the sweetest little orange teddy bear.





Skippy was another fabulous nurse who came in the middle of the night last night and put Phoebe's tube back in after she pulled it out. She also took one of Phoebe's outfits home and washed it herself because  Phoebe had a blowout in it and we have no way of doing laundry here. These nurses went above and beyond their call of duty to help us. Oh, Skippy also brought us a hospital bed in here so we could get a better sleep.  As you can see in the picture we have to keep Phoebe's hands wrapped in "mits" made of diapers to prevent her from pulling at the tube in her nose.
This picture was taken Sun night at midnight.  That's seems to be when Phoebe will finally close her eyes for the night.

David:  Our greatest decision tonight was thinking thru the flow rate for the pump.
So many professionals here and yet so many differing opinions.  Right now we are pumping in twice the amount she was getting at home.  At times she seems a little uncomfortable when she's had about 3/4 the amount of each feed.  We were seriously considering backing off her volume for the night but a couple of the staff firmly believe we need to set a consistent rate of flow so that her body can adapt to it. It will hopefully prepare her to handle larger volumes of breast milk and or formula from a bottle.
We are praying that she will make a good transition.
Phoebe had a great evening.  It was so nice to get out for a wagon ride down the different hallways while Michelle was busy "keeping supply up."  We are very thankful for their big freezer.
Once again... they really are a great staff.
We have thanked the Lord many times for them.

EVERY OUNCE COUNTS!

YUP! You guessed right. We have been here since Tuesday and today was the first day that the scales showed a weight gain.  9 lbs 15 oz. There's a baby next door who
is a month old and weighs 10 lbs. It was a stark reminder of how far we have to go. Phoebe will be 7 months old on the 30th. Hard to believe!
The mother spoke with Michelle for a while and heard Phoebe's story and later suggested we read Psalm 121.  Maybe we can let her hear Herman's version of 121.
My Mom also commented on one of the posts and suggested Psalm 121 - so perhaps we should all read it together.
Here's the Psalm.  Very comforting.

Psalm 121

 A song of ascents.

1I lift up my eyes to the hills—

where does my help come from?

2My help comes from the Lord,

the Maker of heaven and earth.

3He will not let your foot slip—

he who watches over you will not slumber;

4indeed, he who watches over Israel

will neither slumber nor sleep.

5The Lord watches over you—

the Lord is your shade at your right hand;

6the sun will not harm you by day,

nor the moon by night.

7The Lord will keep you from all harm—

he will watch over your life;

8the Lord will watch over your coming and going

both now and forevermore.

Dwelling on things to be thankful for

Yes, that's what we're doing today. Today has sort of been a day where the reality of everything sinks in. And of course that reality is not very pleasant at all. Being sleep deprived doesn't help either but we are grabbing naps whenever we can. Phoebe has refused to nurse from me this morning. She arches her back and turns away from me crying as if I am going to do something traumatic to her. So I was pretty down about that. I was very emotional thinking that I might not nurse her again. Infact, I'm going to try and nurse her again right now.

**************************************************

YIPPEE! That's how my heart feels. She just nursed for about 15 minutes.(Maybe the Lord allowed that to happen because He heard a child's prayer go up this morning for Phoebe.) And I can just see how it brings her such comfort and she completely relaxes. Infact, she filled up a huge dirty diaper while I was nursing her. It took four of us to change her. She got it on her clothes, her tube, everything. But it was a delightful mess. We're happy to see her body working.

 Well I started out this entry feeling pretty down, but now I my heart feels so much lighter. I am also very excited today because any minute I will see three very precious little faces peering in here at me. My parents will be coming up with the kids. I can't wait to hug fat little MY-MY and see his funny little face that he makes.

      They switched Phoebe's formula today to Neocate. They give it to preemies. It is for the most sensitive digestive system. And because she is still throwing up frequently, they were ready to switch her over. So we feel good about that.

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They've come and gone and David and I feel like we have had a vacation! 

Nana and Papa came in the room, Dad fell asleep and so did Phoebe. So after a little while, David and I took the oppurtunity to bolt out the door for a family excursion. It was the first time I've left this hospital floor since Tuesday! We went to...................DRUMROLL........................you guessed it>>>>STARBUCKS!

Of course, right? I mean it just makes sense, doesn't it? That's where any "normal" person would go after being cooped up, right? It was delightful. The kids were with us and Phoebe was being babysat by Nana and Papa. When we got back, she was playing with a toy in her chair, and was doing better than we have seen her in all the time we have been here. Of course Dad took full credit and said again what he has been saying all along. 

"All she needs is to come home with them and everything would be just fine." And we know that there is some truth to that. Who wouldn't do better with a Nana and Papa like them?

     I did get just a taste today of how my mom must have felt when she was apart from us in Zambia. Like I said it was just a taste, but it made me love her more for what she went through.

Well, this is such a nice little outlet for us to be able to share a little bit of our hearts with you every day as we update you and journal our experience for future reference. And it brings tears to my eyes even right now as I think about all the voices that are lifting up prayers to God on our behalf. What a comfort! I wish everyone on this hospital floor knew that comfort. 

  We love you all so much. Thankyou for your love.

Thursday, April 22-POST TRAUMA

Sweet little Phoebe is escaping in sleep today. I love seeing her sleep because she looks perfectly content. Last night none of us slept very  much. We had to keep her upright on our shoulder, so we took turns sleeping with her on the recliner. She began to have severe gas pain as well, which they said is not unusual with this formula. So they have been putting Mylicon drops in her tube and it has really helped.
She continues to throw up every few hours but the amount that comes up isn't too concerning. 
    She is definitely traumatized. We can't even change her diaper without her screaming. We are hoping that that will get better and better each day. Especially as there is nothing invasive going on now. I am pumping every couple of hours. And I am able to let Phoebe nurse as long as I pump right before it. But I can only keep her there for a minute.(just long enough to make sure that she hasn't forgotten me.) 
   The doctor would like to keep her until Monday. By that time, they will be able to see whether she has made drastic improvements or not. Even though I stopped drinking milk 2 months ago, I didn't completely and entirely remove dairy from my diet( butter, cheese, soy products, any baked goods containing milk.) Therefore it was still in my milk which meant it would still be affecting her. They are calling it a milk protein allergy found in infants. It is a severe allergy that manifests many symptoms including reflux.
So I have already made the necessary changes in my diet, so by Monday they will be comfortable for me to nurse Phoebe freely. They will decide what else will be supplemented along with my milk, but they are hoping that she will be a different baby by then. It looks like our doctor might be a believer. When we told him that we are musicians in our church, he was really interested and said that he plays a little bit of guitar for his church. 
      Well, there's not too much down time here. Between Phoebe and the different medical staff, the day is completely filled. Hopefully the weekend will be much more peaceful. Most of the staff goes home.
       I really miss the children. I even miss changing Myron's 7 dirty diapers a day!

Phoebe's a Champ!

We have a few moments of peace here and our hearts and souls are at rest. David is holding Phoebe in a "Moby Wrap"(borrowed from Jack and Jenny.) I put my turqouise necklace on David's neck for her to play with. So she has been very calm. First of all she went straight to sleep- it's like she was in shock. Then she woke up and just played for a little while. Now she's asleep again. I think she's adjusting to it. One of the miracles during the placement of the tube is that she did not throw up. We are very thankful.
For those who did not hear about the change to formula, they found blood in her stool. So they think there is a milk allergy.  They want to do the formula for at least 7 days and in the meantime I have to omit some foods that may be causing the allergy.
Michelle.
Below is Phoebes shortly before the procedure and then a pic of her after she'd adjusted to the tube.  Truthfully, the procedure was very unpleasant - for everyone.

Ron, Marie and Julia came at the height of it all - minutes before the tube and then welcoming Phoebe into our room upon our return from the tube placement.  It was good to feel their support as we left for the procedure and as we returned.
Right now they've gone looking for some real food for us all to enjoy - thankfully.  Michelle has not been excited about the hospital food provided for "mom".  I guess the dad just has to go out and kill an animal and fend for himself.
David.

7:30pm
Coral, our nurse today, just stopped the flow of the food to Phoebe's tummy as it seemed to be a little much.  She was showing signs of discomfort.
Now she's laying on her back for the first time on her bed (2 hours after the procedure) she's playing with Michelle and her necklace.

[By the way, Scott, the day before we left for Raleigh, Michelle put music to one of your favorite verses....maybe we should let it be a surprise.......or maybe we'll tell you now for fun.  Can you guess??? It has to do with old ways to walk on.............   got it??

Well, here's the scripture (it's been a real encouragement to us to sing over the last couple of days.)

Jeremiah 6:16
Thus says the LORD, "Stand by the ways and see and ask for the ancient paths, Where the good way is, and walk in it; And you will find rest for your souls. But they said, 'We will not walk in it.'

"Phoebe has had her aunts here for 1 hr  so she's fine now. " says Julia.

Well, i have arrived.  This is Marie speaking.  Everything seems to be under control now.  The tube is in - the new formula is being pumped in and Phoebe is sleeping.  We have to go now to find something to eat because we don't all have tubes.

bye!

Movement

O.K- we are about to go in to the treatment room where they will place the NG-tube. YEA! We're going to get more calories in her. She's already had a catheter placed in her twice today, so we are actually  hoping that this will be a couple of notches down in terms of trauma. It couldn't be better timing. She just had a wonderful long nap, and then she woke up and had a nice long feed from me. So, here we go. We'll write again after everything calms down. Thankyou for the comfort you have given us in your constant prayers for us.

Here we are at 6:20 in the morning. And it actually feels like we did sleep for most of the night. David and I are thinking of downsizing to a twin bed (ha,ha!) Sleeping in such close quarters was quite nice and snugly.
I fed Phoebe at 3:30 in the morning and unfortunately she threw up immediately. She got a bit stuffy during the night and that always makes her ultra gaggy. But I just finished feeding her again and so far so good. The nurse just checked in with us and we were able to ask her some questions. She said that Phoebe's urine is crystal clear and they are happy with her frequent pee-pee diapers (small as they might be.)
We are looking forward to a profitable day here as we move forward with the staff. I am so glad we are here getting help for her.

First Night at Wake Med in Raleigh

It's 11pm and Phoebe is nursing for the last time tonight.
We'll give a quick update and fill in more details tomorrow.

11:15
We're surprised but thankful to say that Phoebe is not hooked up to any tubes or I.V.
She's laying perfectly asleep now.
Once they've observed her tonight and tomorrow they will know what the next step is.
They didn't feel that she was seriously dehydrated so they were very comfortable simply running some tests and observing.

So far we're extremely pleased with the care she's already received and the staff seems to be excellent.

Phoebe did not throw up today even with her crying through some of the tests they've done. Normally she works herself into a cough and a gag when she cries. We're very encouraged. In fact, we actually think that maybe she is turning the corner and the worst of her throwing up is behind us. (empasis on "maybe"). Well, we're going to share this little hospital pull-out bed. We'll see how that goes!

The night before the NG-tube

Well, we have been on the phone most of the day lining up tomorrow's events as they will be placing the NG-tube in the morning. It looks like we will have to go to the hospital for them to place the tube and then another nurse will arrive from Fayetteville to bring the pump.(pole and bag). And they will teach us how to use it.
Before the weekend, I was absolutely dreading the thought of this tube being in Phoebe especially with her incredibly sensitive gag reflex. I wanted to believe that she might have an incredibly good weekend and not need to go that route. But we did the "pre-imposed weights" all weekend where you weigh the baby before and after feeds, and find out exactly how many ounces they are taking in, and the results were very sad although we weren't surprised. Saturday her total intake for the day was 11 oz. Sunday, it was 14.7 oz. And today, it was only 10. She should be taking in about 35 oz., to really thrive and grow, so that gives you an idea of how weak she is. Needless to say, my mindset is completely different today regarding the tube. Now I see it as a lifesaver and I can't wait to see more food going into her. Please pray that she will be able to tolerate it and that she won't throw up. Also that it won't be too traumatic as they place it down her nose. She is sooooo sensitive and gaggy.

Our First Blog!

Here we are but we should be in bed. It's 11:31pm and we are planning on waking at 5:00am to give Phoebe her first feeding of the day.

Today we think she got the most milk that she's gotten in the last few weeks.
Today we totaled 14.7 oz.
We are aiming to get 24 oz. into her in the very near future and we are praying (as are many, many people) that the Lord will touch her body and increase her appetite so she will want more and be able to hold more.

Phoebe threw up only ONE time today! and it was only about .5 oz.

REVIEW

Phoebe is 6 1/2 months old and has been labeled "failure to thrive."
She has been progressively losing weight and this morning weighed in at
9 lbs 9 oz.

David was 10.2 lbs at birth so we are extra aware of the fact that she is incredibly under weight.

We have many things to share and pictures too and will get to it as soon as possible.

We know that if you're reading this you care very much. Thank you for your prayers!