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.