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.

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

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!