Day 13

We had another good day.  Piper had dialysis today.  It went well.  She is really starting to lose a lot of the water weight!  Our little baby girl had turned into a large puffy baby girl.  I am glad she is getting back to her normal size.  She looked so uncomfortable for a while, and I could hardly pick her up or hold her!

She played with some of her toys today in bed.  She laid on her side for a while as instructed by physical therapy.  They recommend that she doesn't do any twisting at the waist, and that she spends time laying on each of her sides.  She seemed to be happy on her side today!

We took a ride in the stroller this morning, and we went to Starbucks.  We shared some vanilla bean scones.  She really likes Starbucks pastries! ... so does Mommy!

We are both quite tired, so we are going to try to get a good night's sleep.  Good Night!

Prayers Are Working

Yesterday we enjoyed some good family time as we celebrated Father's Day!  Brian, Emma, Papa and Nana Bell visited us.  We even had some friends visit us in the evening!  They brought Piper some Mr. Potato Heads to play with.  We are so grateful for our family and friends.  We had some good news yesterday as well.  Piper had 119 mL of pee yesterday!!!!!!!!  That is not even including the poopy diapers!  This is big progress.  We hope to see an increase again today.  I think the Dr.s want to see around 400 mL per day. 

We were moved to a new room at 11pm last night.  It is a corner room, and it is larger!  The dialysis machines are in here right now.  We are able to have the machines hooked up, and we can have all of our things inside the room with the door closed!  This is a much safer environment!  Thank you for the prayers to make this happen!

Piper had a rough night again last night.  She hasn't been sleeping well, and she got sick this morning around 4 am.  We cleaned her up, gave her some Zofran, and she went back to sleep for a while.  She isn't eating well again either.  They have changed her "diet" today to a renal diet.  They are changing the formula for her feeding tube, and they will feed her for 20 hours a day with it.  This is not great news, but it is temporary.

Please pray that Piper's appetite improves drastically!  She has never been a great eater, but I think the Dr.s want to change that!  Please pray that her urine output continues to increase and also for her comfort and rest.  She seems very frustrated and miserable most of the time.  I look forward to seeing her play, laugh, smile and have real fun again soon!

Getting Better Every Day

For those of you who read my previous post, I apologize if it came across as rude.  I was just feeling very frustrated.  I care very much about all of the kids on 5100, and I pray that God will bring healing and comfort to each of them.  I just want us to have the space for Piper to safely receive dialysis treatments.

Anyway, it was a good day.  Dialysis showed up very early this morning.  Three and a half hours later, they were finally finished.  Piper's blood counts were down today so she needed another transfusion.  I thank God that so many people donate blood.  It really does make a difference!  If you have donated blood in the past, Thank You!  She did not eat that well today.  She can't drink much either.  We have to really watch her fluid intake.  We can't allow her to get too much because her body can't get rid of it.

I gave her a nice (sponge) bath tonight.  Our night nurse even got her a new crib with quieter side rails.  If you have any experience with hospital cribs, you will understand just how much of a blessing that was!

In spite of everything that our family is going through, we have a lot to praise God for.  We thank Him for the awesome surgeons, doctors, nurses and technicians here at Duke; for Piper being well enough to get out of PICU; for the amazing outpouring of love, support and prayers from family, friends, and so many people that we have never even had the honor of meeting!  God is great, and we know He has Piper in his hands!

Tomorrow is a new day.  Hopefully we will sleep well enough tonight to enjoy it!  ;-)

Day 10

It was another good day for Piper.  She sat upright in a high chair for the first time since surgery.  She ate yogurt, and she played with rice krispies.  She had another ultrasound today.  It showed increased flow in all 3 poles of her kidney.  She will continue to have ultrasounds every other day.  She will have dialysis again tomorrow.  She will probably continue with that every other day as well.  She is in a lot of pain now because of gas and pressure in her tummy.  They are giving her mylicon, and they are venting her feed tube, but it's still not helping.  She hasn't been sleeping well because of it.  Please pray for comfort and continued healing for Piper.

Some good news is that she has been smiling a bit more, and she laughed a few times today.  Her personality is starting to shine through.

Pictures

Here are a few pictures that we took over the past few days.  Some are from this morning.  Piper sat in a high chair for breakfast today.  The first picture is of big sister, Emma. 

Big Day

We are out of the PICU!!!!!!!!!!!!!!!!!!!!!!!!!

I can not express just how happy we are about this.  It is a big step!  They didn't have a room available for us where we usually go, so they put us in the step down unit (5300 unit) tonight.  It is just a step down from PICU.  Hopefully we will get a regular room tomorrow.   The best part is that I can sleep in the room with her!

Piper had a great day.  She has been talking more, and she even smiled and laughed!  Her blood pressure seems to be under control, and her heart rate is good.  She will continue to have dialysis every other day.  She will also have renal ultrasounds every other day to see if her kidney is showing improvement or not.  They removed her foley today.  That is the catheter that catches her urine output.  She is now peeing in her diaper again.  They will weigh the diapers to confirm how much she is peeing.  It's not much, though.  They also removed her last remaining IV from surgery.  She is losing some of the water weight, but not much.  She is a very large baby right now!  So, all in all she is doing well.

She is in a bit of pain because of gas.  The pressure on her abdomen really bothers her.  Please pray for rest and comfort as she heals.

A Lot Going On

The past few days have been very busy.  Piper had to have another surgery today.  She had a more permanent catheter placed in her chest to receive dialysis.  We hope she won't need this long.  Her kidney needs to start working better before they will remove it.  They did remove the temporary catheter, though.  She has been taken off of the IV blood pressure medicine.  She was placed on an oral medicine instead.  Her blood pressure is getting under control.  She has been eating regular food, but the Dr.s don't think she is getting enough calories and nutrients to support her body during the healing process.  Therefore, she had a feeding tube placed tonight.  She was not happy, but it will help her.  Hopfully they will remove it soon!  She has been having daily ultrasounds to monitor the flow in her kidney.  It has increased slightly in the top and middle poles, and it is starting to appear in the lower pole.  This could be a sign that her kidney is "waking up".  She is continuing to have dialysis.  We are hoping it will help to remove some of the puffiness and water weight.  She has absorbed so much fluid since surgery that she has gained over 5 lbs. this week!  She is now a very heavy baby!!!!  I feel bad for her because I know how uncomfortable it can be to have so much fluid on you. 

Some good news. ...  She has started to make some happier sounds and somewhat talk!  She has said "no", "uh oh", and "num num".  She has also played with some small toys and a stethoscope!  This is a big improvement.  We are so happy to see her personality coming around!  Also, she has started to pee, but it is very minimal.  We need a lot more!!!  We were told today that it is possible that we might be out of PICU by the weekend!  I know that that is not a guarantee, but it is something to be hopeful for!  They will move us to a regular room.  That would be so nice!

Thank you to everyone for all of the continued prayers and support.  Please continue to pray for Piper's comfort and healing.   Sorry if this is a bit of a ramble.  There is a lot to share, and I am too tired to worry about grammar and word flow.  ;-)