Chloe loves her grandparents.

Chloe likes to see her grandparents every Saturday evening.

Chloe's grandparents have been regularly visiting Chloe every Saturday.  

The are frequent visitors of Chloe's blog as well.  

We took the pictures of them in Chloe's room for the first time.  

They are happy to witness Chloe's progress and to see her liveliness in her eyes and gestures.

We specially thank Chloe's grandma for preparing and bringing home-cooked dinners to hospital each week.  We are fortunate to have them in these difficult times.

Chloe's grandpa measured height for Chloe.  Her height was 52 cm.

And Chloe really likes to play with her dad, she is a daddy's girl.

Chloe has skin problem from prolonged skin covering by the TPN pick line dressing and tapes.

TPN IV line goes through her arm down stream to large vein near the heart.  Infection prevention is critical so the dressing on her arm has been very tight.

The picture shows Chloe's arm after taking off heavy layers of tegederm and tapes.  This obvious picture was not visible with layers of semi transparent tapes.  Nurses including attending, resource and NP's all have been saying it was okay, but Chloe's mommy had the correct instinct.  She called the IV team to come down to Chloe's room and to redress her arm in a different method so the worst skin area could breath air.  

The power match between the IV team members and the resource nurse of NICU floor was rather intense during the procedure.  She now has the minimum area of one tegedurm layer and tapes.  The "no-no" (soft cast to prevent her arm from bending) will not be used in order to minimize sweat at her arm.

14 ml/hr of breast milk today.  10.4 HAL

18 ml/hr of milk through NG tube is the immediate goal for now.  The intestinal rehap team had told us that when Chloe is able to intake 18 ml/hr, then they will let go of TPN line.  It will be a challenge and a blessing.

Chloe is busy

Chloe is too busy to play, cry, sleep and grow.

 

Sun, Nov.28 TPN dressing change.

Chloe was a very good baby.  She was especially well behaved during TPN dressing change.  The attending nurse Deana had discovered wrinkles on her TPN dressing and replaced the dressings.  TPN dressing is the coverings of the TPN pick line on her arm to prevent bacterial infection.  The procedure was done in a sterile environment with masks and gloves.  Chloe didn't cry so didn't need the sugar water.  Nurses was very impressed.  (According to the nurse by the way, Chloe cried a lot in the morning before her parents arrived at the hospital.  She loves her parents.)

 

Chloe breezed through the daily routine cares as well.  Temperature check, diaper change, ostomy bags check, blood pressure check, and weighing were no problems.

She is gaining weight well.  She is still well below the average but her growth slope is normal.  Her growth rate has increased even more lately. She is 8 lb and 4 oz now.

Her ostomy output has been lower (which is a good news) stools to diaper more often (good) and the numbers have been relatively consistent.   Seeing this the doctors ordered Chloe's breast milk intake level to go up 0.5 ml everyday since a little more than a week ago.  Today, the intake numbers were 11 ml breast milk, 12.4 HAL, and 0.6 ml lipid.

Thank God~~

Day 45

The result of sweat test is negative, so we can go forward to do the next step. RN Jenn changed Chloe's bags of ileostomy and mucous fistula at 7:30 am and took a bath for Chloe.

Chloe still has difficulty with her stuffy nose, but her rash on her face is getting better.

Total output of yesterday was 139 ml. Ups and downs~~ But she is growing. Chole is on 7lb and 8 oz last night. .

The sweat test has been done.

day 44

Chloe needs to be changed her picc line for TPN, because her picc line came off little bit. It has been done at 10:30 am at her bedside.

Chloe had a two hours trip to go 3 FL in main building for the sweat test. Finally it has been done at 1:10 pm. Chloe left her room at 11:20 am and came back at 1:20 pm with her mom and student nurse Magan because today RN Jenn had to take care of Kira, the next door baby . The result may get back to us until tomorrow noon.hope that works and be negative.

Choe has rash on her face about seven days, it's getting worse. Is it really infant face rash?
And she has difficulty with her stuffy nose.

Chloe is on 7 lb and 6 oz last night. Total output was 122 ml yesterday. It's less than the day before.

Nov. 17, 10 - The sweat test has been changed

 Day 43

The schedule of sweat test for cystic fibrosis has been changed to Nov. 18, 2010 at 11:30 am. Today nurse, RN. Jenn changed chloe's bags for ileostomy and mucous fistula yesterday and today morning too :( Jenn's skill was much better than yesterday morning. hope it works as long as~~~~~.

Chloe had high volume of outputs from her ostomy during the last three days, everyone was aware of the high volume. Therefore her feeding speed of breast milk thru NG tube still remained 7 ml per 1 hr. However medical team decided to increase the volume of TPN IV to 13.2 hal, 0.5 lipid because Chloe is on 7 lb.

Total output was 177 ml on yesterday. But Chloe has 54 ml until 5:00 pm on today, which is half of the amount of yesterday at the same time. It is less than yesterday. Chloe was losing weight little bit because of the high volume of output from her ostomy. She is 7 lb and 5 oz last night.

Chloe has been sleeping all morning :) she seems tired.

Even when the physical therapist came to her, she was too sleepy, so Chloe needs to do it later.

Pictures from Fri, Nov.12

2010-11-12 164515_Waking up_.MOV

Thur, Nov.11

Chloe was fussy today.  She cried unless she was held by her mommy.

The team from intestinal rehabilitation came and said that the breast milk feed level will stay at 7 ml/hr until Monday.  That will be total of about a week at 7 ml/hr and 4 days at 6 ml/hr previously.  Since Chloe had vomited at 8 ml/hr level before, the hospital is proceeding carefully and slowly with adjusting milk feed volume through nose tube to stomach.

As of now 7 ml/hr breast milk to stomach is 38% of the total volume of her nutrition.  The remaining 62% comes from the TPN IV line providing proteins, dextrose, vitamins, and lipids.  

Chloe stooled on diaper lots well at 1:30 pm.

Today's nurses were Kristine (day time) and Betty (night time)

Yesterday's nurses were Jen and Lisa.

Blood sample was taken from her foot.  Mondays and Thursdays are the routine blood test days for Chloe.

Ostomy bag is intact for 4 days since Sun, Nov 7.

Mucus fistula bag was replaced yesterday (Wed, Nov.11) and was intact today.

As of 11 pm, Chloe is sleeping well ^____^ according to the nurse on the phone call made by Chloe's mommy.

Wed, Nov.10: Meeting with surgeon

We had meeting with Surgeon Hedrick. It was a beneficial meeting for us because she cleared up several important questions of ours:

(1) She plans to do stoma-reversal surgery on Chloe at the end of december or early january. In theory, ideal time for reversal is 9-12 weeks after stoma surgery.

1a) 16 ml/hr intake through her stomach is not a requirement for the second surgery.

(2) Chloe has all 3 sections of small intestine: duodenum, jejunum, and ileum, although each length is short except duodenum. She has ileocecal valve.

2a) She has 19 cm of ileum. Ileum is important for absorbing fat-soluble vitamins (A,D,E,K) and vitamin B12. 

For reference, a person without ileum requires shots to supplement meals.

(3) Chloe will not be discharged prior to second surgery (stoma reversal). After second surgery, Chloe will be taken care of at CHOP until she is ready to go home. Depending on her feed speed at that time, TPN may be administered at home after discharge.

Other information:

Blood tests are on Monday and Thursday each week. This monitors her liver function by measuring content detail of blood.

Pictures on Tue, Nov.9

2010-11-09 173318_crying during tpn line change_good acting.MOV

Chloe cried a lot today. She now cries when she anticipates pain or discomfort. Such ocassions would be blood sampling from her foot, TPN IV line replacement, ostomy bag reattachment, and sometimes diaper change.

2010-11-09 180916_playing with pacifier.MOV

Chloe likes to hold hand before going to sleep.
In the video she does a little trick with her pacifier at about 8 seconds mark.
She weighted 3.110 kg up 25 g from 3.085 kg yesterday.
Attachments of ostomy and mucus fistula bags stayed on without leaks.
Milk 7 ml/hr + HAL 10.6 ml + lipid 0.5 ml = 18.1 ml
Chloe's ostomy output was still liquidy.  Diaper stool at about 6 pm - pretty good although not as good as yesterday's.
Attending nurses, day time: Jenn, night time: Lisa

There was no meeting with Dr. Hedrick today.
We expect to have meeting with her this Thursday morning during her routine scheduled visit at NICU unit.

Mon, Nov.8

Upon our arrival, we checked her belly first. Her right side (refeeding bag) had leaked. After discussion with the attending nurse (Dementra), we decided to patch the section of attachment that was leaking instead of re-attaching new. Two reasons for this decision were: (1) The leaked amount was relatively small and has not fully soaked the neighbor area. (2) To avoid skin irritation by minimizing number of re-attaching the stickys.
Chloe's belly was cleaned and dried using oxygen air tube. Daddy completed patching process successfully.  Chloe stooled well on diaper.  Output to ostomy was still liquidy but volume of it was less, so it is a promising sign.
We are told that meeting with Dr. Holly Hedrick is scheduled for tomorrow 12:30 PM.  We are looking forward to this meeting.
Second sweat test is scheduled for Nov.19th.

Sun, Nov.7

Nurse (Kate) told us that Chloe's bags leaked at night and both bags were replaced.
Later in the evening her new ostomy bag leaked again. This totals 9 leaks in 5 days resulting in 5 incidents of skin sticky re-attachments of either or both sides at a time.
Finally Chloe's daddy took charge and replaced the skin attachment of ostomy bag himself.
Chloe's mucus fitula (right side) bag also showed slight sign of foreseeable leak. After discussion with the nurse, that side was left alone.
Chloe's weight remained the same today. Output from her ostomy is still liquidy. Fortunately the output to her diaper is pasty.

Wearing her outfit 2010 11 06 154136

Sat, Nov.6

Refeeding bag leaked from the space between the tube and the whole through the bag. It is unfortunate that the bags are leaking everyday for past four days. In the evening, one of the brand new attachments leaked again.
There have been 5 bag changes and 2 patches. In past 4 days, bags leaked 7 times.
Having the sticky patch replaced often is very rough on her skin.
Neverthless, Chloe's demeanor is calm and cool. She's a pleasant girl.
Today's numbers were 7 ml/hr milk, 11.6 hal, 0.5 = 19.1 ml/hr total intake.
Output from ostomy is liquidy. Stool on her diaper is good.
Her weight was 6 lbs 13 ounces.
Chloe's grandparents came to see her.  Chloe wanted to play with her grandparents but she fell asleep.
Some pictures from earlier the day:

Fri, Nov.5

Chloe had high volume of liquidy stool. 28ml of output in 4 hours was too high. Therefore her feeding speed of breast milk thru tube was decreased from 7 to 6 ml/hr. The refeeding speed is calculated to match the speed of output thru ostomy. At current time it is 7 ml/hr.
Output of 28 ml in 4 hrs was 7 ml/hr. is matched by refeeding of 7 ml/hr thru mucus fistula.
Chloe smiled frequently today. She smiled at her mommy often throughout the day, and at daddy in the evening. She is also sleeping well.
We were informed by Missy, the nurse practitioner that Chloe is expected to stay at NICU thru at least the remainder of this year.
Today's numbers were 6 ml milk, 11.6 ml hal, 0.5 lipid = 18.1 ml/hr total.

2010-11-04 205707_TPN No-no.MOV

2010-11-04 210711_Singing.MOV

Chloe didn't sleep much last night.
Team of intestinal rehabilitation came at 2:15 pm. They come once a week every Thursday.
They said Chloe is doing well by gaining weight.
Feeding 6.5 ml/hr breast milk with special fat mixed in, 10.3 hal, 0.6 lipid.
Since her last throw-up, doctors have adjusted the acceleration of breast milk feeding by going very slowly.
4 days at 6 ml/hr prior to today at 6.5 ml/hr.
Chloe stooled through rectum at around 7 pm, first since 4pm yesterday. Stool from ostomy was good as well.
Both right and left bags leaked in the evening.  We put new attachments and replacement bags.  Grace has good skills for ostomy bag change.
Sweat test from a few days ago came out inconclusive due to insufficient amount of sweat obtained at the time of test.  Next test will be in 2 weeks.

Wed, Nov.3

Chloe's ostomy and mucus fistula bags' attachments to her skin leaked.  Her mommy and nurse replaced both bags.
At night, she had her hair and feet washed.  She weighted 6 pounds and 9 ounces.  She has consistently gained weight.
Her feeding rates are 6 ml/hr of breast milk, 10.3 ml/hr of HAL nutrition, and 0.6 ml/hr of lipids.  Refeeding rate of stool to mucus fistula is at 4 ml/hr.

Yawning on Nov.1

:) Weighting on Oct.30

Wed, Oct.27

Wed, Oct.27