Miss Cool and Update - February 9, 2005

Here is a picture of Jadalyn in sunglasses taken by her nurse Lidia at her

Pediatrician appointment today. Doesn't she look adorable. :) She came

home from CHLA last Sunday. They kept her for a week + 1 day and ruled

out any shunt issues on day 1. No infections either, yeah! We were on the

5th floor this time because the 6th Floor was full to capacity so we had a

new group of people to get used to. Also, I was dealing with the Nurse

Practioner for the Gastro-Surgeons as well as the House Pediatricians. There

were about four of them during the one week. Lots of people, nurses, etc. The people on

the 5th floor are super nice. We ended up in a room with three other kids, not

so fun... not too quiet, but what can you do. The hospital is just full, full, full, so

we couldn't move to another room. We did ask every day though! Nana stayed

during the day and I stayed during the night and George relieved me for some

time on Friday and Saturday. Jadalyn had three I.V.'s all together. The first one

failed right away, the second lasted a few days and the third one lasted about a

day. By that time she was back on full feeds and so she didn't need an I.V. anymore.

Yeah! They figured the problem (gagging, trying to throw up, turning blue) was reflux

related but they weren't sure how to fix it. They went back and forth with the surgeons

and it was so odd for me not to speak with them directly but instead to either a Nurse

Practioner or to the Pediatricians. I felt very out of the loop. In the end they decided to

vent her J-G tube and found out that formula was going back into her stomach and so

they did a dye study to see if the J-G was still working. Nope! So they had to replace

it AGAIN (this is the 3rd time). And guess what, no more formula in the vent bag. Yeah

again! They increased all of her reflux medications as well. Everyone was totally against

surgery (there was a possibility of a Nissen Surgery - wrapping part of the stomach around

the esophogus to keep secretions/food from coming back up / or putting a separate G tube

and J tube) The nurse practitioner kept saying, do you WANT surgery, uh no.... I don't, I just

want to do what is best for my little babuska... I didn't care for her too much. Anyways... I felt

a bit out of my element with the new team but tried to keep it together and be professional as

always. The professional hospital mom that is! So Jadalyn is home and she is doing better

and everything is working the way it should. So keep your prayers coming. Thank you for your

love and support.

Love,

Liz, George and Baby Jadalyn (17 months strong!!!!!)

Jadalyn back at the hospital as of January 29, 2005

Jadalyn began trying to throw up on Friday evening. We switched her to Pedialyte,

hoping that would help. But throughout the night we had to keep turning her feeding

pump off and on. By morning we knew we had to bring her in to CHLA. We gave her

tiny bits of Pedialyte through her G-J Tube until she started to try to throw up and

turn blue (twice) in the E.R. We were there from about 11am to 12pm. Then they

transferred us to the 5th Floor. Usually we go to the 6th Floor but they were

completely full. They finally got an I.V. started at about 12:30 (in the evening)

after about eight tries. That was traumatic. She was on I.V. fluid only until yesterday afternoon. Then they started giving her a small amount of Pedialyte in addition to the I.V. They will slowly

increase the Pedialyte and wean her off of the I.V. fluid. They have also increased

all of her dose amounts for her Reflux Medication because we all believe that is what

is causing this problem. Also she was very backed up (they did a x-ray of her intestines -

along with the usual CT Scan and tapping of her shunt (all Neurological tests were good and

her ventricles have actually become smaller leaving more room for brain growth!!!! Yeah!!!)

The doctors and us would like to avoid the Nissen Surgery (where they wrap part of the stomach around the esophagus so that no stomach secretions can come back up into Jadalyn's throat/mouth - causing her to turn blue and not be being able to breath) So now it is just a wait and see situation. Now that she is not turning blue and feeling nauseas she is happy go lucky and was up most of the day yesterday. We turned in around 10pm. I will

send another email later in the week. Hopefully we will be home by then! :)

Love to all,

Liz, George and Baby Jadalyn (she is now 19.95 pounds as of Saturday!!!!)

Channeled Angel Message for Jadalyn - January 15, 2005

Hi there,

Jadalyn's volunteer Massage Therapist, Merry, went to an Angel Healer

last week for a reading.  Merry asked me if I had any questions for her about Jadalyn

so I gave her three questions. And this was the "channelled" response, it made me

cry when I read it. I love my baby so much

Dearest Mommy,

I respond to your anxieties... we are so soul connected ... how could I not. When

you worry, I feel it so though I cannot speak, I do say... "Mommy it's okay... I'm okay,

Don't worry".

You are the most wonderful Mom. Your caring constant love, hours of care are all I really need. It is my pleasure to be in your life, being your daughter. It is my assignment to work as a "disabled" being to bring great awareness to so many that otherwise would not have the concepts or understanding of my afflication or situation. I am a happy soul!! I am a happy girl!! At night I run, play, sing, jump and visit all my loved ones at home. I am free at night, I am free. (This last part just made me cry again)

If I could ask for one wish Mommy it would be that you receive back in return all that you have given to me. I ask God to give your heart comfort and peace on my "bad" days because I see your heart so heavy and sad.

I love you Mommy and have always felt so blessed to be your daughter no matter what Mommy, we are a "team" and we are all working together serving God.

Jadalyn

Jadalyn in and Out of CHLA - January 5, 2005

Yesterday Jadalyn's feeding pump started beeping at us at 4 in the morning. We

tried to flush some water through her J-tube and it would not work at all. It was

blocked. That is the tube that goes into her intestines and her food goes through it.

So we tried to put food into her G-Tube (it goes directly into her stomach) and she

would start throwing up. So we tried to give her tiny amounts of pedialyte through

her G-Tube to keep her hydrated but it wasn't working out. We started calling Children's

Hospital and her Gastroenterologist as soon as their offices opened and by 11:30 we

got our answer, we had to take Jadalyn in to Children's Hospital and have her G-J tube

replaced. This had to be done as an outpatient surgery in Radiology. The only good

thing was that she did have to be sedated or "go under" for the procedure AND her

Daddy was able to stay in the room with her. He assisted by keeping her arms raised

during the procedure. They have to do it in radiology to make sure that the tube is

going directly into her Jejunum (part of her intestines). Everything went well and they

were done within a half hour. I a was nervous wreck, waiting and hoping for the best.

Luckily Jadalyn's Nana was there with us to lend emotional support. Thank you once

again Nana! We were able to leave the hospital right after the procedure. Jadalyn was

pretty uncomfortable and whining and crying. She did throw up on the way home and

had trouble breathing but once we got her home and settled she was fine and has not

thrown up since. Thank God! So she is home and we are praying and keeping our fingers

crossed that the tube was the only problem and she will be home to stay.

Love,

Liz, George and Baby Jadalyn

Jadalyn Update - back at CHLA as of 12/15/2004

Jadalyn just went into the hospital again last Wednesday (12/15/04). She was throwing up a bit at home and turned blue around 10:30am so George and Lidia took her to Children's Hospital. She turned blue again in the E.R. so they admitted her. They took blood, did a CT Scan and a Chest x-ray, tapped her shunt, tested the fluid. All the usual stuff and everything came back negative. No infections (in her shunt or in her blood), thank God! But she did have a little bit of a cold (cough/runny nose) so they have in isolation (her own room and everyone

has to wear a mask when they are in there with her). So that way she will not spread her cold to others on the floor :) and we have lots of privacy (a first!!!) They ended up doing a flouroscopic surgery (in Radiology) to put in a Pic line (more permanent I.V.) and change her G-tube to a G-J Tube which bi-passes the stomach and goes into the intestines (Jejunum - I'm learning more anatomy/physiology again...) which they are hoping will alleviate her Acid Reflux / vomiting and breath holding spells. Now we just have to wait and see and hope and pray for the best. They are sending her home on an apnea monitor, although I don't really think it is necessary... Well, she should be coming home either tonight or tomorrow. They had to reschedule her ear tube surgery. She will also be having a repeat swallow study, repeat sleep study and a neurological consult in the near future. She will also be followed by the Pulmonary Team at CHLA. So lots more appointments in the near future. Jadalyn is feeling better, back to her happy, hand talking self. So George and I are thrilled and relieved for the moment. Sorry this is so late but I had to leave work early on Wednesday and didn't come back until today so I didn't have access to a computer for e-mail.

Love and Hugs to everyone

and Merry Christmas

Liz, George and Baby Jadalyn

Sleeping or lack thereof!

I currently sleep in the girls room on a twin bed with a lumpy mattress and usually with Lily. The babies sleep in their crib, to start, and then one by one they wake up and want to nurse. Then I put them back in the crib and then the next baby wakes up and I nurse them and put them back. Sometimes I move out to the couch, sometimes I move to Lily's toddler bed, I'm all over the place. Need less to say, I do not sleep very well and am awakened 8 to 10 times a night by Poppy, Violet and Lily. Some day I will sleep again! A whole eight hours in a row. That would be absolutely fabulous. The hardest part is getting the girls to sleep. Lately I find around 8pm I am READY for sleep. However, the girls usually are not and I get very anxious and irritable. I need to change this cycle some how because they usually do not go to sleep until 9:30! By that time I'm DONE!!! I have a little routine of dinner, bath and jammies. Then reading books but they just want to play. I'm going to try the routine a little later to coincide with their normal 9:30pm bedtime. We will see. I just find myself relating to that book "Go the f*** to sleep" way too often lately.

Thinking of Jadalyn

Today my dear friend from childhood, Kim, came over for a playdate at the park with Lily. She brought her three kids, Alex, Anthony and Emmy. The kids had fun playing on the jungle gym, going down slide. Kim and I sat on the side watching over them she asked me how I was doing with the loss of Jadalyn. I started talking to her and the tears were welling up in my eyes. Talking about the feelings in the past year, it is beyond words. I'm thankful that she asked me about Jadalyn and for being able to talk about her and the loss.