Sewing - life lessons

I'm taking a sewing class at Conejo Valley Adult School. The teacher was a school teacher for many years, a mother and now grandmother with lots of wisdom to share. We were going around the circle introducing ourselves and she got to talking about bettering yourself through education. She said that you should always be taking a class, moving forward, having goals. She said that is your insurance policy in case you are on your own for whatever reason, death or divorce from your spouse. You will have an education to fall back on. I agree 100%. I always feel driven to complete my education. I've been going to school for years taking Chemistry, Anatomy, Physiology, Medical Terminology, determined to work at some point in the medical field. I've thought about medical billing, nursing, occupational therapy assistant, all towards the larger goal of completing my bachelors degree in psychology / biology and getting a masters in genetic counseling. My "big" dream is to become a genetic counselor and I have no doubt I will, some day!!!

Email to T16 Group ~ December 14, 2004

My name is Liz Sidener. I just joined the Trisomy 16 group in the last few weeks.
I have received a few e-mails and pictures and I am amazed at the similarity to my
little Jadalyn. She is now 15 months old. She has an Unbalanced Translocation:
Monosomy 6, Trisomy 16. I still do not have the final karyotype but I'm working on
it from her genetic doctor. She was born September 3, 2003. We had no idea that anything would be wrong and so I gave birth at a small hospital close to my home. My water broke over the weekend but I didn't have any contractions so Tuesday I went in to the hospital. Still
no contractions, or very little and not consistent. I ended up getting every intervention
known to man! Pitocin, Epidural and the next day a Cesarean Section. Through the
whole thing Jadalyn was fine, no distress, no clue to her health status. When they
cut me open and pulled Jadalyn out they knew right away that something was wrong
and gave each other a look. My husband sensed right away from their actions but
did not want to freak me out so he remained calm. They whisked Jadalyn away and I
really didn't know what was happening. In the recovery room the nurse brought Jadalyn
in and said that something was wrong but they weren't sure and so they had to bring
her to another hospital in our area with a NICU. This still makes me feel so teary. I have
a lot of unresolved issues about her birth and everything else... She ended up getting
transported to Children's Hospital Los Angeles the next day by helicopter. I was stuck in
the hospital recovering from my surgery and my poor husband was going back and forth
between the two hospitals visiting us. What a trooper he is. The reason I never had
contractions, really, was because Jadalyn has hydrocephalus and so her head was large
and she could not descend into my pelvis. Jadalyn has a lot of health issues due to her
chromosomal abnormality: hydrocephalus (she has a VP shunt), two holes in her heart (ASD/PDA repaired), displaced hips, club feet, malrotation of her intestines (this was repaired) Also, she could not coordinate her suck/swallow reflex and would gag and choke on the least amount of food. So they placed a G-tube in her tummy so that she would get enough food to nourish her. After she had been in the NICU for almost two months they suddenly had a meeting with us and told us that they thought she would not live, would not grow, would not development and if she did at all she would be severely retarded. We were shocked beyond belief. Someone had screwed up and not told us this long before. After her last surgery in the NICU (Malrotation and G-Tube) Jadalyn began to have respiratory distress and different problems. She has laryngomalasia (floppy airway and epiglottis) and so they were concerned that it was not strong enough to stay open and allow her to breathe on her own. We did not want to do a tracheotomy due to her prognosis. So they told us to come back the next day and she was going to die. Oh my God, I can not tell you the anguish we felt. But she didn't die when they took the breathing tube out. She just kept breathing. She came home a week later with a hospice nurse. She kept breathing (although she was O2 dependent 24 hours a day for quite a few months - now she only has it at night). She kept growing. She is now 26 inches long and 19 pounds. She kept developing (albeit slowly - she is VERY delayed - possibly at the development of a 1-2 month old) and she does respond to us and those around her and she did not fade away (as predicted by the NICU doctors). She is very strong (strong willed too!) and has wanted to be here every step of the way. She kept going under the radar from the time she was conceived. I had every prenatal test known to man and due to the rarity of her genetic condition, it was not detected on the amniocentesis or my 3-D ultrasound. So it was a total surprise to everyone when they finally had to do a c-section and she had a very large head (due to the hydrocephalus) and her body was twisted up (both of her hips are displaced and she has club feet). She looks much better now than in the early days. She is my little beauty queen! She had 5 glorious months of no hospitalization, coming off of oxygen, doing well and then last July she was hospitalized for two months due to a yeast infection in her V.P. Shunt (in her head). I took time off on the California Paid Leave Act (a Godsend!) and lived at the hospital with Jadalyn. She has had about 4 - 5 shunt revision surgeries since July. She has been in and out of the hospital every three weeks and now I'm just resigned to it. The last time she got a gastro-intestinal flu and got dehydrated. Her "trick" is to hold her breath and turn blue. That is what almost almost leads us to taking her to the hospital. That and vomiting. Right now she has a cold but she is recovering and I am so thankful. This week she has to have a short surgery to put tubes in her ears. She had an ABR Hearing Test in the hospital in August and they could get no response and thought she had complete hearing loss. I could not believe this as she does respond to music, our voices, etc. So they said we should have the test redone after she had recovered from her shunt surgery. First we had to see an ENT (Ear Nose Throat) doctor to see if she had water in her middle ear. Well, it turns out she has water in both of her inner ears and so this could explain her aversion to moving her head (possible inner ear/equilibrium issues) and also could improve her hearing. Yeah! So I am excited that this will be a positive surgery for her and wait to see how she responds during her healing time and beyond. She is a trooper, a fighter, a winner and I love her deeply. She has definitely changed my life for the better! Here is the most recent pictures taken of her. She is most comfortable in a reclining or side lying position but she is getting stronger and more able to sit up with our assistance lately. I look forward to being a part of this group and learning from everyone.

Warmly,
Liz Sidener
Mother to Jadalyn Sidener (Monosomy 6, Trisomy 16)

Jadalyn Pic - Nov 2004

Jadalyn sitting on our bed. She is wearing a little overall that her Nana made especially for her.

message from a dear friend - Jadalyn is my teacher ~ Jan 4, 2004

I think Jada is your teacher actually - you are seeking outside of the self, when you have already been transformed is what my angels are saying.

You can do anything you put your heart to, and your inspiration is Jadalyn. She is at the heart of everything. I DO feel strongly that you have set awesome goals, but that her care since it is at the heart-and she will need some constant care and focus for a while. If you plan online courses where you can study and hold her too, that would be optimum. Your goal in helping other Moms is so great too, and I see you focusing on Mom's with special needs children, giving them hope when the medical community has them hopeless and frightened.

I see you with more children - a boy and a girl, seems like twins. They are both born normal, the boy is very smart and the little girl is playing with a doll. There is a age difference in them and Jada of about 4 to 5 years though.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

This email from my friend was right on! Jadalyn was and is my ultimate teacher! Taking care of her did take most of my time and my education plans are taking longer than expected but it's good to always keep learning and growing and changing. I'm on the path. I did have three more children. First Lily, 4 years after Jadalyn was born and then twin girls, Lily and Poppy in November 2010.

Jadalyn Update ~ September 23, 2003

Jadalyn had her surgery yesterday it was successful. They put a clamp on the vein that was supposed to close automatically at birth (PDA) and they opened her little heart to close a hole between the left and right chambers (ASD). She is in the cardiac/thoracic unit and will be going back to the neonatal ICU soon. Liz said that her color looks better already and they are weaning her off the ventilator already.

Keep praying that she continues to do well!

Jadalyn Update - November 5, 2005

Some of your are on my work email list and have received two of the three recent pictures of Jadalyn attached. She continues to do well and stay healthy. She had problems with recurring seizure activity during the past two months but she seems to finally be on the correct dose of medicine and has had no seizures in two weeks now. She continues to enjoy being propped and sat up more and more which is wonderful as well. After a year long wait she is finally having her ABR Test (Auditory brain stem response test) which is a test for hearing and brain (neurological) functioning.

The ABR test involves attaching electrodes to her head to record electrical activity from the auditory nerve (the hearing nerve) and other parts of the brain. The test will be done at the UCLA Audiology Clinic under General Anesthesia. She has had two previous ABR Tests at Children's Hospital under Local Anesthesia. However, she has a very bad reaction to the medicine and got agitated and frothed at the mouth. In order for the test to be accurate she must be completely still and asleep. So please say a prayer tomorrow that everything goes smoothly. It is a two-hour long test.

I have great news on the job front. I start a new job at a Commercial Insurance Agency called Scanlon, Jacobsen, Guerra and Burke on Monday, November 13th. I will be an Account Manager again and the team I'm working for seem to be a wonderful group of people. I'm looking forward to a challenging and rewarding work experience there. My friend Jeff Pfaffenberger referred me to the job and has been working there for three years. He said that the Company is a great place to work, especially the group I will be working with. I know my new boss, Paul Burke, from the original time I worked at Scanlon, when it was Scanlon & Associates, 10+ years ago. They have moved from Calabasas to Warner Center since then and most of the employees I knew have moved on a long time ago. I'm also looking forward to being close by my Mom, my Aunt Mary, my Great Aunt Kitty and my friends Tammy and Maryann. Tammy and Maryann have already promised to be my new walking buddies! It is a good increase in pay and position.

I will be sending out our annual holiday picture card and holiday letter so I'll leave it at that.

Love and Hugs to all!

Liz, George and Jadalyn

p.s. Jadalyn weighs 30 pounds and is 31 inches long!!!!

Studying while holding Jadalyn

Studying for my CNA course while holding Miss Jadalyn.

Jadalyn ~ Laughing Buddha Baby ~ November 2005

The best sound ever was Jadalyn's laugh. Looking at this picture, I remember it well. So sweet!

Jadalyn and I ~ Halloween 2005

Jadalyn Update - May 14, 2005

Jadalyn is back at CHLA since last Tuesday (May 10th). For the past four weeks she has had a seizure, one a week, on Fridays at my Mom's house. Very strange. Then on Friday, May 6th, she had a seizure at my Aunt Mary's house. We had just left my Mom's house. I was beginning to wonder... is it something at Mom's. It was just so coincidental. We had visited CHLA/ER after the second seizure (the first one we weren't sure what it was and she had no reoccurrences that day so we did not bring her in, thinking it was reflux related). The ER at CHLA did a CT Scan and XRays and blood work and urine work ups but everything was fine, as far as they could tell and so we went home. They referred us to a Neurologist in Hollywood until we could get in at the Neurology office at CHLA. (They have an extensive waiting list!) I brought copies of Jadalyn's CT Scan radiology reports and the CT Scans on CD. He looked them over and Jadalyn and said to get an EEG and to videotape her if she had another seizure. Also, to bring her back in a few weeks. Then last Friday she had a seizure at Mary's and it lastest more than 4 minutes so we called 911 and the Paramedics came. When they arrived Jadalyn proceeded to start turning blue (after the seizure was over) and it looked like she was having a reflux/throwing up/turning blue event, so the paramedics decided to take her to West Hills Hospital. She and I got in the ambulance and went down there and Aunt Mary followed us in the car. They kept us there till 12am, did a CT Scan and were in contact with CHLA. They couldn't find anything abnormal from her previous CTs and they were unable to get her blood for testing. So they sent us home and we searched for hours that night for an all night pharmacy who sold the anti-seizure medication (to be given if she had a seizure / Diastat) We finally found one that had it but they couldn't access our pharmacy insurance. So we finally gave up and went home and got it the next day. Jadalyn was home and doing well and then Monday at about 4pm Lidia (Jadalyn's Nurse) called me at work and said that Jadalyn had thrown up a lot and it wasn't like her. So I rushed home and then she and I drove to CHLA. They did all the usual work ups and x-rays and everything looked okay so they sent us home late that night. Then the next morning we got a call that they thought she had "free air" in her abdominal cavity (the place where all your guts are located and where "air" should not be.) so they wanted us to come back and get further testing. So we had to go through the whole ER Triage process again and were in the ER room when she started turning blue. So they transferred us to their more equipped rooms and got the oxygen going and were trying to get an IV when she started to have a seizure. It just went on and on. Not too strong and then stronger and then going back to small shaking. While they tried to get an IV. She did not cry and try to get away and this scared me more than anything. I really felt like something was wrong. But they said she was unresponsive due to the seizure activity. Horrible... They finally gave her ativan (one dose R and then when they got the IV going again because the first did not work) and the seizure stopped. Thank God! She was super sleepy and slept for the next 6-8 hours. They got her blood and sent everything to the lab. They did a CT Scan of her abdomen and her head. They found that there was no "free air". What they did find in her blood work was that her sodium was very low (around 122 and it should be 135 to 140) and

they said that this could cause seizures. So they started and IV and have been giving her Sodium for the past several days. Her Sodium levels are back to normal and she has had no Seizures since Tuesday but she had to have normal Sodium levels for several days before she could be released from the hospital. They also have revised her amount of free water we give her in her J Tube and when we can give it to her. Which is now separate from the time we give her formula. So some changes there. All medications remain the same. phew!!! So they decided on Friday to reschedule her Nissen Fundoplication surgery for next week. We will know more details on Monday. That is the surgery where they take part of her stomach (fundus) and wrap it around the esophagus so that no food/stomach fluids can travel back up her esophagus from her stomach. Therefore relieving her Reflux/Turning Blue episodes. She will also go back to being fed in her stomach instead of her Jejunum (which is in the intestines). They will do the surgery Laproscopically (with 3-5 small incisions instead of one large one which is considered "Open") and as long as they are successful they can do the surgery this way. Otherwise they will have to do an Open Nissen. So pray, pray, pray for that. So life has been crazy lately (to say the least) between going between CHLA, School/Nursing Home and Work. I am sorry to all if I have not been my efficient self and if I have forgotten things or not returned phone calls and done what I'm supposed to in a timely manner. I've just been so worried and busy and in a funk and daze. Thank you for your understanding during this time. My Labor Assistant workshop is this coming weekend (finally) and I look forward to being done with that and just doing Jadalyn Stuff, Work Stuff and School Stuff. School is challenging but rewarding. I am learning so much!!!! Just wish it wasn't such a crazy time. I am still looking for 4-6 women who are 30+ weeks pregnant by next Weekend for my seminar and I just do not have the time to put flyers up, so if ANYONE knows of someone who could spend about 2 1/2 hours next Saturday at our workshop (and fits the bill) please, please, please, pass them my way. This is my final workshop duty, besides setting up on Friday and attending the workshop myself. Thank you all for your love and support. We love you!

P.S. Jadalyn is stable now and back to being her happy self. She is just waiting at the hospital for her surgery next week sometime. She will be home a few days after that.

Love and Hugs,

Jadalyn, Liz and George

Happy Mothers Day Message - May 2005

HAPPY MOTHER'S DAY TO YOU!!!

You are a great mother to little Jadalyn - no wonder she chose you!

~Merry :)

Jadalyn Update - April 11, 2005

The Thursday before last Jadalyn started getting barfy again. It worsened over that

weekend and by Monday she had turned blue a few times so we had to take her to

the E.R. at Children's Hospital. We were concerned that it was her shunt acting up

because she had been so sleepy and lethargic over the weekend so we had them

do a CT Scan. They also took her blood, urine and did an x-ray of her tummy area.

She had a little blockage in her bowels but nothing major. The only thing they determined

was that she was a little dehydrated from her food being on and off over the weekend.

Other than that, nothing was really wrong. So we got no answers and determined that as she

is still having these episodes every few weeks and ending up in the E.R. that we are going

to discuss the Nissen surgery (where they wrap part of her stomach around her esophogus

so that food, bile, etc. can not come up into her esophogus and make her feel like vomiting)

with Dr. Mahour. Dr. Mahour did her original G-Tube placement surgery and Intestinal

Malrotation Surgery. We spoke with Jadalyn's Gastroenterologist the day after our visit to

the E.R. and he agreed that this is the next step we should take, sooner rather than later.

I am scared about the surgery but hope with all my heart that this will help our little Angel

Jadalyn to feel her best! I will let you all know when the surgery is scheduled so we can pray

REALLY hard!!!!!

Jadalyn is doing well otherwise. She is moving more, hearing more, seeing more, doing more.

Tolerating movement more. All good things! She is happier in general and is smiling all the

time and laughing too! Which makes me and her Daddy so very happy too!

This week our schedule will be changing as I start Certified Nursing Assistant School.

It is three nights a week for 12 weeks so Jadalyn and I will be spending the night at my Mom and John's (aka Nana and Papa) on Tuesday nights. Lidia will watch Jadalyn on the other two nights. I will be working at Aon for 2 1/2 days a week now until June 29th when my school is finished. Then we'll see what new and exciting things happen!

We are still working on getting the hearing aides. We are dealing with California Children Services and they sure make you jump through a lot of hoops! I'm hoping to have them all their paperwork today so we can get moving with that.

So that's whats new in our world. I'd love to hear from any of you out there!

Love and Hugs to all!

Liz, George and Baby Jadalyn

Jadalyn Update as of March 15, 2005

I wanted to send everyone an update on Jadalyn. She is at home, doing well, since her last hospitalization in January. Although we have been back and forth during that time to CHLA, our most beloved place, haha!!! So let's see what has been happening? She had tubes placed in both of her ears by the ENT (Ear Nose Throat) Doctor at CHLA. His name is Dr. Maceri and I really liked him. He was very nice and professional. He did a good job. There was a little bit of bleeding from one of Jadalyn's ears that night but she recovered and has seemed so very happy since. Smiling and LAUGHING. Okay, her Daddy said she laughed before but I must have mind melt because for me it was a first and it was amazing and wonderful. She just gets this really cute and huge smile and then laughs. Too cute! Usually this happens in her most active time, 10pm!!!! She had a follow up with the ENT a month after the surgery and he was happy with the results, he did say that there was still some redness remaining in her one ear (the same one that bled) so he gave us antibiotic drops. Both of her inner ears had been infected, no wonder she hated having her head moved so much. I wish someone had figured this out sooner, but there were other more pressing issues and I guess no one ever thought about her ears. That is until I tried to reschedule her hearing test. They said she needed to be seen by a ENT Doctor prior to being retested. So that is how it happened. So she had her hearing test re-done a few weeks ago. They sedated her and she did not like the medication at all. She was out of it but hitting her arms about and acting very agitated so the Audiologist and Nurse had me come back in and hold her. They had put the probes in her ears and put the sticky sensor tapes on her head (for the ABR - Auditory Brain Response hearing test) Both tests failed for the time they tried to do it before she got agitated. They did it at the highest decibels they have available. They said her shunt could have affected the ABR test result and the bad reaction to the sedative could have affected the other test. But as this was a re-test and had the same results as the original test (in August) they suggested getting hearing aides for Jadalyn. Another drama... They cost $2,950 and our insurance covers $750. Who knew they could be so expensive. I called the place where they would fit and make them and they told me they need payment up front. Yikes. So I'm investigating all the avenues. We have Blue Cross PPO - they pay $750, we have Tricare - they pay nothing, unless you the Subscriber is on Active Duty, we have Medical and therefore could qualify for something called CCS. So they sent me paperwork to fill out and return to them. They definitely make you work for the money! So we will see. The Audiologist told me that we should try them on Jadalyn for 2 - 3 months. See if they make a difference during her therapy, waking hours. If so, great. If not, then what??? They do not want to say anything either way about her hearing. So I choose to think she can hear to some extent, to what extent, I do not know... She is still wearing glasses. We went to the Opthalmologist and he told me that her optic nerves are very small and so he did not see the point in Jadalyn wearing glasses. Again, I told him that I think they help her to see. George (her Daddy) told me that he has small optic nerves and yet he sees perfectly. So maybe structure doesn't always follow to how things in our bodies will perform. I'm learning more and more everyday! Her Optometrist is much more optimistic as he has seen what people have said to be impossible. He actually goes to Jadalyn's Nurse Lidia's church. Small world. On one of her recent CHLA hospitalizations, they did a C-T Scan to check her shunt and said that her ventricles were shrinking. Those are the places in the brain filled with fluid, and in Jadalyn's case were larger than the brain portion and were in the way of her brain growing. Since the ventricles are shrinking, her brain must be growing. The reason I say this is because Jadalyn has become so much more active, alert, and reaching out to touch things (purposefully). She reaches out and touches her Daddy's hairy arm (a favorite of hers!) she reaches up to touch toys, she is bringing both hands in towards midline (the center of her body) to touch a toy. It's amazing and wonderful and we couldn't be happier for her. She continues to amaze everyone! Our little miracle baby :)

Jadalyn has been to the ER about once every 3 weeks due to her continuing reflux issues. So we are usually there anywhere from 12-18 hours and then she seems to be okay and they send us home. As long as she does not need continuous care from them they have been sending us home because CHLA is very full these days. She gets the usual, X-Rays, I.V. etc. they get her hydrated and off we go. It is always traumatic for her and for us but we are always happy to go home at the end of that day. Basically what we have been told from various doctors (at the E.R., in the hospital and by her Gastroenterologist) is that Jadalyn has slow motility (emptying of her bowels) and severe reflux. So she must eliminate every morning and every evening (or thereabouts) or else things just back up and then get pushed up into her esophagus and then she tries to throw up and turns blue. So we are now giving her prune juice and a variety of medication. We also have to "help" her out in the process. But as long as she is going, the problems cease and she is one happy little baby. All doctors have basically said that they want to avoid the Nissen (surgery where they wrap part of the stomach around the esophagus). So we will do whatever we can to avoid it. So far, so good! The other issue is her new G-J Tube which instead of depositing the food into her stomach, goes beyond her stomach in to her Jejunum (part of the intestines). So that way there is less risk of the food coming into the stomach and her refluxing. At this point any food in her stomach makes her vomit. This tube has been very problematic. We are back at CHLA every few weeks because it has come out of the Jejunum and it has become blocked several times due to a variety of reasons. As it is so far deep in her intestines, we can not replace the tube ourselves and therefore have to contact her Gastroenterologist who contacts the Radiology Department at CHLA and we bring her there where they check to see if the tube is out of place or blocked. The good thing about this whole procedure is that it is outpatient and once we receive the go ahead, we take her to CHLA, they do what they have to do, and we leave. I can't tell you what a relief that is! I just wish it worked better. We may be losing our beloved Nurse Lidia at the end of May due to the Medi-Cal Insurance we are now on. We would be very sad to lose her as we love her and she is so good at taking care of Jadalyn. We are trying to work on a solution to keep her but we are not sure what will happen. Pray hard that it will all work out!

Finally (phew!) in addition to Jadalyn's Physical Therapy, Occupational Therapy, Vision Therapy and Reiki/Massage Therapy, she will be getting a Speech Therapist (once the Audiologist sends her referral to Tri Counties Regional Center and it is approved). She is one therapy laden girl. 

Love and Hugs,

Liz, George and Baby Jadalyn Sidener

Dear Message from Nana and Papa - February 21, 2005

Dearest Jadalyn,

We do not hear the words you speak,

instead we hear the Love.

All our love,

Nana and Grandpa

 

***This is so, so true to Jadalyn and touched my heart deeply****

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.