I just wanted to give you a quick update on Natalia.  I wish I had more time but I need to start the day, so I will make this short.

We are happy that Natalia has reached her first month of life.  We love her and the kids can't give her enough kisses.  Just a moment
ago Jacob woke early and heard Natalia crying.  Jacob came up to her and sang "I love you forever, I'll like you for always, as long as
I'm living my baby you'll be."  Jacob is great with her,  He just comes up kisses her, and try's to sooth her by rubbing her head gently.  He usually is able to calm her. Jacqueline and Nicolas both have been a great help also.

Natalia is STILL having a difficult time feeding. She cries most of the feeding due to gas and reflux pains.  It is so sad to see her want to eat yet pull back because of the pain.  We are tryingeverything medically to make her comfortable so I am sure we will tackle this problem.  Although this may just be one of the problems this little angel faces.  Please continue to keep her in your prayers so her pain is minimal.

We have many Doctor visits this week as we are following up with the Doctors who saw Natalia in the hospital.  Today we see the eye
Doctor.  I will continue to keep you updated. I thank you again for
keeping Natalia in your prayers.

God Bless You all and have a wonderful day. Love, ThereseAnn
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9/28/00

Hello to you all.
Well here we are again,  I knew a hospital visit would be in the future at some point and here we are.

We went to the Pediatrician today to talk about an upcoming eye surgery for Natalia on Monday.  Dr. Nelson suggested we put Natalia
in the hospital to help give her strength for the upcoming eye surgery.  We have still been having trouble getting our little angel
to drink the proper amount of formula.

She will be in the hospital through the weekend and hopefully she will have eye surgery  on one eye to remove the cataract on Monday.
Please pray that the abnormality of her eye does not interfere with
her retina. Although I am still praying to Blessed Fr. Serra for a
miracle.

They will also be trying to figure out why Natalia is continuing to have so much pain when she drinks,  She has an upper GI planned for
tomorrow.

When I left her earlier today she had been crying uncontrollably for
a few hours.  They had put a tube through her nose to her stomach to feed her.  They had fed her the expected 60 ml of fluid, although
remember she has only been taking 30 to 40 ml on a regular basis.  Of course the added fluid only made her little stomach go into a reflux routine. She was still in pain as I left to get the other children
after school and when I returned the nurses said she had been crying
the entire time I was gone.  It must have been 2-3 hours.  Of course
that just breaks this moms heart.  I couldn't bear to wake her when I
returned so I can only hope she is calmer through the night. And with
that, I will make this short as I am looking forward to a long sleep
myself.

Thank you again for your support through your prayers, calls and e-mails. They are such a great source of strength when I feel like this is just more than I can bear.  Thank you, thank you and thank you. I
love you all.  God Bless You
ThereseAnn


Hello again,
Just wanted to update our prayer request specifics.  There are so
many, but for now, Natalia's eye surgery seems to be off for Monday
as they are trying very hard to figure out what is causing her so
much pain while eating. She's had an upper GI and now they are doing another test to check her PH level as she eats over a 12/24 hour period.

She will probably have some sort or abdominal surgery early this week, I will give you more specifics when I know myself.  The little
angle has been x-rayed, poked, and has tubes down her nose.  She
isn't real comfortable, Although she loves being held.  I pray daily
that she will be as pain free as possible.  Thank you again for your
thoughts and prayers.  I know we will tackle this eating problem
soon.  As for now, she looks very good for what she is going through.
God Bless You ALL,LOVE, ThereseAnn


Hello,
I just wanted to send a quick hello, hope you are are all well and
happy.  I am in a great mood as they will be operating on Natalia
tomorrow to fix the mal-rotation in her intestine. They will put in a
G-tube to help with feedings. Of course, I am still going to feed her
with the bottle, the G-tube is going to be in just in case we need
it.  It can always be taken out if she is able to handle the bottle feeding on her own. She has been so uncomfortable that I am hoping
this truly fixes her pain during feedings.  She is such a little fighter.  She will be out of NICU for a month as of Thursday.  So as you can see, this little angel has been hanging in there till we figured out the problem for a whole month.  Of course, I shed many tears over her crying fits and I can only pray this procedure makes eating a pleasurable experience.

I will let you all know how everything goes tomorrow evening.  Please
keep her in your prayers after 10am or so.  The surgery is scheduled
around 12noon but it may going earlier I have been told.

God Bless You all, thank you for praying for our little angel.:)
Love, ThereseAnn


Hello to you all,
I am so happy.  The surgery went wonderful.  She went in at 1pm and by 2:30 the surgeon was telling me that everything went smoothly.  I was so relieved.

I wanted to finally give you all the specifics so I had a very kind nurse named Emily today write out the long names of all the procedures our little angel has gone through these past seven days.

She has had a esophagogastroduodenoscopy (EGD or upper endoscopy-scope to assess stomach)----upper gastrointestinal series (upper GI)--x-rays of the chest barium to check reflux, PH study (small tube to check acid levels in the stomach-from nose to stomach)

The surgery was an exploratory laparotomy, correction of malrotation, appendectomy, placement of feeding tube, and frenulectomy (her tongue was tied)

Whew!!Now you know why I talk in simple terms. :)

The last two days I was unable to hold Natalia due to her EGD on
Monday  and yesterday when I arrived my Aunt Bev has just settled her
down, she had been crying all morning.  I didn't dare wake her.  In
fact, most of the nurses pass the word on that if she's sleeping,
leave her alone.  She has been so uncomfortable and fussy that it's a
pleasure to see her calm.  I come to the hospital as often as I can
but I can't always be there.  My parents, my Aunt and a friend have
helped me with the cuddling time at the hospital. She likes being
held, although she was in so much pain, holding her did not always
calm her.  I am soooooo--looking forward to the next week to see if
this surgery has really helped with her pain.

I want to tell you that this morning when I arrived she had not been
fed since 4am.  She was so alert and bright eyed.  It was nice to
visit with her and give her a little pep talk.  She was happy to have
me there I'm sure, and when the surgery was over I came to see her.
She opened her eyes as if to say, Hey mom, I did it!  She looked so
relaxed and peaceful in the recovery room. She truly looked like an
angel.  Of course, she was on some terrific drugs I'm sure, but
anyhow, she looked perfect to me!!!!

Thank you all for your prayers.  I am absolutely sure God heard all
of them and sent  his angels and held his healing hand over the
entire procedure.  I truly felt his presence and I am sure the surgery team did also.  Our little Trisomy 13 baby is surprising a lot of physicians.  God is powerful, and he is doing something special with our little one.  It is amazing how many lives she has touched in so little time here already.  I thank you again for your prayers, they are heard and my daughter is doing well today because of them.  I will continue to pray for you and ask him to send many blessings your way too.  Thank you for allowing me to share our journey with our Natalia with you.:)
All my love, ThereseAnn


Hello to you all,

I was checking my calendar today and realized that Natalia has been
in the hospital half of her life.  Twenty-three days home and twenty-three days at Long Beach Memorial.  They treat her well, but I
am so anxious to bring her home again.  She had her surgery last
Wednesday, and we began trying to feed her with the bottle today as
well as the G-tube.  I was disappointed that she was not interested
in the bottle.  After the G-tube feedings she refluxed some up a few
times.  I was so hoping the surgery would take care of this entire
problem.  Well, I believe she will be having to cope with this problem and many others for a long time. I am sure the Doctors will find a way to make her as comfortable as possible, I hope it will be pain free.  As well as working on getting her feeding down, we are still looking forward to her eye surgery as soon as we can get an OR
room scheduled.  Probably late this week or next.

I have sat here and tried to write more about what we are going through but I keep deleting the paragraphs.  I can't seem to put into
words the disappointment I had today.  Sometimes I think I am strong but I have no way of helping this little girl.  I can only watch her and hold her.  I seem to keep setting myself up for little disappointments as I wish, hope and dream for her to get better each
day.  I am trying to take a day at a time, but it is hard not to dream for a day when Natalia might be home.

My sister, Mary from Merced came down this weekend to meet Natalia and help. At one point in the conversation I was complaining to her about something that needed to be done around the house.  I made a comment to Stephen, "Hey, where's that handy-man I married, I haven't seen him around here in awhile?"  He quickly came back with, "That handy-man must have ran off with the cook, I haven't seen her either!"  Funny as it sounds, life here is not normal. And cooking, I need to diet anyhow! All this driving and sitting is just making me grow. UG!  We are adjusting, but our lives are forever changed.

I received a beautiful card today that read:

GOD IS IN QUIET PLACES,
WAITING IN BETWEEN THE SPACES...

WHEN WE FINALLY TAKE THE TIME,
HE WHISPERS,

"I LOVE YOU, CHILD OF MINE."
I hope you all feel Gods love in your lives daily.

Again, I thank you for your prayers for our little one.
All our love, ThereseAnn

I'll write more soon, tired for now.:)

Hello to you all,
I feel like we are on a roller coaster.  Yesterday I was disappointed
because Natalia seemed to be having trouble nippling from the bottle
as well as in pain with G-tube feedings.  The occupational therapist
was not able to come in until today.  She made all the difference.
Natalia did very well nippling the bottle from her today and I will try again tomorrow.  We just need to train her to use her tongue again. Unfortunately she is still dealing with the pain when they feed her, even if it's slow over on hour in the G-tube. Thankfully, Today is the first day I didn't feel the need to request morphine for her. Although I called this afternoon and the nurse said she just gave her some.  We'll see what tomorrow brings.

It occurred to me that the nurses are not all trained with the Haberman bottle. It is a special bottle to feed cleft pallet babies.
It's not difficult, just a bit different. I left today feeling more positive.  She seem to tolerate the feeding with the bottle with only one reflux episode.  She looked so content when I left.  Hopefully she didn't have a problem later, I'll find out tomorrow.

I also have noticed that there are seasoned nurses and new nurses.
Well, I became assertive today and requested the seasoned nurses.  I also asked them to not only have her in her vibrating infant seat but
to also let her lie a bit on the bed.  Natalia has been content other than pain episodes in her seat.  But I would like to see her use her
muscles as much as she can and I am hoping she'll have more movement while lying on the bed from time to time.

Long Beach Memorial is a training hospital so we have had nursing students and residents working with her as well as our own Pediatrician and other specialist Doctors.  I have been pleased with
all the care she has been getting and the staff at the hospital are
very helpful with all my little requests.

A hospital Chaplain came in today and asked if I was getting any support, and if I was in any groups.  Although I haven't really had
any time to join a group yet, I feel I have many, many family and
friends who have expressed their support.  Everyday when I check my mail, email, or through phone calls  I feel support.  I feel strength
from your quick hello's or hugs as we pass during the day at school
or around town.  Thank you all........

A friend called and told me a pastor at a local church wanted to come and pray with Natalia at the hospital.  Well, there is no need to
ask!  I give everyone permission to pray over my little Angel.:)

I keep hoping one day God says, "Hey, there seems to be a lot of
prayers coming up for this little gal, maybe we need to give them a
Miracle." :) Well, you know, I'm here and I'll let you all know immediately!!!

God Bless You all....Love, ThereseAnn

P.S. Some of you have told me that you check your email daily to see how our little gal is doing.  I don't always have the energy to send a letter out, but it is a little like keeping a journal for therapy
sake. So I will try and send a bit more often.  If I bore you, just
delete me...I'll never know.')

Hello again,
This morning they told me they were going to perform Natalia's eye
surgery tomorrow.  Please pray that the abnormalities in her eye do
not interfere with her retina.  They are going to operate on one eye
and take the lens out with the cataract.  There is a possibility that
her abnormalities will cause the retina to be damaged also, but they
will not know until they remove the lens.  Of course, if the retina
is damaged she will be blind in that eye.  That is why they only work
on one eye at a time.  In a month she will get a contact and then
hopefully, see her Daddy, Mommy and siblings clearly for the first
time.  I pray this goes well.

Thank you for your prayers.  God Bless You, Love, ThereseAnn

Hello again,
I have good news.  Natalia's eye surgery went very well.  The
cataract and lens came out fine without any damage to the retina.  In
a month she should have a contact lens and some back up glasses.  I'm not really sure how I'm going to get a contact lens in every day or
how glasses will fit on her smooched nose, but we can get through all that minor stuff, I'm sure.

As of last night, with our roller coaster week, Stephen and I decided, if the Doctors are done with tests, it's time to bring our little angel home.  I have been at the hospital most of the day and evening, and plan on spending most of tomorrow there. I'm are going to get this feeding routine down. I am hoping we can get her home by Saturday.  I haven't yet cleared this with the GI or Pediatrician Doctors, but I really want to get her home by Saturday.  She'll do
better here.  I'll keep you updated.


More good news!!! Natalia had several feedings today with the bottle
and she only had one pain episode. At that feeding, the aid decided
to check her blood pressure. Ooops.

I am trying to spend more time with her to give her some continuity with the feedings.  It seems to be working  by the past few days.

Thank you so very much for your healing prayers.  I feel she is doing
better, and I know God heard all our prayers regarding her eyes.

God Bless You All, I pray for you and your family also....

Love, ThereseAnn