Christmas

ok up dates pic. time

after the 4th surgery

She had to have Tracheotomy. and she have being pretty good on it she getting big 5lbs 5.9 oz

Today update

Besides all the other stuff that is going on, she had her 18th blood transfusion. I checked on her around 10pm like always do wean i call the NICU she had some liquid leaking with blood in her umbilical cord where the surgery site was. everything is all good.

I have a big girl today- she weighed 5 lbs today!

Day after surgery

Well, not so good, she has a right lung that is calapsed. She is having a test run, she is heavily sedated and on antibiotics. the next day she had a problem with her intestines shutting down from the surgery, so her the intestines were slowing down from the surgery. the nurse had to insert a tube to suction any liquid that was in there. And the test came back negative for infection.

ok up date from Surgery day

OK surgery day started rushing in to the hospital because she got move to first after the other 2 was cancel.. 1 from a no show to the 2 thy eat. So Faith first thy call me at home telling me that i need it rush in. Surgery lasted a 1hr 40 mt. he say that everything went well. she was 4 lbs. 11oz

Big Baby!

4lbs. 5.5 oz


She is doing good. some problem with digesting the milk. She have paralyzed vocal chords, that why she can't breath on her own.
So surgery is coming up to put tracheotomy , and if she need it a g-tube all in all she is good baby.

Thanksgiving

4lbs 3.5 oz

Faith update picture for the month

we got a new bed

Yesterday she got a crib. So we almost there to be home.
If can only get the tub off, it will be all better.

The day after surgery

She doing good.
Faith get to eat again. She trying to open her eyes but no luck on that.
Faith just moving around being a girl, and she wight 3lbs 11oz today.

The day of the surgery

Before surgery



After surgery

the befor surgery

Well I cry wean thy say she need surgery asap.
It was going to be 11/5 at 7:30 am.
The surgery is to repair her "ROP" wish will try to safe her eyesight.
I call my visiting teacher to come give her a blessing.

Do I get any break today!

Why my baby girl think mommy can have another day of stress... yes people she toke her tube off again.

Sunday

Well she was very good today fussy and moving allot.
I kangaroo today from 2pm until hell break loose at 7:15pm.
she extubate her self in top of me she stop breathing again she recover fast and thy need to put the neobard back, well she got a new bed and thy pote the wormer on high so it will warmer faster but she got there it was fine I went to do something came back 30mnt later, her bed was beeping that it was to hot!
Her heart was 225 and she had a fever 101.0 I tell the nurse and she tells me to open the door of the bed to let the hot air out.

Saturday.... is to hard for me

This what happing on Saturday.
Thy try to change her breathing tube, for the 3 time.
This time it was so hard to be in the room when she stops breathing, turning purple and not moving at all I try to stay and help the RT guy but this time I couldn't handle it I cry and couldn't stop crying all day. I just couldn't take loosing my baby girl that way she just couldn't breathe the same way. Thy got her back and she was tier she sleep all threw the night until she extubate her self around 3am Sunday morning 2 times.
That was my Saturday.

ok.. Halloween day

Well I was much exited that will be her 1st holiday well brought candy.
Ok not really Liz came and gives me a bag to give to the nurses and Dr.
One of the nurse tell the other nurse that for them to have candy thy need it to say tricks, treats to Faith first and pick candy, so thy did that.

this wk pic.

This how I fine her in the morning

3lbs 2 1/2 oz

well she getting big. Today thy give her more blood to help her to get ready to take her tube out.

she mad at mommy!

Well I got there very late around 3pm. Normality I carry her around 12pm or 1pm.
OK so I didn't get to do that so I mess up the routine with her (bad mommy).
Well she was mad. Her sat was bad she was not happy at all all day. So I tell the day nurse to tell the night nurse that I will kangaroo at night time.
well I didn't get to do that because the nurse was busy until 9:20pm.
As soon I got to hold her she got quiet. the stat was good, the nurse was impress. She was bad all day. I try to tell them she mad at me. Thy wanted to give her pills so she can relax her, I say no she just mad. Thy explain that it will be good for her if she relax so she can go to sleep and grow etc. RT guy say she having like cardiac arrest. Moore like hart attack episode, little one but thy will monitor for her high hart rate she getting. It us to be from lows 130 to high 175 on the hart after last time, know is from the lows 178 to 220. Wish I don't know what is going on with her hart.
Tomorrow will see haw she will handle again the c-pad wish is schedule for Tuesday or Wednesday.
Hopefully she will take it this time. I just have allot of friend that meet at the NICU that gone with there baby this wk.
I just wish that going to be us one of this day soon!!!! but I just wish them well. It least I just got 1 Moore left that area left wish we lough allot cry with our problems, so thanks "T" for being a friend to this journey we have with our baby.
I just need faith to do well this wk.

What a Diva!

Well today got report that she did good at physical therapy.
Well is time for me to kangaroo again. Not long after that happening she start it acting up. Like she wanted to change position. She pick up her head try to change to the other side, keep and main that her tube is tape to my shoulder and i call the nurse for help we change her head to the other side. Not 5mnt pass by she try to move down her leg was at the right side of my body wile her head was going left side of my shoulder. I ask her what are you doing?. Well she move all the way to my breast. I don't know what she was looking for but some how she in up in that area. I star it holding her like that.
All the nurse lough because she was acting like diva. Is her way or no way at all.
She just wanted to be laying next to my bosom.

Bath time

So after all the rough day we had she get to be clean.
She hate to be washed over her body, but wean you get to wash her hair she is fine and loving it.

when i see my daugter fading away from me

Yesterday, they got started to change her breathing tube for another one. She didn't do so good. She was very unstable with her breathing and she will be back but not for long. When they thought that everything going well, the nurse left the room and I got to be with her. Two minutes pass wend she stop breathing her heart drop to 13 and her oxygen was 20 and dropping as well. I see her gasp for air and shaking like she was looking for air and shaking so hard they all rush in to intubate her again and try to keep her life until thy can finish putting her tube back in. She went into cardiac arrest and she haven't come off that. Her heart rate some time will go 220 which is too high for her. Her oxygen is doing good so the Dr. want to try again next Friday. Hopefully she can do better. I do want her to get off the breathing tube so she can move forward and be home that being my day yesterday and today is just watching her fight for her life is any body watch a child gasp for air like there nothing left there it was very hard and sad I keep replaying that action she did in my head. hopefully can replace it with something else.

Well today was very good day she had her eye open all day she very good girl! thy will try the cpad again this wk hope it goes well.

more to love

Faith is getting big she wight is know 1262grams ( 2lbs 11.6 oz ) she had to had blood transfusion yesterday because she growing and doing all the test need to put more blood on her she was slowing like a Balloon, she look very bad after that blood. but she had my hart she was mammy girl today.
She doing good!. I wish soon that she can be 4lbs so we can go home, hopefully for Christmas.

big girl!

OK today was very nice and normal day for Faith. She weight know 1141 grams wish means 2lbs 8oz

Fat is the new word!

ok well Faith doing well after her injury is drying up she got special tape that will not hurt her and that the skin can breath.
She so beautiful. She also is getting big yesterday she was 2lbs 6.5oz so my baby is eating her milk almost 2oz.