Scratch that.

Lets get an update in here before more happens/ changes!



Yesterday Matt and I went to visit Jaycie and they changed her to "AD LIB" feeds. This means she got to pick when she was hungry rather than being on a scheduled time. The critera? She had to eat every 3-4 hours. Finish 200cc's a shift AND gain weight. Well last night at 9pm (12 hours after starting the order) She lost almost an ounce. Today at 9am (24 hours after the order and 12 hours after the last weight check) She lost another ounce. They canceled the order. She is on scheduled feeds again. 60cc's every 3 hours.

The Dr informed me that when Jaycie goes home she will be on a monitor. (This will let us know her heart rate, Oxygen Saturation, and Resperations). I have mixed feelings about this. I like it because... thats all I know Jaycie with is a monitor and I constantly watch it to see her fluxuations. She does still desat and have bradycardia with her feeds. During the night and when she is in deep sleep she does have lower sats. But what I am NOT looking forward to is "lugging" around a monitor where ever my baby goes. Hearing the LOUD no volume control monitor for false beeps. Downloading it to the company monitoring it.
The Dr informed me of the monitor at about 11 this am. By 4pm the company called me and let me know they are delivering it to the NICU tomorrow. They also want me to be there to get the training lesson on it. They work fast!

Yesterday Matt and I got to give her a bath. (this was the first bath Matt was present for) he videoed it while I bathed her. We will post the video soon!

6 weeks!

6lbs 10oz.

Stay Tuned for a video tonight!

37 Weeks

FULL TERM! She is full term now. (Anywhere from 37-40).
She weighs 6lbs 8oz.
Her food USE to be EBM (expressed breast milk) which is 20cals/ml and they added a human milk fortifier of 24 cals/ml. They switched it to EBM + Neosure formula (22cals/ml). She is gaining weight perfectly and she should stay on the added 22 cals until homecoming. (Which we still have no word on yet).

I hear an ECHO... In the Canyon...

Last night Jaycie nursed 1 feed, Bottled two feeds and use the NG tube for the other. We are quite proud of her! She was with a "HARD" nurse that will only feed her when SHE thinks is right so we are glad she was able to feed! :)

At 3am the nurse was with another baby and heard Jaycie making noises over there. She finished up with the other baby and didnt feel the need to call for help because Jaycie was being quiet. Well about 10 min later the nurse went over to Jaycie. She had her hand straight up in the air in a fist waving her arm around. In her hand you ask? Her NG tube she pulled out. The nurse said she looked quite proud to have it too! Her and the other nurse in the POD laughed about it! She got to keep her tube out until 9 this morning when we needed to use it. She was wide awake but had a episode while nursing and then another with the bottle, So TUBE fed she was!

Jaycie gets an ECHO today for her murmur and tachycardia. Im glad shes finally getting it since they've been talking about it .... FOR WEEKS and how they MIGHT do it. I hope it all comes out good!

We learned that Jaycie is in a "CURSED" bed spot. I guess the last few babies that had that spot in the unit had "FEEDING ISSUES" also. We joked about moving her but... the unit is FULL FULL FULL! I think they have babies stuffed everywhere! :) (Jaycies pod holds 3 beds and their are currently 6 babies in it, a set of twins, a set of triplets, and miss lonely Jaycie)

Jaycie is currently 6lbs 6oz, You can call her chubby... Im NOT denying it!

I hope everyone had a MERRY CHRISTMAS!

Kristy

ETA (Edited to Add): Jaycies ECHO came back normal! No Cardiac issues!

Merry Christmas

*Dont hate on the HUGE bow*... DADDY!

Jaycie is doin well. She is 6lbs 3oz. She isnt feeding well yet but... It'll come... with time! We are very sad she isnt home with us for Christmas, BUT we are very THANKFUL that she is doing as well as she is! We are truely blessed to have 4 great kids!

5 Weeks Old!

*5lbs 15oz. Shes BOUND to hit the 6lbs mark tonight!
*She is still having "Punky" episodes while eating. They want to do a swallow study towards the end of this week.
* She had her Crit and Retic count done (blood test for anemia) She still has some low levels so they increased her iron. They will recheck it in about a week to make sure its on the rise! if not they may do a blood transfusion.
* She is eating 57cc's ALMOST 2oz (which is 60cc's).

Please keep praying she comes home soon.

36 Weeks!!

5lbs 14oz

She had her blood tested to see how her anemia is. Its a little low she they are raising the iron dose.
She is now at 55cc's for her feeds. The past 2 nights she has eaten all her food from a bottle. The day is a different story tho, Sometimes none, Sometimes half, Sometimes all.
Her Desating is coming far and in between now.
I dont think I'll be getting her home for X-mas... BUT I could always hope for my Christmas Miracle. Im hoping by the new year she'll be at home where she belongs!

Santa Pictures!

As Promised.

Happy 1 Month Old!

Bebe girl!
5lbs 7oz
Eating 49cc's every 3 hours.

Interesting facts

- Ive driven at least 3300 miles going back and forth to the hospital alone in the past month

- Ive pumped at least 240 times in the past month

- It takes me at least 5 hours in my day to only be able to see Jaycie for 1 1/2 hours. (2 1/2 - 3 hours drive time depending on the time, 1 hour getting ready, 1 1/2 hours with her.

- Ive gotten to hold her less than 50 hours since shes been born. (Since I usually only get to hold her about 45 min a day, unless I stay for two feedings which isnt often and then I get to hold her about 1 1/2 hours.

- I have not missed a day seeing her.

- I have at least one picture documenting everyday of her life accept her first day (which was only 29 min of that day since she was born at 11:31pm)

- She has recieved 4 baths since being born

- She has 7 people on her medical team on a day to day basis.(Neonatalogist, Nurse Practicioner, Bedside Nurse, Nurse assistant, Social worker, Respitory Therapist, Physical Therapist) This not include the doctors that only come once in awhile.

-

Lifes a Dance...

Alexis, Hunter and Tate taught me a dance. Jaycie is perfecting it. Its a dance of patience. The steps are easy, Two steps forward, One step back. Just when you think the music is coming to an end... it surprises you!

- Patience when driving in morning rush hour on the 101
- Patience when Matt gets off late and I cant get to Jaycie right when I want to.
- Patience on potty training
- Patience on night time potty accidents.
- Patience and dont speed because the new photo radars on the 101... WILL get you!
- Patience with the nurses
- Patience on when your milk comes in
- Patience on your kids speech
- Patience on getting all her feeds
- Patience on getting a back yard done.
- Patience with getting your house in perfect order.
- Patience..... on when she gets to come home.

Phobia??? Uh Ohhh...

Jaycie was fed by two different people to evaluate her today. The Developmental Pediatrician and the therapist. Their evaluation? Jaycie drinks her bottle and then it gets down the wrong pipe and ALMOST goes into the lungs. There is a protective mechanisim and a valve closes so nothing gets into the lungs and she doesnt aspirate. Nothing In...Nothing out. She stops breathing and her heart slows down. She then either coughs or tilts her head back to MOVE the fluid. She moves the fluid and breaths again. In these times she is having high anxiety/ fear.

The day she ate her whole bottle she desated/heart dropped 10-15 times with each bottle. Then that night she refused to eat. They feel if we keep letting her do that and get high anxiety each time she will eventually be afraid to eat. She is associating the bottle with not being able to breath.

So the game plan... At each feed she gets a bottle ... the same bottle/nipple/hold (side lying). Once she has a "PUNKY" episode (her nurse calls them that) She has to stop... Even if she acts like she still wants to suck. They will tube feed the rest. When I am there I will nurse her (since she does the episodes less frequently while nursing) once she has an episode I pump to get the "FAST FLOWING" milk out and nurse her with her tube feed, so she can associate good with the breast and not develop a fear of it. So while this is going to take a while to get her to fully eat without a tube... the doctor said its better than developing a phobia of eating and needing a port placed in her tummy for feeds.

Until I get her Santa Picture up...

Here shes waiting for Santa!!

4 weeks old

Santa came to visit the NICU today. He was so...... REAL! I got two pictures that I need to scan in so I can post them! (Ill give them to Matt to do at work).

She is 5lbs 6oz. She is doing well without her caffiene.
Today she is being a rebel... without a cause? Well there is probably a cause but its unknown to me! She wont nipple any feedings. She closes her lips TIGHTLY and just doesnt want it! Oh well... We will give her a day off. It is frustrating tho, since this is the only thing left that needs to be achieved to go home.

Pictures with Santa SOON!

Jaycie makes a statement!

This whole time Jaycie has had her feeding tube and has never pulled it OUT. She does hold it and pull on it but it never came out.

Today Jaycie pulled it TWICE! I think shes trying to say something :)

35 weeks

Jaycie is 35 weeks gestation today. She weighs 5lbs 4oz.

She is doing pretty well. They are stopping her caffiene for her heart today. They see how she does with out it cold turkey. Im hoping she is ready wont need it ever again (Of course until she decideds to work nights somewhere and needs it to stay awake)





The episode from the other night where she turned blue and needed oxygen they believe was from reflux. They also think thats why she still has "little heart and breathing issues". Hopefully thats true. Hunter had reflux has a baby also and required zantac.





When Im there visiting she is so awake and alert these days. I love it! This week lots of stuff. She will be 4 weeks old tomorrow. Santa also comes to the NICU tomorrow. On the 17th (Wed) She will be ONE month old already.





Thanks for checking in on us.

Miss trouble!

Jaycie did so well today and I couldnt help but gloat. During the day shift she didnt use her tube feeds ONCE. NOT ONCE! She did so well. She had no episodes with her heart. She did great on her oxygen levels all day! She did great!!

Tonight........ I called to see how her 9pm feed went. Aparently little miss trouble... had a pretty long brady episode and her oxygen wouldnt come up. She turned blue so they had to give her some oxygen to get her back up. They thought it was her feeding tube so they removed it because she did so well today eating and didnt need it. At her feeding she did 5cc's and had another episoded which she turned blue so they gave her oxygen again and put the tube back in and gave her, her feeding through the NG tube. ( sometimes after feeding all day the "bottom out" and get tired.) They are going to let her rest for a feeding and try again at the next. Poor baby girl!

My loves!

My first picture with all my kids together

This was the first time the boys saw her. They had to "MEET" her through the window due to runny noses, and coughs. They were all thrilled!

Jaycie is 5lbs 1oz. SHE BROKE the 5lbs mark! I cant believe she use to be 3 1/2 lbs.

Cuddling with daddy!

Down hill from here...

Jaycie "GRADUATED" today. She is in the feeder/growers. She left her High intensive care pod and went to the feeder grower in the NICU. She is 4lbs 14oz. She is with nurses that specialize in getting preemies to "FEED" yay!

She had her developmental assesment today. They see if she is "acting" like a 34 weeker. They observed her for 90 min. And saw how she responded to light, sound, touch, nursing, my voice, strangers voices ect. ect. We get typed out results tomorrow.

We had the lactation consult today to check out her latch and some tips on getting her to stay latched on when she stops breathing (our concern was when she desated she unlatched and it is tough to get her back on)

Matt has his CPR course tomorrow (we both have to be certified to take her home, Im already certified)

Robertsons

First Boyfriend! LOCK HER UP DADDY!

Inside of a pod (where Jaycies' bed is) there are 4 beds to one pod. One of her roomates since she got admitted is a little boy. His mom is a ET fanatic and they named him Elliott. Jaycie gave Elliott some Reeces Peices the other day. Last night I went to visit Jaycie and she had a baby pink stocking hanging on her bed. With a red preemie onsie that says "My 1st Christmas". Elliotts mom was hoping she would wear it when Santa comes to visit the NICU next Monday. I'll be sure she does. It was sweet of them!

Jaycie is 4lbs 13oz. BIGGIN! She had 2 Apnea episodes last night.

I leave you with a pretty picture of her.

Happy 3 weeks!!

Jaycie is 3 weeks old today. 4lbs 12oz. Her face is really filling out. She looks like a full term baby... just... SMALL!

She is doing well! Im really glad how smooth the past 3 weeks have gone. Between my parents and Matts parents watching the kids so I can go visit her when Matts at work. Matt being flexible on when I go and when... he cant go because he has to be with the big kids. My SIL Dawn checking on her the nights shes at work and giving me updates. Everyone that has left comments and emailed me letting me know they are praying and thinking of my daughter and our family. Thank you to EVERYONE! I appreciate all the support from EVERYONE! I hope the next coming weeks that shes in the NICU are just as smooth.

Thankful for everyone
Kristy

34 weeks gestation

Miss Jaycie is 34 weeks gestation today. She is 4lbs 10oz. I KNOW I KNOW... CHUNKER!

She is doing alright on the oral feeds and still needs alot of work. Her heart episodes are getting less and less BUT still present. I cant wait until the day they tell me she can go home!

Normal Ranges!

Jaycie is now 4 1/2 lbs. 4lbs 8oz. OH MY! Remember when she was just 3 1/2 lbs?? Shes doing so good! Last night she had two of her feedings from bottles. She had only little dips in her heart and none that lasted long enough that had to be recorded! YAY!

Her test results came back for her Thyroid and everything came back all normal! YAY!

We are all eagerly waiting her arrival home. Which we are hoping is around Christmas time!

Blood Tests.

One of Jaycies PKU's (newborn screen) came back a little off on one of the tests. She is going to have a full Thyroid workup in the AM to see how it is. Lets pray nothing is wrong with her thyroid!

Thanks!

Feedings... Feedings...

Jaycie is getting most of her feedings from the NG tube in her nose still. Yesterday though...
9am feeding- 1/2 bottle , 1/2 NG
12pm Feeding- 1/2 nursed, 1/2 NG
3pm feeding- All NG
6pm feeding- All NG
9pm feeding- ALL bottle

12am feeding- 1/2 bottle, 1/2 NG
3am- All NG
6am- ALL bottle

Isnt she doing good? When she normally gets all her feedings from her NG and maybe... ONE a day from a bottle/nurse in a 24 hours period since she was given the OH KAY to do so. With all the sucking and burning calories of eating her food orally they thought she would loose weight or not have as fast of a weight gain. Well as of today she is 4lbs7oz. SHE IS ALMOST 4 1/2 lbs. OH MY GOODNESS! She will be a sack of potatoes before you know it (5lbs).

She is still having her desats in breathing, and her heart rate drops. But like they said before... they usually just mature and stop having those at about 34-36 weeks gestation. Lets hope thats the case for Jaycie.

**Jaycie and her baggy hat**

A Pretty Picture of a Pretty Princess!

* Her other white hat got lost so this ones a little bigger on her**

15 days old!

Jaycie gained 50grams in a day... so she is now 4lbs 4oz. Before you know it she'll be outgrowing her preemie diapers!

She hasnt been drinking from a bottle at all today... the nurses say shes too tired. One of the things that is frustrating is the different stories/ideas/agendas/ect. from the nurses.

I went to see her today and met her physical therapist for the first time. They were working on her range of motion and her neck and make sure she has infant reflexs (like tucking her legs underneath her when shes on her tummy). This is a daily session that last for 20 min.

She was placed on iron today and will need that when she goes home for the first year of her life. Which is a common thing in breastfed babes.

Her eye duct is doing better. She had an underdeveloped or clogged tear duct. My oldest daughter had the same thing for the first few month of her life. But Jaycies is doing much better now!

She had some Apnea issues again last night. They said she was tuckered out from bottlefeeding ( that is one of the reasons they were being easy on her today and just did the tube feedings)

** I have to remember she is only 33 weeks ges. and cant be discouraged at what she ISNT doing. She is still supposed to be in my tummy for 7 more weeks. I forget this sometimes because she is here and has been here for 2 weeks. She is going to do things at a different pace then im used to. And thats oh kay. I just have to remind myself sometimes! **

Happy 2 weeks Jaycie!

Jaycie is two weeks old today. She is also 33 weeks gestation. She weights 4lbs 2oz.

Guess what she got to do today? EAT ORALLY!!! She nursed (real nurse) for a bit and then took some out of a bottle, then fisnished with her NG. (10min nurse, 5cc bottle, 35cc NG) They are going to do bottle feeds as long as she is awake during feeding times. When she is too sleepy to eat orally they will do her feeds through her NG tube so she doesnt choke, aspirate, desat, ect. Im excited for this because its a step in the RIGHT directions. I just pray she does so well at her feeds and wakes up and wants to eat them all orally! Im very excited for her!

EDIT TO ADD @ 3:30pm- The nurse called me to inform me at her 3Oclock feeding she finished ALL 40cc's threw her bottle in 11 min! No desating or anything. That includes her 2 burps.. GO BABY! I am just so thrilled!!

GO BEBE GO!!

Amma came to visit her today. She got to hold her for the first time. I tried not to hog her to much but... you know me... Im all over that baby!