2012

Can't believe it's already 2012.....time sure flies doesn't it!
2011 was the most emotional, challenging, painful and difficult year of my life....but at the same time I was very very blessed......my testimony was definitely tried and it grew A LOT! 
This year I'm more aware of my blessings, and I've realized that nothing in life is guaranteed....so I try really hard to be grateful for every good thing that comes into it.  I've learned that for me, if I focus on my blessings and vocally speak and show my appreciation to everyone I'm grateful for...I am more aware of the positive in my life than the 'learning experiences' I have.  I have a lot to be grateful for!  My husband.  My kids.  My family.  Friends.  Even strangers who have blessed my life.  The gospel and the knowledge that my family is forever....that's what makes losing baby Cindy not as hard.  I'm grateful for miracles....this year I learned that they really do happen.  My baby Katea is a true miracle! One of my friends, who is also a NICU mom, shared this quote by Elder Dallin H. Oaks.......he said:

 "Although we are generally counseled not to speak of sacred things like the miracles we have witnessed, there are times when the Spirit prompts us to share these experiences, sometimes even in a setting where our account will be published."

I feel that way about my baby Katea's story.  With everything that happens to her, both good and bad, I'm prompted to write about it and keep a record of it.  Maybe it's for me, to help me cope....maybe for her when she gets older....maybe for you reading this....I don't know why, but thank you for letting me share my miracle story with you this year....I will continue to share her jorney!

I'm ending this year at home, with my little family.  Ova's making dinner, I'm making dessert....the kids are dancing their hearts out to Just Dance 3 on the Xbox 360 Kinect.  This is what life is all about.  Spending time with family.  To all of you who were are part of my life in 2011, I thank you!  May you all have a wonderful 2012!

Christmas 2011

This year Christmas was very meaningful, and very very busy!

The Christmas spirit was so strong and overwhelming throughout this whole month of December.  It started out with all the treats and gifts we received in the NICU, almost every single day we would show up and there would be another Christmas present or bag of candy in baby Katea's room.  Most of them were from parent's who had a NICU baby in the years past and had to spend Christmas in the NICU.  They were giving back, and sharing the Christmas spirit by sharing their stories, their experiences, their support and love, and a gift with us parents that were going through it now.  Those little meaningful gifts made a big difference for me, and it's something that I will do from now on every year for Christmas....give back!  Also, about a week before Christmas there was a mysterious package left on our porch.  It was a huge gift bag with a present for every member of our family.  We had no idea who it was from, because whoever left it just knocked and ran.  By the time we got to the door, they were gone and all we saw were the gifts.  There was a card inside the bag that read "Your family is such an inspiration and an example to so many.  You are always in our thoughts and prayers....XOXO....Merry Christmas, Your Secret Santas"  Those were the first presents under our tree.  We are so grateful that someone would do that for our little family....we only wish we knew who it was so we could thank them!

Christmas morning our kids came in our room to wake us up at 8am screaming "Santa came! Santa came!" We made sure everyone in our house was awake and then we all headed to the living room to see what Santa had brought. It's a tradition for us, before we let the kids open their gifts, to talk to them about the true meaning of Christmas. Ova asked them questions and explained to them that the most important part of Christmas wasn't about the gifts, it was about Christ. After the Christmas talk from dad, he offered a prayer....then the kids passed out the gifts.....

Daddy helped Tala open hers...

Mone opening his...

Makai's turn...

Tala was spoiled....who lied and told Santa she was a good girl??  hahaha j/k

She got a barbie from our Secret Santa, a blonde princess doll from G-ma Tea and a brunette doll from Santa Claus!

We let the kids play with their toys for a little bit, while we cleaned up all the wrapping paper and stuff.  Then we all got ready to go to church.  Our church was at 11am and it was a beautiful, spiritual program.  I especially LOVED the musical numbers....they always fill the room with such a strong spirit!

After church was over, I went to the hospital to see baby....and Ova went home with the kids to get them ready to go down to Lake Shore to my parent's house.  Ova really wanted to go to the hospital with me, but he's been sick with a cough and runny nose....so it's better if he just stay away from the hospital until he gets better....just so he doesn't get baby sick!

Ova and I got the best present ever....it wasn't something material....it was our precious little miracle baby Katea!  (The onesie she's wearing is from one of my mission buddy's Hermana Armga....she sent a little Christmas package for my family...she's so sweet!  The little tag on our gift says 'Mom and Dad's best present ever')

I got to the NICU at the perfect time....right at the same time Santa came.  I think it's so neat that Santa took time out of his busy schedule to make sure to visit the preemies...he went from room to room and took pictures with every single baby there!  And Santa is no exception....he had to scrub in and use hand-sanitizer just like everyone else!  :-)

I didn't have much time to spend there that morning, I just wanted to stop by and kiss my baby girl on her very first Christmas, and help her open her gifts.  She had quite a few gifts under her tree that morning when I got there.  She's very loved and spoiled and she got lots of fun and cute things for Christmas this year!  I laid everything out on the chair to take a picture for her to see when she gets older!

She got some really cute books, so I spent a little while reading them to her.  After about an hour, I had to go so I could meet Ova and the kids....so we could head down to Lake Shore!  I was so excited this year that all us siblings, spouses and kids planned to make time, at the same time to be there together.  We haven't done that for the past couple years....we all go down on Christmas day, or Eve.....but not necessarily at the same time.  This year we made a point of it, and it was so nice to have EVERYONE together all at once....and to let all the grandkids play together!  I loved it!  Gramma & Grampa had already opened their presents with Leka, Safi, Fanga and Misi Pou on Christmas Eve, so all these presents were for the grandkids!  Spoiled much?!!

Of course we all sat around the family room and before any presents were opened or even passed out, Grampa Makai gave a little Christmas advice.  Talked to the kids about what Christmas was about and told everyone he loved them.  He talked about how blessed we are, as a family to have our little miracle baby Katea.  I totally cried the whole time.  He challenged us to be better people, and to make time to go to the temple more often....by going more often, we will be happier people and we will be blessed.  After my Dad talked, he gave all the adults a chance to say something....we just went around the room saying Merry Christmas to everyone.  I cried like a baby.....just so extremely happy for everything I'd been blessed with, but so wishing my baby Katea could've spend her first Christmas with us!

After everyone was done talking.....Uncle Misi had all the kids sit on the floor in a circle and he passed out all the gifts to the kids.  Everyone was so excited to see what they got from their Aunty's and Uncle and from Gramma and Grampa. 

After opening the presents, we ate, visited and just enjoyed everyone's company!

This is Gramma & Grampa with the newest additions to the family....born in 2011 (only missing baby Katea)

And a picture of Gramma & Grampa with all the grandkids.....15 were there, 1 in the hospital and 1 in heaven!  :-)

I was so glad we all made time to be together at the same time.....it makes Christmas so much more special to spend it with family!

After we left my parent's house, we were hurrying home because we thought we were eating dinner with Ova's family.....but when we got here, nobody was here...Tea was sleeping in the living room and Ma was sleeping in her room.  Nobody had come for Christmas. :-(  Ova was sad, especially since Ma is here with us.  She's 89 years old this year....we should ALWAYS plan to be together on the holidays, especially for her.  It was so sad to see her laying in her room on Christmas night, no Tongan food, no family to visit.....that is something we need to focus on for next year!  Celebrate the holidays with her while she's still with us, because someday when she's not here anymore....we will regret not taking advantage of those opportunities!  That's why I feel so grateful and blessed that Ma lives with us.  I'm so lucky that my kids know their great-gramma on a more personal level....they are comfortable with her, she yells and disciplines them.....that's not something all her great-grandkids can say, and I know I am blessed to have her!

Since nobody was here, I decided to go back to the hopsital to spend a few more hours with my baby girl.  She had a good day on Christmas!  I just held her for a few hours and spent time with her.  She is what Christmas is about.....faith, hope, miracles, love.....I'm so grateful for her!

Merry Christmas Everyone.....and Happy Happy New Year!

2.5 Yay!

So far, so good with the NJ tube!  Thankfully after that crazy day with all the bradicardic episodes, and the stress.....now things are looking up again!  There's always good days to follow the bad, but unfortunately that doesn't really make the bad ones any easier to handle....

Yesterday was the first day after the Upper GI procedure and she was pretty much sleepy all day long.  She was probably just exhausted from all the stress from the day before.  She only had one bradicardic episode in the morning, and Charise said it was just caused by water from her nasal canula tube getting into her nose....after she suctioned her out, she was fine.  That was such good news!  I stayed with her for several hours yesterday....just staring at her, holding her and kissing her.  Pretty uneventful day for her, which was so nice after the craziness of the day before!  So glad she was having a better day....and that I was too!  :-)

Today has been a great day for her too!  She had absolutely no episodes at all and they were able to wein her oxygen already!  She's now down to 2.5 liters, and so far today she's doing really well on it!  Her breathing patterns are stable, no periodic breathing...and her Fi02 is back down where we like it....between 31-36%.  Apparantly that's what she needed, just a break from all the acid reflux.  She was wide awake and bright-eyed when I got here so I took her out of her crib and we played for a little while.  I was talking to her, and singing to her.....and then I started taking pictures of her and she got a little irritated with me.....hahaha, she doesn't like the camera in her face all the time......but I do :-).....we read books together and then she started getting sleepy, so I put her back in her bed to sleep.  Love my quality time with her, even more when she's awake!

It's 7pm right now and I'm blogging out in the hall while I wait for the NICU to re-open.  I'm going to spend a couple more hours with my little miracle before I head home to have a movie night with my older 3.  So glad she's having better days and that we've been able to make some progress with her oxygen needs!  If she's down to 2 liters (which I think she will be) by the end of the two weeks with her NJ tube, we'll get to start the next big step which is breastfeeding!  Big steps she's taking.  I'm so happy with how she always takes huge leaps forward after taking a tiny step backwards....that is amazing progress!

After the break, I went back into her room and she was STILL wide awake and bright-eyed.  The nurse told me she woke up again right after I left, and had been up ever since.  I was surprised that she was awake that long, I thought for sure she would be sleeping...especially since she was so wide awake while I was here before.  I took her out of her crib and we were playing again.  But this time, she was irritated.  She kept rooting and turning her head to both sides looking for something to eat.  The binki wasn't cutting it for her.  She wanted food.  I put her in her bouncer chair and turned it on vibrate...that only worked for like 5 minutes and then she was done....I stood up and tried to rock her...that didn't last long either.  I asked her nurse if I could do non-nutritive.  I know she's not supposed to have anything in her stomach, but I thought that if I pumped for like 20 minutes right before, that I wouldn't have any more milk.  The nurse said that would be ok, especially since she was visibly acting so hungry.  I asked the nurse if baby felt hungry because the food was skipping her stomach, going straight to her intesttine.....she said she'd never seen any baby act like this before.  Usually they just sleep and are content that their gut is being fed.  Not my baby!  I pumped and then started non-nutritive.....that's what she wanted.  She latched on super quick and was sucking away.....after about 10 minutes, I heard her swallow.  That was NOT GOOD.  I immediately pulled her off and sure enough she had milk in her mouth.  She was sucking so hard and so intently that she got some milk.  No more non-nutritive for her :-(  She was so mad after that.  She was screaming and crying so loud....I'd never seen her act like that before.  She didn't want the binki, she didn't want to be rocked, she didn't want to be sang to, she didn't want her bouncer chair....she just wanted to eat, poor girl.  The nurse went and talked with the NNP and told her what was going on.  She came in the room and was giggling with me at how mad baby Katea was because she was hungry.  I joked and told her that I didn't know if she was going to last 2 weeks without food in her stomach, especially since it had only been 2 days and she was already starving.  The NNP wrote an order for some sugar water(forgot the medical name for it) she said we could dip her binki in it and let her suck on it....just something that might help her calm down.  It took a little while to get the order filled, so in the mean time, I changed her diaper...changed her clothes and wrapped her really tight in a warm blanket.  That calmed her down a lot.  We turned the lights off in the room and it was pretty dark, and then she finally fell asleep.  Poor baby girl fell asleep starving.  At least if she wakes up hungry, she'll have the sugar water to suck on!

Baby Katea finally sleeping....even though she's starving....poor baby girl :-(

Tonight she weighed 2880 grams, which translates into 6lbs.5 1/2oz.!!  That's my girl...grow grow grow!

Upper GI

So today has been an extremely emotional and draining day!  I got to the hospital early today because I wanted to be here for her little procedure.  When the NNP called me, she told me if I was here, I would be able to go with my baby Katea to the radiology room for her procedure.  The upper GI tests the amount or severity of reflux she has, and if it's what is affecting her respiratory distress.  They put 30ml of berium(a dye) into a syringe and put it down her NG tube to her stomach.  It was actually pretty cool to see it fill up her little stomach and travel into her intestines.  I didn't really know what they were looking for, but I expected the procedure to last at least 30 minutes....especially since she gets her food over a 90 minute period and it's not usually until the end of her feeding that she refluxes really bad.  The test was done super quick....too quick for me!  We were in and out of there in like 7 minutes.  The radiologist told me that he did see some reflux, but not enough to be adding to her respiratory distress, and he wasn't worried about it.  I didn't say anything, but I was thinking they should just wait and see....5 minutes was not long enough.  Sure enough, as soon as we took her off the table and put her back into her crib, she started coughing, gagging and she had a bradicardic episode and de'satted for a while....which she did need stimulation to come out of.  :-(  The RT, Becky that went with us kept saying over and over "I'm so sure, as soon as we put her back she starts coughing".....I was glad she noticed.  I just wish they would have waited 5 more minutes to be able to see what was making her cough. 

We wheeled her back to her room and she had another pretty severe episode, which started out with her coughing and gagging.  Charise was the charge nurse today, and thankfully she stopped by to visit...so she helped me try to help her out of it, she was blue for a while, not fun!  That was a bad one.  I held her for a while, and waited for her to fall asleep....and then I left for a minute, just to take a break.....today I am a wreck, and I'm not being strong for her....so I needed to go for a walk for a little bit.   I feel very overwhelmed and emotional....and I don't know why.  I've been handling it so well, I think, up until now.....and today I just feel like it's too much.  As much as I didn't want them to find anything bad on her x-ray, I also wanted them to find something that would be the answer to why she has such severe lung disease....an answer to why we haven't been able to wein her oxygen very quickly....and answer to why she's not breathing yet....a quick fix to make her all better.  I know that was just wishful thinking.  I know she's struggling so bad because she came so much earlier than she was supposed to.  It's just hard to see her go through this!  I feel like I sound ungrateful, but I'm not....I am really really grateful for everything....today is just a bad day for me.  I'm allowed one of those once in a while, right??!!  They told me last night that she's officially the baby that's been here at the NICU the longest.  Not a title I was too excited about.  :-(  

Today is Tuesday, and it's scrapbooking day.  I had totally forgotten about it, but when I went to take my walk, I ran into them.  Scrapbooking day is just a day that the parent support group gets together to make scrapbook pages for the unit.  They allow other mom's to come and visit and scrapbook.  I love going, it's a nice little break from all the craziness and stress of the NICU.  I was glad it was today because it gave me a little while to stop crying and get my mind on something else.

When I was done, I went back to baby's room.....her machine was dinging, she was low-satting.....I looked at her Fi02 and she was at 44%.....WHAT??  That was the highest I had ever seen her before....and she was low-satting....what was going on?  Her nurse was taking care of another baby at the time, so another nurse came in to tell me she would be in in just a minute to talk to me.  I took her out of her crib and held her and then her saturations came up and she started high-satting.  Her nurse Brooke, told me that all hell broke loose after I left.  She had 3 more severe bradicardic episodes....and there were times where her saturations were all the way down to 9, and she was blue with purple lips.  They had to vigorously simulate her to get her to snap out of all of them.  Just to make sure she wasn't getting sick and that she wasn't developing any infections, they immediately ordered a CBC, a blood culture and an x-ray.  Everything came back normal.  Her blood work looked great, her x-ray looked fine, besides the obvious lung disease....and there was no sign of infection, or that she was getting sick.  She was just having a really bad reaction to the procedure that was done, and the berium dye they put in her stomach.  :-(

I kept thinking all day that I wished the radiologist would have waited just 5 more minutes so he could have seen what was causing her to cough, gag and brady.  Just 5 more minutes.  Brooke had the NNP come in and talk to me, and I mentioned to her that I thought the test was too fast.  She actually agreed with me.  They had noted how many episodes she was having, and during the break....when baby Katea was gagging, the NNP suctioned her out and got quite a bit out of her chest area.  Because of the gagging and how high the stuff was that she suctioned, they decided to go ahead and treat her as if the acid reflux was the problem.  I was so relieved!  She was telling me that her esophagus was probably just worn down and it hurt from all the acid coming back up....that's why she was crying, bearing down so hard...and as a result of doing that, she would brady.  At least this treatment plan would give her a break and let her poor little esophagus heal.  And, if it is the reflux that is adding to the respiratory distress, we will be able to wein her oxygen more quickly now.  They placed the NJ tube, through her nose, past her stomach, straight to her intestine.  Because the intestine can't get bolus feedings, there will be continuous feeding 24 hours a day, just at a slower rate.  That will give her stomach a chance to rest and heal, and her esophagus also.  That means we stop the non-nutritive, in case she gets some milk.....they don't want anything at all in her stomach.

The plan is to do a swallow test towards the end of the 2 week period, just to make sure that she's swallowing and that the milk is going to her stomach and not to her lungs.  If it is and her stomach has had time to heal.....and we were able to wein her oxygen, then we'll get to start feeding her through her mouth.  But for now, we just wait and let her heal.

I don't really know what this means as far as a timeline to bring her home.  For sure it won't be until the end of January, possibly even February now.....it all depends on what happens to her after the 2 weeks with the NJ tube.  Today wasn't the best day for my poor baby girl, and unfortunatly not my best day either :-(  I shouldn't have bad days on the days she's having bad days, I need to be strong for her.  Hopefully I'll sleep it off and start fresh again tomorrow.

I am SO grateful for the NICU staff.  I'm grateful for how proactive they are in trying to find out what is really wrong, and trying to fix it.  I'm grateful to them for comforting me and bringing me tissues when I cry.  They are amazing people, and I'm so so glad it's them that take care of my baby!  It's really hard for me to leave her everynight there in the hospital....even after 94 days, it's still hard....but I'm completely comforted and happy knowing she's where she needs to be and she's in the best hands!!

With that said.....Good Night!  More updates tomorrow!

Christmas Photoshoot

Baby Katea is so loved!  Her primary nurse Anjanette did this awesome Christmas photoshoot with her.  Anjanette did everything.....brought all the props, set everything up....and took the pictures....right there in her crib!  She told me a while ago that she was going to do a photoshoot with Katea, but I had no idea she was going to go all out like this!  She's amazing and I absolutely LOVE these pictures!  It was a great way for her to show off the santa hat and leg warmers that she made for Katea!  :-)

When I got to the hospital the day after these pictures were taken, I saw these two scrapbook pages hanging on her wall......our primary nurse Charise made these pages with the pictures Anjanette took!

This page made me tear up.....just the caption that was written.....her nurses saying "Our Precious Little Gift Katea"....and then signed by all of them at the bottom.  We are so blessed with such loving and caring nurses who not only take care of baby Katea, but they really love her!

 

 

A couple days after that, another one of our primary nurses, Stacey did her own little photoshoot with baby Katea....She was taking care of her and Katea was so wide awake and social so she took advantage of the opportunity and the pictures turned out amazing!

Stacey also made me a scrapbook page of their little photoshoot!  It turned out so cute!  Love the caption "Santa's favorite....(and my nurses too!)"

Then on Christmas Eve, Charise made this little card for us!

WE.ARE.BLESSED!

3 Months!

I can hardly believe it's been that long!

I didn't get a call on Thursday (12/23/11) from the NNP, so I just assumed there were no changes made to my baby.  Usually I get a call if there are major changes made, and if it's just something minor...they just tell me when I get there....since I'm there everyday!  When I got to the hospital on Thursday, I noticed that she was down to 3 liters of oxygen.  I was really surprised because I thought we were going to wait because of how much she has been yo-yoing.  She actually was doing really well on the 3 liters, her Fi02 hadn't really gone up much, she was still hanging out between 33-38%.  I was glad that she was doing so well....and that we made some progress!  Jessie was the nurse that night, she's so sweet.....I really like her!  I was asking her a lot of questions.....I just wanted to know what changed to make them think she was ready to go down on her oxygen?  I just keep hearing that we'll wein when she lets us know she's ready....so I just wanted to know how she let them know she was ready?  She was still yo-yoing on her oxygen saturations, but she hadn't had a bradicardic episode for a couple days......so that's why they thought she was ready.  Plus, we're not even sure it's the weining of the oxygen that's making her de-sat....or if it's just the acid reflux she's experiencing!  All that really mattered was that she was doing well on the 3 liters.  That was definitely progress!  That day, they also up'd her feedings to 46ml every 3 hours....still over the 90 minutes....still with the same amount of fortifier, benaprotein and microlipids.  Going down a little on her oxygen was awesome news.....because it meant a step closer to coming home!

Christmas eve was a crazy day!  I was such a procrastinator this year and didn't even start shopping until pretty much Christmas Eve......crazy, I know!   I took my 3 kids along with me to get the last minute things for the Christmas dinner because Ova wasn't feeling too good, so he stayed in bed all day :-(..... we stopped at McDonald's to get them something to eat, and while they were playing in the playplace, I got a call from the NNP.  She was just giving me an update.  We talked a little about baby Katea's acid reflux, and how she's been doing it more often.  They decided to go ahead and start her on prevacid.....she said it doesn't cure the reflux, but it lowers the acid (pH) in the stomach, and hopefully that would help her.  They were worried that the acidity of her reflux would cause her to have esophogitis, which is wearing down of the esophogus....so they were trying to prevent that.  With the prevacid, they were hoping that it would not only help her reflux, but also help stabilize her yo-yo'ing and bradicardic episodes.  They were going to start that day and try it for a few days to make sure it was working.  If it wasn't making a difference, they would have to reasses and see what else they could give her.  That was the only change that was made that day....and I really hoped it would work.  Heartburn sucks!  Stacey was back that night, on Christmas Eve and while I was there, she yo-yo'd a little bit, but not too severe.  I just hung out with her for a little bit, and I left the hospital around 1030pm to hurry home because I hadn't started wrapping anything yet :-/ 

Christmas day was a wonderful day, but pretty crazy busy as well.  I'm not gonna post about what we did Christmas day in this post, because it deserves a post of it's own, but baby Katea had a good day!  She was spoiled and got lots of gifts, and Santa even visited her!  I stopped by for an hour during the day, and then I went back again at night to spend some time with her.  Ova has been sick...coughing and runny nose, so he couldn't go to the hospital to see her.  He really wanted to, but it's just not safe to expose her to anything, because if she catches something and gets sick, it will be SO SO BAD for her poor little lungs.  I know it's been really hard on him, and hopefully he'll start feeling better soon!  Annica was working on Christmas morning.....and she told me baby was having a great day!  Not too much yo-yo'ing on her saturations, which was great!  When I came back at night, Meredith was her nurse.  She wasn't having as great a time during the night as she did during the day.  She had two pretty severe bradicardic episodes just while I was there....and they lasted pretty long and she needed a lot of help getting out of them.  I hate seeing her have those....even though I don't freak out and panic publicly anymore, they still scare the heck out of me!  Nothing had changed that day, she was still on 3 liters of oxygen and 46ml of milk every 3 hours.  Stacey was working Christmas night, so she stopped by to say hi.  She was happy to see that baby was on 3 liters, because the night before I guess after I left she had a really bad night and had to be turned back up to 3.5 liters.  They turned her back down to 3 liters in the morning because they're thinking the issue is the reflux and not the weining of the oxygen....she's had pretty stable breathing patterns, not the periodic breathing which would indicate stress from the wein.  I was glad she was at 3, but we just had to watch her closely and make sure she was tolerating it.  She brady'd twice that night and yo-yo'd quite a bit.  It was just something they needed to watch.  The yo-yo'ing of her saturations, and the turning of the Fi02 up and down to chase her is affects the ROP in her eyes, so it's a very touchy subject.  I got to do non-nutritive that night and just sat with her and held her for several hours. 

Today, 12/26/2011, my baby girl is 3 months old!  I can't believe it's been 3 months already....honestly the time has flown right by!  I look at her and am amazed at how much she's grown and how much progress she's made.  She was 1 lb. 12 oz. when she was born, last night when we weighed her, she weighed 6lbs.1oz.  She's definitely growing!  Her lungs are still struggling, but they've come so far.  She shouldn't even have to use her lungs yet, because she's still 2 weeks away from her due date....but she's doing amazing!  Everything we've asked her to do, she's doing.....or at least trying really hard, and I'm so proud of her!  I got a call from the NNP this morning....she was letting me know that they up'd her feedings again to 48ml every 3 hours.....and they decided that because of the continued yo-yo'ing and her coughing and gagging....the prevacid wasn't really working.  They decided to order an upper GI(gastro-intestinal) test.....which is a colonoscopy.  Depending on the results of the GI test, they will do a swallow test....which is where they put dye in a nipple and have her swallow it to see if it goes to her stomach or if she is aspirating any of it into her lungs.  They're not really sure what the problem is, but they're doing these test to rule out those as causes of increased respiratory distress.  If she is aspirating, they'll have to put an NJ tube in......right now she has an NG tube.  The difference is the NG goes to the stomach, and the NJ will go right into the intestine and bypass that stomach.  If she has to get that, she will have it for 14 days while giving her esophagus time to heal from all the acid reflux.  That 14 days will be continuous flow of food straight to her intestine...which means we would have to stop non-nutritive or really anything in the mouth.  We don't know if there is something that is causing more severe respiratory distress, or if it really is just her lungs, and we need to be more patient.  Tomorrow will tell!  At the hospital tonight when I was with her, she was super duper sleepy all night.  Even when I gave her a bath, she was so out of it.  She didn't yo-yo nearly as much as she has been, but her Fi02 was a slight bit higher.  I didn't get to do non-nutritive because she was so tired and she wouldn't have much control over her throat muscles....the last thing we want is for her to have an episode while doing non-nutritive, we don't want her to associate something negative with breastfeeding incase she develops an aversion to it.  I left her tonight and she was sound asleep.  I'm feeling really tired and worn-out....like I'm running on low.  I just count my blessings for her everyday!  With so many things that could go wrong, it really is a miracle that so many babies are born full-term and healthy with no problems at all.  I've always been grateful to be a mom, but this whole experience with my baby Katea has really really opened my eyes and made me realize how lucky and blessed I really am.  I'm grateful for the NICU staff, all of them....for all they do.  I think I just need some sleep....re-charge my battery so I'm ready to be there for her tomorrow for her upper GI test.  I love you baby Katea.  Happy 3 month birthday! 

Spoiled!

Baby Katea has officially been in every pod in the NICU.....

D41

B20

A7

D39

and now she's in C32......hopefully this is where she'll get to stay until she goes home, especially since her room is all decorated just for her!  :-)

This 'Miracles' board was a gift my older sister Leslie made for baby Katea.  It says "Miracles, believe in them" and then she put little clothes pins for me to be able to hang some pictures on.  I thought it would be perfect to print pictures to show how much she's grown and progressed since she's been born, especially for people who come and visit and think she's so small.....she's actually so big now!!  I LOVE this board, and it's gotten a lot of compliments from pretty much everyone that comes into her room!

Santa baby.....with her santa hat and leg warmers from her primary nurse Anjanette!

Baby Katea's Christmas reindeer that primary nurse Meredith made with Tea's little hand prints....so cute!

This cute little lion was a gift from the NICU....they gave it to baby Katea because it reminded them of her....they both have the same fuzzy soft hair that sticks straight up....hahaha!  These stuffed animals were donated to the NICU by a little boy that collected them as part of his eagle scout project. 

This little note was attached to the lion....such a cute idea!  The little boy who did this service project, had a little brother that was born 2 years ago that had to spend quite a bit of time in the NICU.  This place really changes your life, and I'm amazed....especially at this Christmas season how many former NICU parents give back, and remember us parents that are here now.  Almost everyday for the past couple weeks, we've walked into baby's room and seen another present under the tree, or gift bag of cookies and candy....with a note that shares their NICU story and words of encouragement and advice.

I made this picture frame as one of the crafts provided by Common Bonds (NICU parent support group) they always have cute crafty things for us parents to make for our babies....primary nurse Stacey took this picture and put it inside for me!

This little flower was a windmill thing that my little sister Marie decorated with cute stickers and brought to baby Katea a while ago.  We kept trying to hang it on the wall, but it was too heavy and kept on falling down.  So primary nurse Anjanette thought of this brilliant idea to make it into a mobile to hang over her crib.  It turned out so cute and she loves it and stares at it all day long!

Baby Katea has made A LOT of friends since she's been here.....lots of nurses, RT's and the common bonds ladies just love her!  Because she has so many friends, she's been pretty spoiled.....and we love it!  :-)  These next pictures are different beanie's that were given to her from one of the Common Bonds mom's, Tricia......she's always thinking of baby Katea.....we love her!  

Her reindeer beanie.....isn't this just the cutest thing you've ever seen??

Her little Koala bear beanie...

Her Christmas headband....with ponisetta and all!

Like I've said over and over....we LOVE and appreciate all the NICU staff for everything they are doing for our baby girl....and they obviously LOVE her back just as much! 

We are blessed!