It's beginning to look a lot like Christmas...

Baby Katea's nurse Anjanette made this adorable santa hat and leg warmers, just for her.  She's a bit spoiled by all her nurses!  They love her just as much as she loves them!

We finally made time to put up our Christmas decorations, thanks to my three little helpers!  All the Christmas vinyl is up...

Our tree is up and decorated!

One of the parent support people, and our good friend Tricia made this adorable Christmas name tag to hang on baby's bed...

Even Baby Katea has her own little Christmas tree...

We bought a little angel ornament for baby Katea's tree....just a reminder of her twin sister baby Cindy!  We'll put it on our tree every year, from now on...

The NICU let all parents be part of their Christmas celebration by letting all of us bring one ornament to adorn the Christmas tree in their lobby.....when we went to look for one, Ova picked this one, and it's absolutely perfect for the NICU tree!

When we were looking for the ornament for the NICU tree, Ova found this one....that totally made me cry.  We bought it and put it on our tree at home....it will also be one that we use every year from now on....always remembering baby Cindy!

Christmas is just around the corner....I can't believe it's only 10 days away.  This year feels different to me, I don't really feel like it's the holidays......maybe because it's not snowing yet, maybe because my little family is not all together, maybe because I didn't go black Friday shopping, maybe because I haven't bought one single thing yet......maybe a little bit of everything.   My neice Lote called me the other day and asked what I wanted for Christmas....she said she had to do a report for her class on what most people are asking for during this season....she wanted me to tell her something materialistic...something that can be bought from the store....but to be honest, I don't want anything that can be bought from the store....all I want for Christmas is for my baby Katea to continue to grow and progress so that we can all be together as a family sometime soon....that's all I really want!

I am, however extremely grateful during this holiday season.....grateful for my little family, my wonderful husband and all my kids....grateful for my parents and siblings....grateful for everything we have already been blessed with...home, vehicles, food, etc....grateful for Ova's job....grateful for Gramma Tea and everything she does....grateful for miracles, because they really do happen!  Grateful for the NICU staff, especially our primary nurses.....we LOVE each of them so much and are so grateful for everything they do for our precious baby girl, and for us.....grateful for all our family, friends and even strangers who have shown their love and blessed our lives.  We are blessed, we know we are....and we are so grateful!  I hope you all have a very Merry Christmas and a wonderful holiday season! 

All I want for Christmas

This little Christmas card that Meredith made is perfect!!.....we've been told that if she can grow in length, her lungs will grow and develop and get stronger and she'll need less oxygen, and she'll get to start eating with her mouth instead of getting her food pumped into her stomach!  So its true...all she or us wants for Christmas is for her to grow and inch or two in length!!

She's well on her way to getting what she wants!  Yay!  They adjusted her feedings again, just up'd the amount due to her weight...but she's still getting the 27 calories with microlipids and 2 scoops of protein.....and yesterday(Sunday) we were able to see how much it's working for her!  She's up to 38ml of food every 3 hours....and it's totally working.....she's growing!

I love Sunday's because that's the day that they measure her head circumfrence and her length.....they weigh her everyday, but measurments are only done once a week.  Yesterday, she grew 4 centimeters in length, 1 1/2 centimeter in head circumfrence, and she gained weight!  She's now up to 4lbs.14 1/2oz. (only 1 1/2oz. more to be at 5lbs.) and she's almost 18 inches long!  She has come so far, I can't believe how big she is!

When I walked in her room yesterday, Meredith was holding her, rocking her and talking to her....and she gave me the awesome news!  I got to start non-nutritive feedings!  Non-nutritive feeding is where I pump first to get all the milk out and then I let her suck to make sure she can latch on.....she did amazingly well!  They only wanted me to try for 10 minutes so she wouldn't get overwhelmed.....but she did amazing!  It was almost as if she was waiting for something to come out....haha....she would suck for a while, then stop and look around...then suck again!  I was so happy that we're finally at that stage....maybe now, my milk supply will increase(fingers crossed).  I get to do that once a day, everyday now!  They start with non-nutritive so she can get used to it....so that when the time comes that she actually gets to start eating from the breast, it won't be such a shocker to her!  Big steps my baby girl is taking, I'm so proud of her!  :)

In rounds yesterday morning they talked about how she's been completely stable with her Fi02 consistantly between 26-33%.....the original plan was to wait until she gets her Fi02 down to 24% for a couple days before weining her oxygen, but it's been 11 days on 4.5 liters.....and she's stable....it's just her Fi02 isn't going down.  They decided in briefing yesterday morning to order a chest x-ray for this morning to make sure her lungs were expanded and open....and if the x-ray looked good, they would turn her down 1/2 a liter.   Well, her x-ray looked awesome, so they were able to turn her down to 4 liters.  We're gonna sit there for a while to let her get used to a little less pressure on her lungs!  Baby steps is what we have to take, and baby steps are working!  :) 

The NNP came in and updated me today on my baby Katea.....she told me that she was doing amazing and they were really happy with her progress.  I'm a very proud mama.....she is amazing.....and I'm really happy too!

With the way things are going, we're hopefully looking at taking her home sometime mid-January!  We're not really focusing too much on when we get to bring her home quite yet though, we're putting all our energy, prayers and hope on her progressing how she needs to.....and when she gets there, she'll get to come home!  My mom and dad came up to visit her again a couple days ago and all my dad kept saying over and over was for us not to push the doctors.....just let them tell us when she's ready, don't push them to let us take her home......and honestly, we're not in any rush at all to take her home.  Don't get me wrong, of course that's where we want her, so our whole family can be together.....but as long as it takes for her to be READY is ok with us.  We are well aware of how lucky and blessed we are that she's alive and doing so well....we see miracles every day with the progress she makes....we're forever grateful for everything the NICU staff is doing for her.  We are so thankful and count our blessings everyday!

I'm blogging right now during the hour the NICU is closed for shift change.....hopefully today she'll hit the 5lb. mark!  Good job my beautiful baby Katea....you're amazing, I can't say it enough!  :)

Angels among us

I got a postcard in the mail last week for the Redwood Memorial Estates annual Christmas Devotional.  They were inviting us for a night of celebrating our loved ones who have passed on. A night that we could spend remembering our baby Cindy.  They provided each family with several luminaries to put around the gravesite and also a sky lantern, which is like a mini hot air balloon to send off into the sky.  Since the devotional fell on a Monday, I thought it would be the perfect FHE. 

It hasn't snowed here yet, but it does get pretty cold at night, so we all bundled up and headed to the cemetary.  The devotional was from 5-8pm....and we got there at about 530.  When we walked into the mortuary, there were tons of luminaries (paper bags cut with different designs...put inside a plastic bag with sand to weigh it down, and a candle) lined up along the wall.  They told us to go ahead and take as many as we needed and then head over to the table to customize them.  We grabbed one for each of us....to put around baby Cindy's grave....then headed over to the table where we all wrote little notes to Cindy and signed our names on the bags.

They had a light dinner there for everyone, but we didn't want to have to carry the luminaries around all night, so we decided to take them to baby Cindy's grave and spend a little time there....then we'd come back for the launch of the sky lanterns and then we'd grab something to eat.  I'm not going to explain in detail what happened the rest of that night, I'm going to post some pictures to show you.....  Pay attention to the sky in all the pictures!

At this point we're watching everyone launch their sky lanterns and Ova leans over to me and says "I feel her here with us".....right after that, I snapped this picture

And then this one...

And then my camera would not take any more pictures....I tried several times, but it wouldn't work.  The battery was full, I still had room on my memory card....but it would not take another picture.  I have no doubt in my mind that she was there with us, along with many other spirits.......I had been taking pictures all night with a clear dark sky.....not until this moment did these blurbs appear.  Then after about 15 minutes I tried one more time to take another picture and this time it worked, and this is what I got....

An absolutely clear dark sky.

I felt overwhelmed.  I cried.  I know my daughter was there with us.  There truly are angels among us!

Show Appreciation

Since Makai is off track, I was able to go to the hospital early yesterday....I wanted to make it in time for the rounds so I could see what the plan was for baby Katea, and what the next steps were.  It was actually very informative and the Neonatalogist, Dr. Melleske explained things very well....he even drew me a little diagram showing me the different steps of lung development in babies with chronic lung disease.  He explained that all the steps are distinct and they all happen, but there is no time frame that he could give me on how quickly each baby can get to the next phase.  Baby Katea is stable right now, but he doesn't want to rush her or force her (by weining the oxygen liters too quickly) because sometimes the trauma of being rushed if the baby is not ready....makes them go backwards and they have to start all over again....and it causes even more damage to their little lungs.  Honestly, I like his plan.....and I understand that it could take a while.  He was telling me that this is probably around the time where most parents get frustrated because they feel like nothing is being done.  I can see how some parents could feel like that, but I don't.  Katea has been on 4.5 liters of oxygen for a week already and no other changes have been made....but I know that they're taking it slow with her, for her own good, so why get frustrated?  He told me that they wanted her Fi02 to be consistantly at 24% for a few days before he'll even think about weining.....she's still between 27-30%....so we still wait for her!

I know her growth has been an issue, and they've been trying different things to get her to grow and gain weight.  To me, she's growing....so I was glad I got to be there to ask the Neo what exactly their goal was, how much weight do they want her to be gaining everyday for them to be happy with her growth.  He explained that it wasn't necessarily her weight gain that they were worried about....it was her length.  She's been gaining weight just fine, but she hasn't been growing lengthwise.  Growth in length means development of lungs.  He told me he's not too worried about her lungs right now, he's more worried about her nutrition and getting her to grow, and then her lungs would grow and develop.  If they don't give her the proper nutrition, she won't grow because she'll be burning all the calories working so hard to breathe, that's why they've been focusing on getting the right mixture for her feedings....so she can grow.

She had another eye exam yesterday, and nothing has changed there.  She's still at a zone 2, stage 1 mild ROP.  They've scheduled another eye exam for two weeks.....they'll do them every two weeks until her eyes are developed!

The Neo asked me if I had any other questions.....I didn't, he answered everything I had on my mind.....but I wanted to take a few minutes to thank them for everything they're doing for Katea.....I was really trying hard not to cry, but yeah right....hahaha.....I cried!  It was a good opportunity for me to thank everyone...because everyone is at the rounds, nurses, RT's, pharmacists, neonatalogists....everyone.....  I don't think they get enough credit or recognition for what they do....they are lifesavers, miracle workers....and I'm so thankful for them!

I've heard a lot of stories about parents who get frustrated or angry...or just burnt out....and I've been told that I will get to that point at some time.... but to be honest, I don't understand that.  I've heard with my own ears parent's talking negativly about the Dr's or staff and I even heard a mom the other day in the parent's lougne saying that she would be so mad if her baby wasn't home by Christmas...that this would be the worst Christmas ever.  I just don't understand that.  I know everybody is different and life in the NICU can get really frustrating, I mean, it truly is an emotional rollercoaster....but they warned us about that from the very beginning....I just think why focus on the negative?  I've been going to the NICU every single day for almost 2 1/2 months.....and even though I get so tired of that place, I can't get angry or upset.....all I feel is gratitude for these amazing people.  I feel like if you're getting mad because your baby can't come home it's like getting mad at your baby for not being ready to come home...it's not the nurses or doctor's fault.  Like I said before, they don't get enough credit for everything they do! 

It's been weighing on my mind a lot lately, so I thought it would be the perfect opportunity to teach my kids how important it is to show appreciation in everything.  Last night when Ova was at work, I was sitting on my bed watching t.v. with my kids and I turned the t.v. off.  I asked them to tell me some things they were thankful for.  Makai said "but mom, Thanksgiving is over....now it's Christmas"  I was so irritated that he said that, but instead of getting mad....I asked him "so are you telling me that you can only be thankful for things during Thanksgiving?"  He said no, and I asked him what he's thankful for.  He said he thankful for me, and his dad for working hard, and G-ma Tea for taking care of them.  I asked Mone and he said the same thing.  They asked me what I'm thankful for and I told them I was thankful for Ova, for each of them, and for the Dr's and nurses that are taking care of baby Katea.  Immediately Makai said "oh yeah, I'm thankful for them too because if it wasn't for them, baby wouldn't be alive"  I told him he was right and that we needed to always TELL or SHOW the people that we're thankful for, that we're thankful for them.  I asked them what they could do to show me and dad that they were thankful for us......they said listen, clean their room, don't fight with each other.....and then Makai asked me how I show the Dr's and nurses that I'm thankful for them...I said that I tell them all the time, and I blog about how grateful I am.  He asked me how he could thank them since he can't go into the NICU anymore.....and I told him he could write a note or draw a picture and I'd take it and hang it up.  We spent the next little while drawing and coloring pictures for our nurses.  I think it's so important to show appreciation for the people or things that you've been blessed with.  I want my kids to really understand that, and to always show appreciation when it's due.

Makai's letter to the nurses

Mone's letter to the nurses

Honeymoon

So the nurses have been telling me that they think baby Katea is out of her 'honeymoon' period....and now she's showing the real her.  It's actually a really good analogy because the honeymoon of a marriage is all bliss and happiness and then when you get back home, it's back to reality...haha.

She went to high flow on Thursday, and did awesome!  They started her out on 5 liters and not to long after...on that same day, they turned her down to 4.  She did so well and everyone was so happy with how well she was progressing.  They made quite a few other changes that day as well....they changed her feedings from an hour to 30 minutes, they started to wein her hydrocortizone, they added iron to her vitamins, they up'd her feedings.  Just a lot of changes.  But she was doing so well with everything, that it was ok.  There was talk on Thursday night to go down even more on her oxygen, to maybe 3 liters.....but thankfully Meredith, one of our primary nurses was on that night and she advised against it.  That's what's so nice about having primary nurses....they know her so well and they know what she needs.  We already learned that baby Katea doesn't like us to move too fast, so she was firm with not weining her down another liter.  I'm glad she did that!

Her 'honeymoon' period lasted about a day and then she started showing small signs of distress.  Her Fi02 was swinging quite a bit, and she even had a few ABD episodes.  She just didn't seem like she was comfortable, and something wasn't right.  The thing is that so many things were changed at once on Thursday, that it's a little hard to tell what exactly it was that she wasn't tolerating.  They ended up going back up on her oxygen to 4.5 liters, and we're going to sit there for a while.  I'm really glad that they didn't end up going all the way down to 3 liters, it just makes me think she might have failed hard and would have had to be put back on the tubes.....thank you Meredith for preventing that!  :)  That's why we LOVE our primary nurses!

The also moved her feedings back to an hour and that seems to be working better.  Her bowels have been working really well, pretty much since she's been born.....she's been peeing and having stools on a regular basis.  Lately she's been really gassy and her stools have been so runny that it looks like she has diarreha.  Her little bottom started to get red, so we were putting an ointment to help prevent a rash.  They aren't really sure why she all the sudden is having such loose stools, because it could be a number of things.  One thing they've done to try and remedy it is they changed the formula for her food she gets.  She's still getting the 27 calories, with betaprotein...but they're adding microlipids to the mix.  So now, she's getting 33ml of breastmilk fortified with human milk fortifier to 24 calories, added microlipids(fat) that takes it up to the 27 calories, with a scoop of betaprotein.  It really amazes me at the science that goes into everything that happens here.  All the difficult formulas that have to be calculated so these babies can get exactly the dosage they need, not more and not less.  It's amazing!

Her weight gain has slowed down quite a bit....probably because she's been pooping so much....but the NNP's are concerned that she's not gaining or growing enough.  She had a huge weight gain yesterday, she jumped up 65grams and now weighs 1975, which translates into 4lbs.5oz. but the days before that, she either didn't gain or she only gained 5-10grams.  They don't look at the weight gain for one day, they look at the whole week....and well, she didn't gain that much this week.  Yesterday, she didn't grow in length at all either.  To me, she's grown a ton....I mean from 1 lb. to 4 lbs. is huge in 2 months, but they would like her to be growing more and faster.  Today when I got there, Stacey was there.  She told me they had changed her feedings.  She'd been a little higher on her Fi02, like between 27-33%, which is still ok, but higher than she'd been....and if she could just grow, her lungs would get stronger.  The plan they'd made in their rounds this morning was to increase her feedings from 33ml to 37ml.....and possibly fortify it to 30 calories instead of 27.  Just to try and get her to gain weight and grow.  She got her first feeding at 2pm today, Stacey didn't want to jump 4ml so quickly so for that feeding she gave her 35ml, fortified to 27 calories....just the same formula I explained before but 2 more ml.  I noticed that she was squirming a lot more and she acted like she was uncomfortable....and she spit up a bit.  When I called to see how she was doing tonight, the nurse told me that she wasn't tolerating the up'd feedings.....I guess at the 5pm cares they gave her the 37ml and she spit up then too.  So, they changed the plan back to the 33ml fortified to 27 calories....but they're doubling the betaprotein (giving her two scoops)....wow, that's a lot of information isn't it!  haha but that's what's going on with my baby girl!

She's still on 4.5 liters of oxygen and she's going to be there for a while.....the plan is not to force her, but to go at her pace.  When she can consistantly keep her Fi02 at 24-25%, then they'll go down a half a liter....they'll wait at 4 liters until she's consistanly at 24-25%, and then go down a half a liter more.....it'll take a little while for her to get down to the 2 liters to be able to start breastfeeding, but that's totally ok!  The NNP's and nurses don't want to rush her, and neither do we.  There was a glimmer of hope that we might be able to take her home for Christmas....but not anymore....and honestly, we're in no rush at all.  We're happy to stay in the NICU as long as we need to so that she can be READY to come home....no matter how long she needs!

Grateful for the staff at the NICU, especially our primary nurses....I know I've said it a million times, but I really am so grateful for everything they do for my baby girl!  I'm not looking at these changes as steps backwards....but more as Katea's timeframe, and we all need to figure out what that is and get onboard!  Afterall, she's the boss!

Bathtime

Since baby Katea L.O.V.E.D her first bath, and she tolerated it really well....they told us we could bath her twice a week now.  Her official bath days are Monday and Friday!  A week ago today was her second bath, she was still on the nasal IMV....so it was tricky, but she loved it!  I got to get her all soap'd up and scrubbed her down while our nurse Stacey held her......there wasn't anybody there to take pictures, so I had to stop scrubbing for a minute to snap a couple!  :)

One of our primary nurses Stacey helping Katea take a bath!

Big yawn!  Bathtime is hard work!  :)

Thursday was the big day....the day she got to kick the nasal IMV and switch to the high flow nasal canula.  Since Ova works graves, and down in Orem, we decided that it would be best if he tried to sleep during the day so he would be awake enough to drive down and work every night.  And then we'd spend most of our weekend days at the hospital with baby Katea.  I go to the hospital every single day and just keep him updated with her progress and everything that happens everyday.  This plan seems to be working just fine, but I know it's really hard on him because he wants to see her everyday.  I keep telling him not to feel bad because she knows he loves her and that he has to work to support our family.  It makes the weekends even more special for both of them!

Friday was going to be a big day for both baby Katea and for Ova.....it would be the first time he got to see his daughter without tubes down her nose or throat, and the first time he'd actually get to kiss her little lips.  And for her, it would be bath day.....so that meant the first time her daddy got to give her a bath!

As soon as we walked into her room on Friday morning, he went straight to her crib and started giggling.....he does that when he's happy, and emotional...and trying not to cry!  He put the rail down on her crib and bent down really close to her and started talking to her.  Told her he was proud of her, that she was so beautiful and that he loved her....and then the kissing began....it was like he couldn't take his lips off her....hahaha, big kisses all over her face.  All the kisses he'd been saving up for her in the 2 months she'd been alive were given in that moment....it was so sweet!  Since she's on high flow now, we get to hold her everyday....so he took her out of her crib and spent some quality father/daughter bonding time with her before her bath!

Stacey got her bath stuff all ready and then she told us that we could take over and give her the bath...and she'd take pictures for us.  She's so sweet...we really love her!  My job was to hold her in place so she doesn't slide everywhere and Ova was the one that got to scrub her down.  She enjoyed every minute of it....she loves her bathtime!

Thinking ahhhhhh this is nice!  :)

Daddy washing her hair with a toothbrush...

After the bath was over, daddy got to dry her off and get her all dressed

And this is my most favorite picture of all.....her listening to her daddy as he talks to her!  :)

She has been doing so well, and we're so proud of her amazing progress! 

Tube-less

Have I mentioned how amazing my baby Katea is??  If I haven't.....SHE IS AMAZING!!  Today was an amazing day....really, this week has been an amazing week!  After she got over the trauma of her immunizations, and the massive amounts of boogers that were clogging her nasal prongs.....they were able to get her back down to where she was at....12 breaths a minute from the machine.  She did so well with that that they decided to keep up with their plan of weining 3 breaths every 12 hours......until she gets to zero.

When I walked in her room on Monday, she was on 9 breaths.  That night she went down to 6 breaths....Tuesday morning down to 3........and Tuesday night down to zero!!  Yay!  They wanted to keep her there for a little bit to make sure she was still gonna tolerate it before making any big changes...especially since that meant she was doing ALL the work on her own!  She did awesome....so they planned to move forward.  The plan was to turn her PEEP down to 5 on Wednesday and let her stay on the lowest PEEP and zero breaths....if she did well with that, then they would take her nasal prongs out, and put her on a high flow nasal canula....which is what most people have when they're on oxygen...the two small prongs in their nose and the hose goes behind their ears.  That goal seemed so far away just a week ago....but now it was almost going to happen! 

She did awesome all day on Wednesday....she was breathing on her own and her Fi02 was below 30% all day long.....so guess what???!!!!  Today......Thursday December 1st, 2011.....66 days old, 2 months 5 days old.....almost 35 weeks gestation.....she's officially TUBE-FREE!!  Whoo-hoo!  No more tube down her throat, no more tubes(prongs) down her nose to the back of her throat.......just the nasal canula giving her oxygen to support her!  She's amazing and I'm so proud of her!

They put her on a high flow nasal canula....starting out getting 5 liters of oxygen......she did so well with that, that they were able to go down to 4 liters already today!  We're just gonna hang out there for a little while to make sure she continues to tolerate it....and we'll just wein slowly from there....so far, so good!  She's been doing awesome and her Fi02 has been mostly under 30%...which is exactly where we want it!  Once she gets down to 2 liters of oxygen, thats when she gets to start breastfeeding.....that's our next big goal!   I can't say it enough.....she's AMAZING!

Other changes she's made..... she's up to 32ml of breastmilk every 3 hours fortified to 27 calories, with betaprotein....and they're back to giving it to her over 30 minutes instead of an hour.  They are going to start weining her hydrocortizone, and we're praying this time, since she's bigger, she'll tolerate it better than last time!  They've added iron to her vitamins.......and she's gaining weight!!  Today she weighed 1865 grams, which translates into 4lbs.2oz.!!

This was an amazing week....she's making amazing progress....I'm so happy!

(Wednesday night w/ the nasal IMV)

(Today on the high flow nasal canula!)